View Full Version : Worried about lymphoma
Hi guys,
Feeling a bit scared about lymphoma.
Over two weeks ago-ish I noticed a lump on my neck. It's sort of hard and moveable, and pretty big - you can see it sticking out. It doesn't hurt.
About a week later, a similar one came up in the submandible area. This one was a bit more tender and perhaps even bigger.
I wasn't that worried but my mum was concerned by the size of the lumps so I went to the doctor.
She was a bit surprised by the size too, but said "well, they feel like normal reactive lymph nodes" and said she'd expect them to start going down now. She wrote down that one was 1.5cm, which doesn't sound that big.
They haven't gone away, so I'm going for a full blood count.
So yeah not feeling great about this one.
I don't have any other symptoms at the moment, apart from a bit of general malaise.
You're doing the right thing by getting them checked out, so often it's nothing other than reactive, unfortunately it's going to take a little time before you have answers and that van be hard.
How are you doing?
You're doing the right thing by getting them checked out, so often it's nothing other than reactive, unfortunately it's going to take a little time before you have answers and that van be hard.
How are you doing?
Thanks Nancy, I'm doing ok.
The doctor wrote: "reactive LN R side neck 2wks,not unwell
Examination: mouth nad,ears ok, R sn LN sl tender & larger one 1.5cm beside SM m,well in self
Diagnosis: expect to settle,blds if persisting next wk"
I'm going to have full blood count, CRP, and plasma viscosity.
I want to add a photo but I don't know how!
I want to add a photo but I don't know how!
Probably best not to post a photo per admin but that said, based on what the doctor said, sounds like CYA medicine to me.
Positive thoughts
Probably best not to post a photo per admin but that said, based on what the doctor said, sounds like CYA medicine to me.
Positive thoughts
Thanks Fish, and I hope you're right. I know that you really have gone through ENT cancer, so appreciate your input.
I really wasn't worried about it at all, but now it's been over two weeks and I still have these big lumps - one of which is visibly protruding from my neck. Today it's really sort of hit me and I'm kind of freaking out. Mainly the thought of how it would affect my parents. My mum only has me. It really does destroy me to think of that.
I hope it's nothing, for my parents' sake.
Also, not sure why the doctor wrote 'tender' because they're not. The one under my jaw was a bit, but barely at all now.
Thanks Nancy, I'm doing ok.
The doctor wrote: "reactive LN R side neck 2wks,not unwell
Examination: mouth nad,ears ok, R sn LN sl tender & larger one 1.5cm beside SM m,well in self
Diagnosis: expect to settle,blds if persisting next wk"
I'm going to have full blood count, CRP, and plasma viscosity.
"Well", "NAD" "OK" "Expect to settle"..These are the positives from the GP's report. Please don't catastrophise and think about your imminent death..You've done this before.
You will have to wait for the blood test results but I take it they are routine bloods and not urgent? It's always awful waiting but you must take it one step at a time and see what the results say? No point in needless speculation when you have no proof that anything awful is the matter, just horrible uncertainty because you don't know.
"Well", "NAD" "OK" "Expect to settle"..These are the positives from the GP's report. Please don't catastrophise and think about your imminent death..You've done this before.
You will have to wait for the blood test results but I take it they are routine bloods and not urgent? It's always awful waiting but you must take it one step at a time and see what the results say? No point in needless speculation when you have no proof that anything awful is the matter, just horrible uncertainty because you don't know.
Thanks Pulisa - I'm having the bloods tomorrow so I might even get the results this week. I guess they'll be looking at white blood cells and platelets mainly. And we'll take it from there.
Well done. I know it's hard but one step at a time.
Change of plan, and I just had my blood tests. Now the wait for the results. I'm not feeling good about this, guys.
One problem I have is that if I start feeling anxious I just stop eating. It feels almost physically impossible to eat. When I had my breakdown a couple of years ago I barely ate for months and lost 2.5 stone. I'm now just about back up to a healthy weight, but today I've only managed half a sandwich, a packet of crisps, and a fruit smoothie so far. And lots of tea. I'm not sure how I'll manage dinner, but I'll try to eat something. I'm going to have some warm milk now because I can drink ok, and at least that has calories!
4974
Here's the offending lump! Photos are ok, right? It's pretty visible as you can see. The other lump can't really be seen as it's buried in my jaw.
Know what? I hate lymph nodes. I've been dowm this road and it's absolutely miserable.
My youngest son had a whole string of them pop out in the exact place yours is.
What I learned was once they are up, they'll go down when they damn well feel like it. (I was given a time frame by the dr that was clearly wrong)
In the end, I also learned once they are up, they may never go back down as small as they were. They can scar and stay permanently enlarged.
Also learned the way they function is not exactly a 2 way street. They can swell quick but the draining system in them is poor so they take for ever to go down.
I just hate them.
Know what? I hate lymph nodes. I've been dowm this road and it's absolutely miserable.
My youngest son had a whole string of them pop out in the exact place yours is.
What I learned was once they are up, they'll go down when they damn well feel like it. (I was given a time frame by the dr that was clearly wrong)
In the end, I also learned once they are up, they may never go back down as small as they were. They can scar and stay permanently enlarged.
Also learned the way they function is not exactly a 2 way street. They can swell quick but the draining system in them is poor so they take for ever to go down.
I just hate them.
Really? I'm glad your son's ok. Did they find out what it was in his case?
I know I just have to wait for the blood results anyway. Either they'll say something bad, or they won't. Even if they don't, I guess they'll still do a biopsy if the nodes stick around? Idek.
He's fine.. all the drs said was they were up due to "some virus"
I can still see them today and they were originally up 20 years ago. Just dumb.
WiseMonkey
18-02-20, 21:04
Really? I'm glad your son's ok. Did they find out what it was in his case?
I know I just have to wait for the blood results anyway. Either they'll say something bad, or they won't. Even if they don't, I guess they'll still do a biopsy if the nodes stick around? Idek.
These days they U/S suspicious lymph nodes and they can see by the thickness of the wall (outside lining of the node) whether it needs to be biopsied or not. If the wall is a consistent thickness all round then the nodes/s are fine. I learned this from a ENT specialist when I had a persistent submandibular node come up. It was a bit bigger than yours, but harder to see under the chin and it was sore. It resolved within 12 weeks.
My bloods were all fine but I was quite rundown at the time, it was Winter! Good luck with it all.
These days they U/S suspicious lymph nodes and they can see by the thickness of the wall (outside lining of the node) whether it needs to be biopsied or not. If the wall is a consistent thickness all round then the nodes/s are fine. I learned this from a ENT specialist when I had a persistent submandibular node come up. It was a bit bigger than yours, but harder to see under the chin and it was sore. It resolved within 12 weeks.
My bloods were all fine but I was quite rundown at the time, it was Winter! Good luck with it all.
Thanks Wise. Glad yours turned out to be nothing. I actually kind of wish mine WERE sore... I'd probably be thinking less lymphoma more infection, then! The one in the photo was never sore at all really. The one in my jaw was tender when it first came up but now the tenderness has basically gone and the lump is still there... if anything, it's got bigger.
ShaunRyder
18-02-20, 22:11
I had two lymph nodes come up in my groin 1 each side, one was a quite small and sore and one was probably the same size as yours maybe even slightly bigger, the tenderness only lasted a day, I went to doctors and they said one was quite big but he checked my legs and I had a minor scratch which he said could be the course of it, went back in two weeks as it hadn't gone down and he done blood tests but all came back fine, the node has never come gone down and that was over 2 years ago and nothing ever came of it!
I also have one above my colar bone which can been seen, this was pre HA days so I never worried about it just assumed it was due to illness and that was years ago!
I had two lymph nodes come up in my groin 1 each side, one was a quite small and sore and one was probably the same size as yours maybe even slightly bigger, the tenderness only lasted a day, I went to doctors and they said one was quite big but he checked my legs and I had a minor scratch which he said could be the course of it, went back in two weeks as it hadn't gone down and he done blood tests but all came back fine, the node has never come gone down and that was over 2 years ago and nothing ever came of it!
I also have one above my colar bone which can been seen, this was pre HA days so I never worried about it just assumed it was due to illness and that was years ago!
That's good news Shaun, I'm glad all was fine with you 🙂 I guess it goes to show that inexplicable swollen nodes can just be idiopathic sometimes. Hoping for a similar result in my case. I'm not feeling at all good about it, but... that's how everyone feels when they're anxious about their health. Just when it's you, you feel like you're unique. To me it just seems logically and statistically most likely to be lymphoma, and I also just sort of feel it, but I could be wrong. I hope I'm wrong.
My coworker's son who did have lymphoma had a lump right where the neck and shoulder meet.. she described it as a "fist" sticking out of his neck.
ShaunRyder
18-02-20, 22:53
That's good news Shaun, I'm glad all was fine with you 🙂 I guess it goes to show that inexplicable swollen nodes can just be idiopathic sometimes. Hoping for a similar result in my case. I'm not feeling at all good about it, but... that's how everyone feels when they're anxious about their health. Just when it's you, you feel like you're unique. To me it just seems logically and statistically most likely to be lymphoma, and I also just sort of feel it, but I could be wrong. I hope I'm wrong.
The waiting part is the worst, I know there is nothing anyone can say or do to make you feel different until you get the results, but try and keep yourself occupied as best as you can and if you ever do feel the anxiety getting too much just drop a message on the these boards, there is always someone online who will chat!
Something that has helped some of my nodes over the years has been heat, I always use a hot bottle 10-15 mins few times a day on them.
My coworker's son who did have lymphoma had a lump right where the neck and shoulder meet.. she described it as a "fist" sticking out of his neck.
Ah, well mine definitely doesn't seem like a fist at the moment - so that's something!
It seems strange that somebody would wait until their lymph node was that big before seeking help, though! I can't imagine it just grew to that size overnight - it must have been gradual? At some point I'd have thought it would only have been a couple of cm like mine.
Sometimes people are afraid to seek help, though. I neglected what I knew damned well was a skin cancer for half a decade.
The waiting part is the worst, I know there is nothing anyone can say or do to make you feel different until you get the results, but try and keep yourself occupied as best as you can and if you ever do feel the anxiety getting too much just drop a message on the these boards, there is always someone online who will chat!
Something that has helped some of my nodes over the years has been heat, I always use a hot bottle 10-15 mins few times a day on them.
Thank you, yes, I keep checking the online portal for the results 😣
Although actually I don't feel too bad today. Better than yesterday. Maybe it's helped talking on here 🙂
It's certainly not like when I went fully mental two years ago, and every single moment of every single day for about six months was absolutely unbearable, beyond words. I just stayed in bed for six months, basically. I really, really hope I never return to that.
Sometimes people are afraid to seek help, though. I neglected what I knew damned well was a skin cancer for half a decade.
Yes, I can understand that. I hope you're ok now.
I'm glad that at least I've gone to the doctor pretty much straight away with this. I think the initial two weeks won't affect the outcome too much, if the results do turn out to be bad.
It seems strange that somebody would wait until their lymph node was that big before seeking help, though! I can't imagine it just grew to that size overnight - it must have been gradual?
No, it grew fast.
That said, he's fine now.
I think the lump under my jaw is getting bigger. It is also feeling a bit tender again, which I guess is a good sign. Also, I'm feeling some pressure in my right ear (the same side as the lumps) which maybe means... there is some kind of sinus / ear infection? Hopefully?
I've cast my mind back a few weeks, and I did have some mild cold symptoms. I felt exhausted and had a slightly blocked nose. It wasn't that bad, though - I've certainly had far worse colds and ear infections and I've never had swollen nodes like this.
Something else weird - the skin on the back on my hands has become extremely dry. I noticed the skin felt rough and when I looked at it I thought they were covered in tiny white spots. Then I realised it was slightly dry/cracked skin. It doesn't itch or hurt or anything. It's just weird. I've never had anything like that before.
What's going on guys :'(
I've created a sort of timeline of events.
Late January / Early February - exhausted, some mild cold symptoms (slightly blocked nose), some stress over ongoing fertility problems following some tests.
1st February-ish - not sure of exact date when I first noticed swollen node on neck because I was so supremely unconcerned that I barely registered what size it was or whether it was tender.
10th February - first date that I know for sure I was like wtf is with this node, and also around the time the second one under my jaw started appearing and felt tender.
14th February - went to doctor, neither node tender at this point, she thought they were reactive nodes but said they should start receding now so would have blood tests next week if not.
18th February - nodes no better so had blood tests.
19th February - weird dry skin on back of hands, some pressure in ear, node under jaw seems bigger and more tender, jaw on neck not tender and not sure if bigger but definitely not smaller.
I'm pretty bothered by all this.
ShaunRyder
19-02-20, 18:49
How often are you feeling the nodes?
When I had mine I was constantly checking to see if they were better, they would stop being tender and sore but I'd go and irritate them and make them worse, lymph nodes can get bigger very very easily if they are irritated.
How often are you feeling the nodes?
When I had mine I was constantly checking to see if they were better, they would stop being tender and sore but I'd go and irritate them and make them worse, lymph nodes can get bigger very very easily if they are irritated.
I'm really barely touching them... and I didn't touch them for like a week and they still got massive. Ugh I hate this.
glassgirlw
19-02-20, 20:18
I know that when we get super focused on certain things with HA it can be extremely difficult to turn our minds off. Whether this will help or not, I don’t know. But my sister is currently battling non-Hodgkin’s lymphoma. And her symptoms did not present with any of the things you’re describing. I’m not going to go into any details really as I know with myself, if I’m stressing over a particular disease/disorder, and I read symptoms, I miraculously develop said symptoms lol. But, It’s very possible they’re just reactive nodes left from a cold or whatever and sometimes they just take a crazy amount of time to get back to normal. Will send positive vibes your way!
I know that when we get super focused on certain things with HA it can be extremely difficult to turn our minds off. Whether this will help or not, I don’t know. But my sister is currently battling non-Hodgkin’s lymphoma. And her symptoms did not present with any of the things you’re describing. I’m not going to go into any details really as I know with myself, if I’m stressing over a particular disease/disorder, and I read symptoms, I miraculously develop said symptoms lol. But, It’s very possible they’re just reactive nodes left from a cold or whatever and sometimes they just take a crazy amount of time to get back to normal. Will send positive vibes your way!
Thanks so much for commenting, Glass. I'm so sorry to hear about your sister. How scary for you all. I really hope she's doing ok, and that you and your fam are doing ok.
I've created a sort of timeline of events.
Doing so illustrates the rabbit hole you're digging for yourself. You did the same thing previously and its a very familiar pattern on the forum. I get that you're concerned but taking a step back from documenting everything will serve you better in the long run. Hopefully, what I'm saying will resonate and you can act on it and deprive the dragon some morsels of reassurance until you get the results.
Positive thoughts
Doing so illustrates the rabbit hole you're digging for yourself. You did the same thing previously and its a very familiar pattern on the forum. I get that you're concerned but taking a step back from documenting everything will serve you better in the long run. Hopefully, what I'm saying will resonate and you can act on it and deprive the dragon some morsels of reassurance until you get the results.
Positive thoughts
Yes, you're right, I'm getting a bit obsessed. I just wish I knew what was going on, and I don't want it to be anything bad. I'm really hoping for just some sort of infection.
No itching / sweating / rashes yet, but the lumps definitely aren't getting smaller. They might even be getting bigger.
I'm functioning normally, at least. Going to work and acting like I always do. Comparatively, I don't feel too anxious - like, two years ago I couldn't eat, couldn't work, couldn't wash myself, couldn't even have a conversation. For six months! But right now I just ate a huge McDonald's (veggie) 🙂 So that's got to be good.
No urgent recall following the bloods either..?
No urgent recall following the bloods either..?
Well, I don't know if my doctor even has the results yet. I had the test Tuesday afternoon... if I don't have the results today I'll call up tomorrow!
glassgirlw
20-02-20, 14:25
Thanks so much for commenting, Glass. I'm so sorry to hear about your sister. How scary for you all. I really hope she's doing ok, and that you and your fam are doing ok.
thanks for your kind words, I appreciate it! Unfortunately she’s had a pretty major setback this week so for now we just continue praying. They live about 14 hrs from me so it’s very difficult to not be able to be there as she goes through this. So much harder on her to be the one going through it though. Praying is all I can do so I’ll do it!
please try (I know it’s hard) to not worry too much. If your doc has done bloods and you’ve gotten the all clear (not sure if you have yet?).
thanks for your kind words, I appreciate it! Unfortunately she’s had a pretty major setback this week so for now we just continue praying. They live about 14 hrs from me so it’s very difficult to not be able to be there as she goes through this. So much harder on her to be the one going through it though. Praying is all I can do so I’ll do it!
please try (I know it’s hard) to not worry too much. If your doc has done bloods and you’ve gotten the all clear (not sure if you have yet?).
Oh no, I'm so sorry to hear that. What an awful, stressful time you must be having. I'll think of you and your sister.
I haven't had my blood results yet. It's hard to see through the fug of anxiety whether I'm being rational or not. On one hand, I don't really have any symptoms other than the lumps. On the other hand, I have the lumps! Two quite big ones on my neck which aren't going away! I really don't know what to think at the moment.
glassgirlw
20-02-20, 14:52
Oh no, I'm so sorry to hear that. What an awful, stressful time you must be having. I'll think of you and your sister.
I haven't had my blood results yet. It's hard to see through the fug of anxiety whether I'm being rational or not. On one hand, I don't really have any symptoms other than the lumps. On the other hand, I have the lumps! Two quite big ones on my neck which aren't going away! I really don't know what to think at the moment.
i can definitely understand the stress and uncertainty. I deal with that when I have symptoms and not sure what’s causing them. As difficult as it is to “wait and see”, with the lack of any other symptoms I’m sure you’ll get your bloods back and all will be well!! They say not to stress until you have a definitive result - which I know is easier said than done sometimes. Just keep moving on with your days and try to distract yourself as best as possible. Will send positive thoughts your way!
I have my results. My doctor texted saying everything was normal.
I think my results look... ok. But to be honest I'm not entirely comforted. My white blood cell count was 5.6 (range 3.6 - 11). I've had my white blood cell count done on three other occasions throughout the course of my life, and it has always been above 7.
So to me, it looks as though my white blood cells are dropping. Coupled with the lumps, I'm a little concerned. I know my doctor won't have compared this result to my previous results - she'll just have seen it's in range and given it the ok.
I could really do with others' input here. Am I right to be concerned? Should I go back to my doctor?
At the very least I still have these big lumps, which aren't going anywhere, and I'm starting to feel a bit ill now. If nothing else, I must have an infection?
I'd really appreciate people's thoughts on what I should do now! Thanks guys.
glassgirlw
20-02-20, 18:28
If it were me, I truly wouldn’t be immediately concerned. If there were something sinister going on, your WBC would be WAY out of whack. You’re very much in the proper ranges. Many types of infections can cause lymphnodes to become reactive, many of which can’t be resolved with medication anyway. I would personally wait a week or two and see if the nodes go down. And definitely do not touch, poke, or prod at the nodes as that will just make them either swell more, or refuse to go back to normal size once the infection is done.
ShaunRyder
20-02-20, 18:38
No I wouldn't be concerned, the doctors would know if there was something to worry about and they would have you in for treatment ASAP.
If in a week or so you are still obsessing over the nodes I would go to the doctors, not to get them looked at but to help with your anxiety.
And as glassgirlw said, do not touch them at all!
I'm glad you have got good news from the tests 😊
Thanks Glass and Shaun, I really appreciate your thoughts. You're probably right. I'll just try not to think about this tomorrow or over the weekend and hopefully things will be better next week.
I'm not doing very well at not thinking about it 😬 I keep thinking what could have caused my WBC to drop from what it usually is.
Also, some labs say 5 is the lower normal limit, so I'm only just within range.
glassgirlw
20-02-20, 19:39
I'm not doing very well at not thinking about it I keep thinking what could have caused my WBC to drop from what it usually is.
Also, some labs say 5 is the lower normal limit, so I'm only just within range.
I understand your concern because it’s so crazy difficult to not worry about things when we have real symptoms. Just can’t turn off the mind.
I know you’ve been through the wringer with HA over the past few years. What types of things did you do to help stop the googling? Because I think you’re going to scare yourself silly if you sit there and do that while you wait for the nodes to decrease in size.
I still don’t think it will do any good to go be seen again by your doc so soon after your blood results. I think they’ll still want to give it a week or two, then possibly retest the WBC just to see if there’s any changes. Or, by then, the nodes may have gone down and no retesting will be necessary!
I have my results. My doctor texted saying everything was normal.
I think my results look... ok. But to be honest I'm not entirely comforted. My white blood cell count was 5.6 (range 3.6 - 11). I've had my white blood cell count done on three other occasions throughout the course of my life, and it has always been above 7.
So to me, it looks as though my white blood cells are dropping. Coupled with the lumps, I'm a little concerned. I know my doctor won't have compared this result to my previous results - she'll just have seen it's in range and given it the ok.
I could really do with others' input here. Am I right to be concerned? Should I go back to my doctor?
At the very least I still have these big lumps, which aren't going anywhere, and I'm starting to feel a bit ill now. If nothing else, I must have an infection?
I'd really appreciate people's thoughts on what I should do now! Thanks guys.
What should you do? Absolutely nothing in terms of going back to the GP. Your white blood count is entirely NORMAL. There is no pathological "drop"-it is NORMAL. Mine is always around 4.
What do you have? Escalating HA which could turn into a repeat of your last "episode" which completely overwhelmed you.
Be very careful and welcome these very reassuring test results or choose to go back to how things were when you became obsessed with tests to the detriment of everything?
I understand your concern because it’s so crazy difficult to not worry about things when we have real symptoms. Just can’t turn off the mind.
I know you’ve been through the wringer with HA over the past few years. What types of things did you do to help stop the googling? Because I think you’re going to scare yourself silly if you sit there and do that while you wait for the nodes to decrease in size.
I still don’t think it will do any good to go be seen again by your doc so soon after your blood results. I think they’ll still want to give it a week or two, then possibly retest the WBC just to see if there’s any changes. Or, by then, the nodes may have gone down and no retesting will be necessary!
Yes, I guess so. But the other thing I just thought as well was that I was on prednisolone recently (a fertility related treatment) and that should actually raise my WBC. So the 5.6 might be falsely inflated and it's actually lower.
I can't stop thinking that it's weird that I have these big nodes that won't go down AND my WBC is dropping despite oral steroids.
glassgirlw
20-02-20, 19:50
Yes, I guess so. But the other thing I just thought as well was that I was on prednisolone recently (a fertility related treatment) and that should actually raise my WBC. So the 5.6 might be falsely inflated and it's actually lower.
I can't stop thinking that it's weird that I have these big nodes that won't go down AND my WBC is dropping despite oral steroids.
wouldn’t your doctors office know about your recent medications though? And have taken that into account? If you’re truly worried and can’t let it go, maybe just ring them up and ask those questions. But - when they give you the info you HAVE to accept it - and not keep questioning. I’m just concerned for you after your last HA episode that this could go bad for you quickly. I think you’ve made great progress and hate to see you slide backwards.
wouldn’t your doctors office know about your recent medications though? And have taken that into account? If you’re truly worried and can’t let it go, maybe just ring them up and ask those questions. But - when they give you the info you HAVE to accept it - and not keep questioning. I’m just concerned for you after your last HA episode that this could go bad for you quickly. I think you’ve made great progress and hate to see you slide backwards.
My GP didn't know... I'm having my fertility treatment with a clinic separately. I know you're right and I shouldn't get too overwrought. I should carry on as normal, and I'll try to. I just think all these things are strange.
They are not strange. Your bloods were normal-your interpretation of them isn't and is skewed by your HA.
They are not strange. Your bloods were normal-your interpretation of them isn't and is skewed by your HA.
Ok. You're probably right. I just want these lumps to go away. The one in my jaw is quite uncomfortable. I feel a bit ill. I hope they go away soon.
WiseMonkey
20-02-20, 20:40
Ok. You're probably right. I just want these lumps to go away. The one in my jaw is quite uncomfortable. I feel a bit ill. I hope they go away soon.
Personally, I'd wait a couple of weeks, then ask for an u/s. I had mine for several weeks then got an u/s and then the node went down the next week. There are lots of things that affect lymph nodes coming up and down.
BTW have you ever had your autoimmune antibodies (ANA's ENA's) tested? Sometimes they reveal interesting info (sometimes not). I'm not suggesting you have autoimmune stuff going on but it can cause lymph nodes to come up and down. However there are usually other symptoms going on like extreme fatigue, muscle aches etc. Please don't worry about this though, both my daughters have autoimmune issues (as well as myself) and we all function normally. :)
Personally, I'd wait a couple of weeks, then ask for an u/s. I had mine for several weeks then got an u/s and then the node went down the next week. There are lots of things that affect lymph nodes coming up and down.
BTW have you ever had your autoimmune antibodies (ANA's ENA's) tested? Sometimes they reveal interesting info (sometimes not). I'm not suggesting you have autoimmune stuff going on but it can cause lymph nodes to come up and down. However there are usually other symptoms going on like extreme fatigue, muscle aches etc. Please don't worry about this though, both my daughters have autoimmune issues (as well as myself) and we all function normally. :)
Thanks Wise. Yes, perhaps an ultrasound in a couple of weeks would be good.
I do have an autoimmune inflammatory issue which is the cause of my and my mother's recurrent miscarriages. It doesn't manifest in any other way, though - just the miscarriages and odd hormone levels such as prolactin, and high ESR - but normal CRP. The oral steroids amongst other immune suppressing medication should help with that next time I'm pregnant. ANA and lupus and all that stuff is normal.
I don't think that's causing these enlarged nodes, though. I don't know what is :(
WiseMonkey
20-02-20, 22:03
Thanks Wise. Yes, perhaps an ultrasound in a couple of weeks would be good.
I do have an autoimmune inflammatory issue which is the cause of my and my mother's recurrent miscarriages. It doesn't manifest in any other way, though - just the miscarriages and odd hormone levels such as prolactin, and high ESR - but normal CRP. The oral steroids amongst other immune suppressing medication should help with that next time I'm pregnant. ANA and lupus and all that stuff is normal.
I don't think that's causing these enlarged nodes, though. I don't know what is :(
My lymph node (submandibular) came out of nowhere and a few weeks later I had a raised rash over my body (upper chest and back, arms and legs), which I think is a mast cell issue (MCAS). My Dr gave me prednisone which resolved the rash, but if it had reappeared I would have had a biopsy. MCAS is another autoimmune issue and they can just pop up whenever!!
You can have various autoimmune conditions and be sero-negative for ANA's/ENA's. This is the case with me.
PS. lymphoma involving the submandibular is extremely rare, I think you're is infection or an autoimmune response. Try not to worry too much :)
lymphoma involving the submandibular is extremely rare, I think you're is infection or an autoimmune response. Try not to worry too much :)
Ah, that's good - I didn't know that!
Unfortunately, my submandibular one has grown and now looks like this:
4976
For some reason you can't see the other one from this angle, but it's still there - no smaller, and possibly even bigger.
I really think I should go back to the doctor. For antibiotics if nothing else.
I did see the doctor again (sorry guys). She was quite surprised the lumps hadn't resolved. She says we'll give it one more week and then she'll do a 2-week referral to ENT.
I did say outright I was worried about lymphoma, and she said she didn't think it was that. However, her reasoning was that the size of the lumps had 'switched'. She thinks the submandibular one has got bigger (it has) and the neck one has got smaller (it hasn't, she's wrong, but I didn't say that).
So now I just have to wait another week, then another two weeks, then hopefully I'll get some answers 😬
I keep thinking about having to tell my parents if it's bad news, and it's really upsetting me. The thought of their pain is beginning to make me panic a bit. I feel like I'm going to start crying.
Remember your thought patterns last time..
Are the 2 swollen glands on the same side?
Remember your thought patterns last time..
I know, you're right, and it is that same sort of anxiety... but it sort of seems this time as though logically things are pointing towards lymphoma. I've had these enlarged nodes for around three weeks now and they're getting bigger for no reason. I know it is easy to be blinded by HA but to me it just seems like lymphoma is almost the most logical diagnosis based on the symptoms. But I accept I might just be crazy right now.
Are the 2 swollen glands on the same side?
Yes, they're both on the right side.
I am going to take an ibuprofen.
glassgirlw
21-02-20, 20:21
I know, you're right, and it is that same sort of anxiety... but it sort of seems this time as though logically things are pointing towards lymphoma. I've had these enlarged nodes for around three weeks now and they're getting bigger for no reason. I know it is easy to be blinded by HA but to me it just seems like lymphoma is almost the most logical diagnosis based on the symptoms. But I accept I might just be crazy right now.
i understand you are worried and focusing on these lumps. But I just want to say to remember your ovarian/uterine symptoms you had before - and how sure you were of what the most “logical diagnosis” was then - and you ended up being wrong. Our bodies do weird stuff sometimes and sometimes there’s not a great explanation for it. I know you clearly have swollen nodes at the moment, but that doesn’t always mean it’s something catastrophic.
Yes, they're both on the right side.
Wonder what's going on over there.. sinus infection? Tooth? Scalp? Salivary gland infection?
Sounds like those glands are fighting a battle.
Kind of wish you had antibiotics now.
Thanks Nancy and Glass, I hope it's just an infection. I don't have any symptoms of any infections though. I asked my doctor if I should try antibiotics and she didn't seem to think so. I guess I'll just wait and see what happens this week.
Plus, I keep thinking, ok, I didn't end up having womb/cervical cancer, it wasn't exactly what I thought, but... it was still really bad. I lost my baby at 13 weeks. Since then I've been told I have specific immune problems that will likely prevent me carrying to term without immunosuppressant therapy. I've been told I have the ovarian reserve of a 40 year old, so my fertile years are reduced. I've had surgery to remove the scarring that the miscarriage caused, but my left tube is still mostly scarred shut. I've had problems with progesterone.
So it wasn't exactly what I thought, but it still wasn't good.
And this just feels like something else that isn't good. I hope I'm wrong.
I just want everything to be over. I want a break.
I've stopped dating for the moment until there's some resolution with these neck lumps. I'm so worried about my parents. Tomorrow I'm going to the hospice to volunteer so it'll be good to help out at least. I'm worried I'll be very distracted next week at work.
Yes it is. You have done so well to rebuild your life after last time..Any hint of lymphoma and you would have been sent to a haematologist by now but your bloods were normal.
Watching and waiting is very hard but morbid rumination will only harm you mentally as you know.
Please be careful.
I'm feeling a lot worse today. The submandibular lump is getting bigger. I don't know how big because it's buried and I don't want to poke around. The lump on the side of my neck is also getting bigger, particularly width-ways. It is 2.3 x 1.9 cm now.
I don't know why my doctor thought it wasn't bigger. She said it seemed like a grape the first time, but she's misremembering. It was never as prounounced as a grape. Perhaps as long and as wide as a grape, but it doesn't stick out as much as a grape.
Bloods are sometimes normal in lymphoma. Other symptoms only show up 25% of the time. My skin felt prickly, not itchy, last night, though that could have been my imagination.
I don't know how to wait weeks before ENT even sees me. I just need to get this diagnosed.
ShaunRyder
22-02-20, 11:25
When you was in a bad state about two years ago, what did you do to overcome that and get where you are now? You made huge progress in them two years, go back to then to things that helped you mentally that got you out of that state and try and tackle this anxiety/obsession of these lymph nodes.
When you was in a bad state about two years ago, what did you do to overcome that and get where you are now? You made huge progress in them two years, go back to then to things that helped you mentally that got you out of that state and try and tackle this anxiety/obsession of these lymph nodes.
I honestly didn't do anything! I was beyond help. But, as time passed, and nothing bad happened, and my tests were clear, I slowly realised that I didn't have the cancer I thought I had. It was just the continued clear results combined with the passage of time.
After that, my health anxiety basically went away. I was left with depression, which is bad but not as bad as anxiety imo.
Even when these nodes first came up about three weeks ago I was like meh. Now they're still here, getting bigger, and it seems like I'm closing in on one diagnosis.
glassgirlw
22-02-20, 12:47
it seems like I'm closing in on one diagnosis.
This is a most concerning statement in my mind, give your past history with HA. You’re not closing in on one diagnosis. Maybe your HA brain is, but there are a PLETHORA of possible causes for reactive nodes. Some of them are totally benign and not worth worrying over.
you know that paid reassurance is not going to help you in this situation. It didn’t help you before. You need to dig deep and figure out what you can do to put this worry out of your mind for the next two weeks. Working, volunteering, hobbies, visiting friends, whatever you need to do. Don’t let yourself dwell on this. When your mind starts wandering back around to the nodes, and the instinct pops up to poke and prod and determine if they’re growing or shrinking, you need to actively make the effort to turn your attention elsewhere. Unfortunately you are the only one that can control your reactions. How do you want to spend the next two weeks? It’s all up to you.
This is a most concerning statement in my mind, give your past history with HA. You’re not closing in on one diagnosis. Maybe your HA brain is, but there are a PLETHORA of possible causes for reactive nodes. Some of them are totally benign and not worth worrying over.
you know that paid reassurance is not going to help you in this situation. It didn’t help you before. You need to dig deep and figure out what you can do to put this worry out of your mind for the next two weeks. Working, volunteering, hobbies, visiting friends, whatever you need to do. Don’t let yourself dwell on this. When your mind starts wandering back around to the nodes, and the instinct pops up to poke and prod and determine if they’re growing or shrinking, you need to actively make the effort to turn your attention elsewhere. Unfortunately you are the only one that can control your reactions. How do you want to spend the next two weeks? It’s all up to you.
I do agree that there are many causes of enlarged nodes, but for them to continue to get bigger over a three week period (probably longer) with no symptoms of infection... that seems to point in one direction to me.
My mum has come over and we're playing a PS4 game called Arise now which is nice. And I'm reading a fantasy book she brought. At 5 I'm going to the hospice to volunteer.
Quick question... are both of the pictures you posted pictures of you?
Quick question... are both of the pictures you posted pictures of you?
The two photos of the lumps? Yes, of course, they're both me!
The two photos of the lumps? Yes, of course, they're both me!
Thank you. HA most definitely muddies the waters, but you've got something going on for them to react. Hopefully it resolves on it's own but, to me, I'd think antibiotics would be the first course of treatment, just not sure why the delay.
Thank you. HA most definitely muddies the waters, but you've got something going on for them to react. Hopefully it resolves on it's own but, to me, I'd think antibiotics would be the first course of treatment, just not sure why the delay.
Yeah, I said to my doctor that shouldn't I have antibiotics if she didn't suspect lymphoma? But she just said no, we'll give it a week, and then I'll have an urgent referral to ENT if no improvement (and I think we can all safely say that those things aren't going anywhere in the next week). I'm not feeling great about the wait. I think I should just be referred now.
I have no symptoms of infection which I suppose is why she didn't prescribe antibiotics. I don't know what she thinks IS going on, though! She just vaguely said "they're reacting to something".
The submandibular one seems very round, like a big marble. The other one started off sort of like an almond but now that's becoming more round too. I don't really know what that means.
The submandibular one seems very round, like a big marble. The other one started off sort of like an almond but now that's becoming more round too. I don't really know what that means.
Of course you don't because you're not medically trained but please don't torment yourself by doing your own Dr Google research? I know you will though..
Does it help you to have people giving their opinion on here? you appear to have made your own mind up anyway as to your diagnosis so wouldn't you just prefer to have some help re managing your anxiety in the days ahead as you try to cope with the uncertainty?
Of course you don't because you're not medically trained but please don't torment yourself by doing your own Dr Google research? I know you will though..
Does it help you to have people giving their opinion on here? you appear to have made your own mind up anyway as to your diagnosis so wouldn't you just prefer to have some help re managing your anxiety in the days ahead as you try to cope with the uncertainty?
I am very happy to receive people's opinions, and also advice on managing the anxiety. It's really nice to have input on anything really, as I feel quite lonely.
Although I do have anxiety about this, I think I'm doing ok. I'm actually not googling that much, and I only touch the lumps once first thing in the morning. I'm a little distracted but I think still doing fine at work. I have isolated myself a bit socially though.
I just got back from volunteering at the hospice, and I tried to think that even if I have lymphoma I am still able bodied at the moment, and I am capable of helping these people who are at the very end of their lives, and helping their family members who are so sad and anxious. So I tried to stop thinking about myself and focus on these people who needed my help.
glassgirlw
22-02-20, 20:50
I am very happy to receive people's opinions, and also advice managing the anxiety. It's really nice to have input on anything really, as I feel quite lonely.
Although I do have anxiety about this, I think I'm doing ok. I'm actually not googling that much, and I only touch the lumps once first thing in the morning. I'm a little distracted but I think still doing fine at work. I have isolated myself a bit socially though.
I just got back from volunteering at the hospice, and I tried to think that even if I have lymphoma I am still able bodied at the moment, and I am capable of helping these people who are at the very end of their lives, and helping their family members who are so sad and anxious. So I tried to stop thinking about myself and focus on these people who needed my help.
I think that sounds wonderful. Very proud of you for the volunteering!!
I think it's very helpful if you can concentrate on others who really need you when there is the temptation to immerse yourself in your own angst and fears..so long as you are not mentally preparing yourself for your own demise in the same hospice...
Thank you both :)
I started volunteering at the hospice months ago, when I barely had any anxiety. I'll admit over the last few weeks the thought of me as a patient there has crossed my mind. I try not to dwell on that.
The lumps seem no bigger today. The submandibular one in particular is a little uncomfortable. It aches a bit when I move my head around or when I swallow.
I came back to check on you :-)
Was hoping you felt a little better, good to see it's not worse.
Bravo to you for your volunteer work, I feel it's good for the soul and HA lol. My volunteer work is more with kids, church and the community. Not sure I could volunteer at Hospice, I'm thinking you're more resilient then you think you are.
Thanks Nancy. I am feeling quite tearful today. My mum looked at the lumps and said it seemed very strange. I told her I thought it might be lymphoma. She asked what would happen if it was, and I said I'd probably have chemo and radiotherapy.
She seems ok and she's a very positive person. I just keep thinking of her trying to brave and strong and taking care of me without anybody to take care of her. She's 70 in a couple of months.
I love her so much and she's one of the last people in my life. I can't bear to think of her in pain, or being left with nobody.
I know you fear the worst but please don't do this to yourself. As for your Mum being 70..well, she's hardly in her nineties and you said she's a very positive person. I doubt whether she would want to see you make yourself ill again so for her sake i think you should look after your mental health and take it a step at a time. Let the GP make the decision as to what to do next. I can't see your Mum sitting back if she were truly worried.
utrocket09
23-02-20, 18:00
Thanks Nancy. I am feeling quite tearful today. My mum looked at the lumps and said it seemed very strange. I told her I thought it might be lymphoma. She asked what would happen if it was, and I said I'd probably have chemo and radiotherapy.
She seems ok and she's a very positive person. I just keep thinking of her trying to brave and strong and taking care of me without anybody to take care of her. She's 70 in a couple of months.
I love her so much and she's one of the last people in my life. I can't bear to think of her in pain, or being left with nobody.
Why would you even mention such a thing to your mother when you don't know what it is? You have have nodes that are just weird that have nothing to do with cancer.
Why would you even mention such a thing to your mother when you don't know what it is? You have have nodes that are just weird that have nothing to do with cancer.
Well, she was the one who was worried about the nodes in the first place and made me go to the doctor. Now that I've been to the doctor, she seems less worried... but I'm more so. But she's generally very chill and assumes the most favourable outcome.
This sometimes backfires, like when she didn't think my cousin would be diagnosed with cancer (she was, thymus) and when she was convinced my second pregnancy would go well.
But sometimes she's right.
You're right Pulisa, I'll let my GP do her thing... I'm not going to push her on the antibiotic front. She'll refer me to ENT soon.
Lumps seem no bigger today. The one on the side of my neck is still 2.3 cm.
I feel sick all the time, so eating is hard. That is probably anxiety, of course, but it feels very real.
I keep noticing random itches on my body, but I'm probably just hyper-aware. Last night my right arm was quite tingly / itchy. But really I still don't have any other symptoms yet. Just the lumps.
I think my doctor should refer me to ENT today instead of waiting until Friday. It seems so pointless to wait.
Well, she was the one who was worried about the nodes in the first place and made me go to the doctor. Now that I've been to the doctor, she seems less worried... but I'm more so. But she's generally very chill and assumes the most favourable outcome.
This sometimes backfires, like when she didn't think my cousin would be diagnosed with cancer (she was, thymus) and when she was convinced my second pregnancy would go well.
But sometimes she's right.
You're right Pulisa, I'll let my GP do her thing... I'm not going to push her on the antibiotic front. She'll refer me to ENT soon.
Your GP will make the decision.
I'm feeling very weak and light-headed today. My legs are a bit shaky and I get tired just walking around. I keep thinking I might faint at my desk. I've eaten two Bakewell slices, some sushi, a packet of crisps, and a fruit smoothie.
I went back to the doctor today because I've not been feeling very well. I saw a different doctor. I think she's the nicest doctor I've ever met. She was so nice I nearly cried.
She didn't think the white blood count was a problem, but agreed the lumps are concerning. She's made an urgent referral to ENT.
Her notes on the portal say:
History: very worried about lumps in neck. Tearful. Haven't changed in size, concerned it is lymphoma.
Not tender. Not unwell.
Examination: 1cm hard non mobile submandibular lump on right
1.5cm hard non mobile lump just superior to SM muscle
Diagnosis: ?lyphoma
Plan: refer ENT 2WW
Referral out Hospital Fast track referral for suspected head and neck cancer
I'd argue that the lumps are bigger than that, and that they are mobile (whether that's good or bad I don't know when it comes to lymphoma), but whatevs.
Just got to wait now. I'm trying to see this as a curve ball, an adventure, a challenge to overcome.
I'm sorry, that must be incredibly tough for you - I have no idea how I'd cope. Wishing you all the very best - got a quiet week coming up so feel free to drop me a line any time you feel like talking.
I'm sorry, that must be incredibly tough for you - I have no idea how I'd cope. Wishing you all the very best - got a quiet week coming up so feel free to drop me a line any time you feel like talking.
Thank you. I'm ok. Back at work now. In a way I feel like everything that happened a couple of years ago has prepared me for this a bit. So I think at the moment I'm coping a bit better than I would otherwise have done.
Not knowing and waiting is excruciating.
I am sorry you're going through this.
What happens now? Do you call the ENT? Do they call you? This whole waiting thing is crap.
glassgirlw
25-02-20, 13:17
I will say a prayer for you that nothing of importance is found and the nodes return to normal. Try to stay strong, I know it’s hard waiting!
Thanks guys. I feel ok at the moment, but that may change of course. Right now I feel ready to just face everything and take it as it comes. The absolute best thing will be if I stay in this mindset!
I'll get a letter in a couple of days and then I'll be able to ring ENT and book an urgent appointment. It's terribly old fashioned how we do things here in the UK. Hopeful to see the day that everything is digitalised!
Dying_Swan
25-02-20, 18:09
I'm sorry to read this and I'm sure it's a worrying time for you. I had a couple of dodgy lymph nodes years ago which caused some concern. In the end I saw a radiologist from the head & neck cancer team who specialised in neck lumps, and he was immediately able to put my mind at rest from their appearance on ultrasound (first radiologist said they were "suspicious"). They went down after a while, though I do understand how stressful it is. I think it's almost impossible to measure them accurately yourself. It's also really important to bear in mind that the 2 week referral doesn't automatically mean it's cancer, just that you've met the criteria for a specialist to have a look more quickly. Wishing you the very best, and I hope you won't have to wait long x
I'm sorry to read this and I'm sure it's a worrying time for you. I had a couple of dodgy lymph nodes years ago which caused some concern. In the end I saw a radiologist from the head & neck cancer team who specialised in neck lumps, and he was immediately able to put my mind at rest from their appearance on ultrasound (first radiologist said they were "suspicious"). They went down after a while, though I do understand how stressful it is. I think it's almost impossible to measure them accurately yourself. It's also really important to bear in mind that the 2 week referral doesn't automatically mean it's cancer, just that you've met the criteria for a specialist to have a look more quickly. Wishing you the very best, and I hope you won't have to wait long x
Thanks 🙂 glad yours were ok. I'm keeping open minded at the moment and not really prognosticating either way. Whatever the outcome I'm just going to try to be chill and take it as it comes.
My appointment at the hospital is on 10th March. Seems they take "2 week wait" very literally 🤦🏻*♀️
I'd rather go sooner so I'm going to try ringing and see if they've any earlier slots.
I still feel weirdly ok (not amazing, obviously, but then I've not felt amazing for about 3 years). My main concern still is for my parents. I'm also having a lot of trouble eating, which is what happens to me when something big happens. Still, I'm doing my best. In all other respects my life is continuing as normal, although I've been feeling a bit 'quiet' - I don't really want to see or talk to anyone apart from my mum.
The lump on the side of my neck hasn't seemed to have got any bigger over the last few days. It still doesn't hurt, but the area feels a bit achey. The submandibular node I can't really measure but in my mind at any rate it's getting bigger. It's slightly more tender than the other one, and if I roll my head back it hurts a little as if it's being stretched.
Jaw in general feels a little tight.
No fever, no sweating, no rash yet. But of course that doesn't really mean anything. I've had some itching... or, rather, a sort of skin sensitivity and prickling feeling. No insane itching yet. Again, I know that doesn't mean anything though.
Anyway, I'm just plodding along for now.
Plodding along is the very best thing you can do but it's very hard when you're waiting..Please don't google-it won't help one iota. The consultant you see will know what's going on..Dr Google won't.
I think you are approaching this in a very sensible way.
Plodding along is the very best thing you can do but it's very hard when you're waiting..Please don't google-it won't help one iota. The consultant you see will know what's going on..Dr Google won't.
I think you are approaching this in a very sensible way.
I'm actually not really googling that much! It's not as if I'm having to restrain myself either, I'm just not really feeling the temptation. Obviously I've checked a few things - symptoms, prognosis, treatment, etc - but I know that only a scan/biopsy can diagnose me, not Google.
Until I get a snazzy ultrasound probe / fine needle aspirator accessory for my phone of course 🙂
Had a big panic last night. I won't say too much about it, but it was bad. The evenings and nights are always worse, when there is no light or signs of life.
Right now I'm feeling a bit better. I told K from HR and she was lovely. She told my boss, and his boss M, and M called me info his office and said if I needed anything, any accommodations while I waited for my results etc, he would help. He said I could call him any time if I needed to talk. Everyone was so kind and understanding that I felt a lot better.
Sometimes I think everything feels worse because I get so lonely. And when I am shown kindness it sort of heals me for a bit.
I couldn't sleep on my right side last night because although the lumps are painless the surrounding area aches now. It's started radiating into my ear. I had some sort of weird out of body experience.
My eating has deteriorated and I can no longer eat solid food. I chew and chew until it's a mush and then when I try to swallow I gag. Instead, I'm drinking lots of high calorie shakes and smoothies, and yoghurts.
My appointment is on Monday now.
I'm so glad you're getting in on Monday.
Hang in there..
I'm so glad you're getting in on Monday.
Hang in there..
Thanks Nancy. I'm working from home today.
Something I thought I noticed yesterday, and which I still think I'm noticing today: it seems a bit like the node on the side of my neck is... less pronounced, maybe? I'm really scared to give myself false hope, because I know that the fall from a position of hope is all the more devastating, but it just sort of seems slightly... flatter? However, it is still the same length. 2.3cm. So I don't know what that means. Maybe it's just sort of tethered and being pulled closer to the muscle idk.
The submandibular node is still ****ing enormous, it's like a massive marble just sitting there. A bit sore in the surrounding area, but everything feels sore atm from muscle tension and clenching my jaw etc.
Also, and apologies for sounding fully cray right now, but the last two nights my dead dog has 'visited' me. I've been lying in bed, just waking up, and I've heard him run across the floor, leap onto the bed, and I've felt him land, and then his little snuffly nose kissing my neck. Then I wake up properly and obviously he's not there but I literally heard and felt him like it was real.
Diagnosis can't come fast enough in my opinion, I often wonder what this anxiety overload does to us internally. Nothing good I'm positive of it.
One of the possibilities my son's ENT gave him was a blocked salivary gland. I'm really wondering if that's what you've got going in that submandibular area, they are not uncommon.
Diagnosis can't come fast enough in my opinion, I often wonder what this anxiety overload does to us internally. Nothing good I'm positive of it.
One of the possibilities my son's ENT gave him was a blocked salivary gland. I'm really wondering if that's what you've got going in that submandibular area, they are not uncommon.
I don't THINK it's salivary gland related, because from the "mouth side" everything is normal - there's no sign of the lump from inside my mouth. No soreness or anything. It's just from the other side, under my chin, that there's this massive thing.
Still, I can't hope helping it's something equally as harmless. The submandibular lump came up about a week after the neck lump (that I noticed) though I suppose it was growing before then too. I only noticed it because it actually became pretty tender for a few days, but that went away quickly.
Anyway, not long to wait now.
I don't THINK it's salivary gland related, because from the "mouth side" everything is normal - there's no sign of the lump from inside my mouth.
My son had nothing inside his mouth either and it was a benign salivary gland issue.
My son had nothing inside his mouth either and it was a benign salivary gland issue.
Ah really that's interesting. Well, that would be a super outcome! Doesn't explain the other neck lump but as I say that one seems... less engorged, perhaps? Idk. Same size, but flatter, if that makes sense 🤷🏻*♀️
We're guessing at best, our bodies so all sorts of weird and alarming things that end up not to be a big deal in the end. It's just miserable in our minds
I was totally imaging the neck lump being smaller. It's no smaller, it's just the position my neck was in. So, back to square one on that front.
DarkSkies18
28-02-20, 15:52
Hi there! I really needed to chime in here. I'm no stranger to health anxiety and I have been through my own lymphoma worries- which until I came to this site, had no idea how common they were. My health anxiety began after the birth of my second daughter who was born with a rare syndrome putting her at risk for seizures, strokes, and delays. She has not had ANY of these symptoms and has been doing wonderfully, yet the anxiety ate away at me for 4 years wondering when the "day would come". Somehow this transferred to my own health, worrying what if something happened to me and I left my daughters. Similar to how you feel with your parents in a way.
Anyways, I feel for you and I sympathize with you. The more you post, the more it sounds to me that you are coming to terms with a diagnosis you do not have yet. Although it's quite impossible to tell our anxiety to scram in an instance where you are awaiting tests and results, remember that as of right now, nothing has been diagnosed.
I also wanted to share with you a story about my coworker. She went in for routine blood tests which sent her to a hematologist. Her white bloods or red bloods were way off (can't really remember) but she also had an enlarged spleen and the doctor came out and said they were concerned about lymphoma. Because she didn't have any enlarged lymph nodes visible to biopsy she had to have a bone marrow test....which came back negative for lymphoma, etc.
I'm sorry for the long post, but just because the doctor is doing their job (very well) and indicating they want to rule something out, does not mean it is so.
Also wanted to mention that when I had two scares with health anxiety, 2 things happened. I lost my appetite completely, and I realized that our bodies produce psychosomatic symptoms. Our minds are powerful. The more we believe something, the more it can physically manifest (bodily speaking of course) lol.
I wish you the best with your tests and will be thinking of you. It is a stressful time of course.
Hi there! I really needed to chime in here. I'm no stranger to health anxiety and I have been through my own lymphoma worries- which until I came to this site, had no idea how common they were. My health anxiety began after the birth of my second daughter who was born with a rare syndrome putting her at risk for seizures, strokes, and delays. She has not had ANY of these symptoms and has been doing wonderfully, yet the anxiety ate away at me for 4 years wondering when the "day would come". Somehow this transferred to my own health, worrying what if something happened to me and I left my daughters. Similar to how you feel with your parents in a way.
Anyways, I feel for you and I sympathize with you. The more you post, the more it sounds to me that you are coming to terms with a diagnosis you do not have yet. Although it's quite impossible to tell our anxiety to scram in an instance where you are awaiting tests and results, remember that as of right now, nothing has been diagnosed.
I also wanted to share with you a story about my coworker. She went in for routine blood tests which sent her to a hematologist. Her white bloods or red bloods were way off (can't really remember) but she also had an enlarged spleen and the doctor came out and said they were concerned about lymphoma. Because she didn't have any enlarged lymph nodes visible to biopsy she had to have a bone marrow test....which came back negative for lymphoma, etc.
I'm sorry for the long post, but just because the doctor is doing their job (very well) and indicating they want to rule something out, does not mean it is so.
Also wanted to mention that when I had two scares with health anxiety, 2 things happened. I lost my appetite completely, and I realized that our bodies produce psychosomatic symptoms. Our minds are powerful. The more we believe something, the more it can physically manifest (bodily speaking of course) lol.
I wish you the best with your tests and will be thinking of you. It is a stressful time of course.
Thanks so much for your message.
Yeah, the not eating is definitely anxiety.
Unfortunately, I think the rest is quite rational and not anxiety based. The submandibular lump in particular. It doesn't even feel like a lymph node, really, just feels like the whole gland is big and hard. It is round, I think, but it doesn't move. It is not mobile. It doesn't hurt.
I am not sure what else could cause this kind of a mass, particularly when coupled with the other node. The other node by itself is more explainable - it seems smaller, more oval, more mobile.
The two together really are pointing to one thing to me, and I don't think that's anxiety speaking.
I really, really want to be strong enough to handle the outcome.
DarkSkies18
28-02-20, 17:00
Definitely not trying to say enlarged lymph nodes are due to anxiety. I mean other symptoms like loss of appetite and fatigue. While of course I think the doctors are doing the right thing by ordering the ultrasounds etc. I am just saying it doesn't mean they are certain you have cancer. While to you, it may seem like it's only pointing to one thing- the reality is our bodies do very weird things, and there could be many other outcomes or causes. Sounds like you have a very good doctor who will get to the bottom of it though. Good luck with everything!
Definitely not trying to say enlarged lymph nodes are due to anxiety. I mean other symptoms like loss of appetite and fatigue. While of course I think the doctors are doing the right thing by ordering the ultrasounds etc. I am just saying it doesn't mean they are certain you have cancer. While to you, it may seem like it's only pointing to one thing- the reality is our bodies do very weird things, and there could be many other outcomes or causes. Sounds like you have a very good doctor who will get to the bottom of it though. Good luck with everything!
Yeah, you're right. And I think I'm being seen pretty much as quickly as I could have been (in our UK system, anyway!) By Monday it will be 5-ish weeks since I noticed the first lump (I really can't remember when it was exactly) and they don't refer until a lump has been enlarged for 3 weeks anyway, so... my doctor and I have done the best we can here.
WiseMonkey
28-02-20, 22:29
All the best for Mondays visit, you are taking the right course of action by getting this checked out.
I will be very surprised if it's anything serious, I think it's far more likely to be an autoimmune response to perceived inflammation which is very common with autoimmune conditions. You probably know that the autoimmune system perceives inflammation (as infection) then attacks itself. This can in turn cause inflammation, so a vicious cycle really!
All the best for Mondays visit, you are taking the right course of action by getting this checked out.
I will be very surprised if it's anything serious, I think it's far more likely to be an autoimmune response to perceived inflammation which is very common with autoimmune conditions. You probably know that the autoimmune system perceives inflammation (as infection) then attacks itself. This can in turn cause inflammation, so a vicious cycle really!
I'm not sure about the autoimmune thing, because the lumps came up WHILE I was on immune treatment (fertility related thing). I was on 20mg prednisolone a day and inflammation in my body was looooow af. All my hormones had normalised due to the improvement in inflammation. And these lumps came up anyway!
I really hope not to surprise you on Monday, though.
My boss' boss emailed me such a lovely message. He knows what I've been thinking, and sadly his own wife died from cancer recently. He said:
"Hello Jenny,
How have you been today? Just a brief note to reiterate our brief conversation yesterday. Here for a chat, support, help where I can be. Even if that is just to listen. Sending warm wishes.
Take care and you have my number over the weekend if it would be helpful in any way."
I am so lucky that he is so kind.
My whole jaw feels sort of tight and achey, even though there is no swelling at all apart from the two nodes. All my other glands and nodes feel completely normal, but there is just this sense of pressure. It is radiating into my right ear. What is that?
There is even some pressure on the left side.
I don't know what that means. Is it just because my jaw has been tense, and I've been clenching it maybe? It almost feels like my ear is swollen but it isn't at all.
It feels like the area should be sore to the touch... but it isn't. The bit I hate the most is the big, hard, immobile lump in my submandibular gland. It has grown unmistakably in the last two weeks. The one on my neck does not appear to have grown.
I so wish this was over for you. I'm not even sure if Monday's appointment will help, thinking of my son, the ENT said he thought it was a blocked salivary gland and sent him off for a CT scan with contrast.
More waiting.
It's just miserable.
Hopefully the ENT feels it's bacterial and an antibiotic will get rid of it. Don't freak if he sends you for a CT scan though that is the typical course.
Just read through all 12 pages of this thread. You post with so much courage and dignity. It's inspiring.
Will continue to follow this thread and wish you nothing but the best :)
Thank you Nancy and Jase.
Only a day to go now.
The doctor gave me some diazepam for tomorrow so maybe that will help a bit.
Dying_Swan
01-03-20, 22:45
All the very best for tomorrow. Really hope you'll get good news x
Me too. I do hope you get some clarity and an expert professional opinion which you can accept.
ShaunRyder
02-03-20, 09:29
Hope everything goes well today.
Crossing everything for you!
Thanks. Looking forward to my diazepam.
I had a dream that an ENT clinic on a train scanned the lumps. They scanned the submandibular lump first and said it was full of bird flu. If it ruptured I'd turn into a sort of zombie and start biting and infecting everyone. That might happen even if it didn't rupture.
The other lump was cancer.
I got really worried that the bird flu would suddenly take me over and I'd attack my mother.
Well, I'm here and waiting. Loaded up on diazepam and codeine for the potential biopsy pain (don't worry, I never take this stuff, it was left over from my hysteroscopy and I didn't even take it then) so at this precise moment I'm feeling quite relaxed. Just need this high to carry on for the next hours.
So that was deeply unsatisfactory. He felt the nodes and said that they were suspicious, particularly since there were two of them.
However, because he can't be 100% sure of cancer he can't refer me immediately for a scan and biopsy. I have to wait another two weeks. He would not say either way whether he suspected cancer or not.
I am not good at waiting. I know I should be stronger, more robust, more resilient, but I'm not. It's like a shroud tightly around me and I cannot escape.
Obviously I will be making phone calls to try to speed up the appointment.
For now I feel ok due to the diazapan and codeine, and I'm going to try to take advantage of that and eat. I know in a few hours it will have worn off.
This needs resolution, one way or another.
Please don't beat yourself up over this? It's an awful situation and anybody would be terrified in your position.
I'm sorry it went so badly.
Dying_Swan
02-03-20, 15:13
Sorry to hear you didn't get any answers today. I think anyone would feel the same in this situation, and waiting is the hardest part. I would do exactly the same and try to expedite the next appointment. It doesn't make you weak, it makes you human.
When I was going through my journey, the doctor felt the nodes in my neck were suspicious. I went through two rounds of antibiotics over the course of 6 weeks. After they did nothing and the nodes actually measurably grew, it was an immediate scan (within hours) and an appointment with an ENT for a biopsy within 5 days. I asked the ENT if he thought it was cancer. The ENT didn't pull any punches saying he believed it was cancer. He just didn't know what kind. The biopsy confirmed it and determined the type.
Its actually encouraging that they're waiting as doctors, if they're really that concerned, would not hesitate to refer you.
Positive thoughts
That's really some shit. 🤬😡
I knew you wouldn't have a definite answer but felt sure you'd have make progress today. I am sorry.
Thanks everyone.
He did say he does not suspect infection. He said they're either randomly reactive for indeterminate reasons, or it could be a malignancy. The two of them together were cause of concern.
I'm waiting for my meds to wear off and hoping I don't completely distintegrate once they do. At least I've managed to eat some toast and cheese and soup.
When I was going through my journey, the doctor felt the nodes in my neck were suspicious. I went through two rounds of antibiotics over the course of 6 weeks. After they did nothing and the nodes actually measurably grew, it was an immediate scan (within hours) and an appointment with an ENT for a biopsy within 5 days. I asked the ENT if he thought it was cancer. The ENT didn't pull any punches saying he believed it was cancer. He just didn't know what kind. The biopsy confirmed it and determined the type.
Its actually encouraging that they're waiting as doctors, if they're really that concerned, would not hesitate to refer you.
Positive thoughts
It seems sucky that they wasted 6 weeks putting you on antibiotics.
That's the kind of thing I'm worried about.
It was 4 weeks at least from noticing the lumps that I got referred. Another week waiting for the referral. Now another 2 weeks until I'm scanned and biopsied. Then what? Another week before I have a full body scan? Another week or longer until I start treatment?
It's going to end up being at least two months from the onset of noticeable symptoms before I'm treated. If this is a fast growing cancer (which I'd assume considering the submandibular lump seems to doubled in size in the last two weeks) it could have progressed a lot by then.
It seems sucky that they wasted 6 weeks putting you on antibiotics.
That's the kind of thing I'm worried about.
It was 4 weeks at least from noticing the lumps that I got referred. Another week waiting for the referral. Now another 2 weeks until I'm scanned and biopsied. Then what? Another week before I have a full body scan? Another week or longer until I start treatment?
It's going to end up being at least two months from the onset of noticeable symptoms before I'm treated. If this is a fast growing cancer (which I'd assume considering the submandibular lump seems to doubled in size in the last two weeks) it could have progressed a lot by then.
IF, and the saying is "Its not cancer until they say it is", a few weeks or a month will not make or break anything. I caught a sinus/cold infection thing in August of 2012.... swollen glands on both sides of my neck, sinus gook, the whole nine yards. It wasn't going away so I went to the doctor in mid September and that was the first round of antibiotics. The swelling went down and the infection cleared but there was still one node on one side that remained. The doctor said to wait a couple of weeks to see if it would resolve. It didn't. I happened to have my 2nd heart attack in October and when I went to the doctor for the follow up in late October, I showed him the node. So that was the second and stronger round of antibiotics. They did nothing. In fact the node grew noticeably. I was diagnosed November 2012 just before Thanksgiving. Had my first surgery a month later before Christmas, my 2nd in Early Feb of 2013 and didn't actually start treatment until March and I was diagnosed Stage IVa Head and Neck cancer. All along due to Dr Google I thought it was lymphoma too and after reading up on my diagnosis, I kind of wish it was as what I had was far worse with really poor prognosis and survival rates. But here I am now 7 years out and cured so.....
I was pretty stressed by it all and I'm not a sufferer so I can only imagine what you must be going through but I'll say it again.... The fact they didn't urgently refer you is encouraging. Obviously, there's something going on but you have many factors including gender and age that are in your favor and again. "Its not cancer until they say it is".
Positive thoughts
IF, and the saying is "Its not cancer until they say it is", a few weeks or a month will not make or break anything. I caught a sinus/cold infection thing in August of 2012.... swollen glands on both sides of my neck, sinus gook, the whole nine yards. It wasn't going away so I went to the doctor in mid September and that was the first round of antibiotics. The swelling went down and the infection cleared but there was still one node on one side that remained. The doctor said to wait a couple of weeks to see if it would resolve. It didn't. I happened to have my 2nd heart attack in October and when I went to the doctor for the follow up in late October, I showed him the node. So that was the second and stronger round of antibiotics. They did nothing. In fact the node grew noticeably. I was diagnosed November 2012 just before Thanksgiving. Had my first surgery a month later before Christmas, my 2nd in Early Feb of 2013 and didn't actually start treatment until March and I was diagnosed Stage IVa so...
I was pretty stressed by it all and I'm not a sufferer so I can only imagine what you must be going through but I'll say it again.... The fact they didn't urgently refer you is encouraging. Obviously, there's something going on but you have many factors including gender and age that are in your favor and again. "Its not cancer until they say it is".
Positive thoughts
Thanks Fish. I don't know if yours was fast growing, but do you think it could have progressed quickly to stage IV during that time when they were faffing around? It seems like yours could have moved quickly in just a few months. Obviously the main thing is that you're doing ok now, which is fantastic.
I know that the 30s is a classic age for lymphoma, although being female gives me a small advantage I'll admit.
Still high on diazapam and codeine so feeling more impatient than anxious. I'm sure that'll wear off soon.
Thanks Fish. I don't know if yours was fast growing, but do you think it could have progressed quickly to stage IV during that time when they were faffing around? It seems like yours could have moved quickly in just a few months. Obviously the main thing is that you're doing ok now, which is fantastic.
I know that the 30s is a classic age for lymphoma, although being female gives me a small advantage I'll admit.
Still high on diazapam and codeine so feeling more impatient than anxious. I'm sure that'll wear off soon.
I always say... "Cancer is an uncontrolled growth of abnormal cells. It doesn't come and go nor does it stop once it starts".
When my initial infection cleared, the node that remained was the size of a small grape. By the time I was diagnosed (three months later) it was at least double the size and by the time I went in for surgery, it looked like I had the mumps on the left side of my neck. And no, I was told I probably had it for at least a year prior to showing any signs. They removed two 5+cm cancerous nodes in Feb of 2013. You talking about something you noticed a month ago and have been pretty stable. So again, encouraging signs.
Positive thoughts
Dying_Swan
02-03-20, 18:23
When I first noticed my dodgy nodes, the GP said "yeah, might be lymphoma. Let's wait 6 weeks and see what happens" (so I saw a different GP). That was October, and I didn't get the "all clear" until January. Friend of mine who had lymphoma didn't get it looked at for a month and then had to wait for biopsy and treatment. Years on, she is alive and well, and lymphoma-free. They don't always move as quickly as we'd like them to unfortunately, although I know that if I was in your shoes I'd be going out of my mind. I think FMP's post is really encouraging and worth reading again whenever you feel panicked. You could also consider going back to the GP a) to see if they can speed up your appointment, and b) to ask for a bit more diazepam (just a small amount) to help you through the next couple of weeks, if you think that might help.
I always say... "Cancer is an uncontrolled growth of abnormal cells. It doesn't come and go nor does it stop once it starts".
When my initial infection cleared, the node that remained was the size of a small grape. By the time I was diagnosed (three months later) it was at least double the size and by the time I went in for surgery, it looked like I had the mumps on the left side of my neck. And no, I was told I probably had it for at least a year prior to showing any signs. They removed two 5+cm cancerous nodes in Feb of 2013. You talking about something you noticed a month ago and have been pretty stable. So again, encouraging signs.
Positive thoughts
Yeah, I'm glad the neck one doesn't seem to have grown in maybe the last 4 weeks. I honestly can't remember how big it was when I first noticed it because I wasn't very worried about it. But I don't THINK it's grown.
The submandibular one has definitely grown. I noticed it a week after the first one, due to tenderness, but the tenderness quickly went away. Two weeks ago it couldn't be seen if I tilted my head back. Now, it can be clearly seen if I tilt my head back. I'd say it's almost doubled in size in the last two weeks.
I'll see how they progress over the next two weeks while I wait for my ******* scan and biopsy.
WiseMonkey
02-03-20, 20:11
Are you in the public health system or going privately as it definitely makes a difference? The whole idea of going to an ENT clinic is that they do all the tests there on the spot. However, if a node was suspicious (and you'd a fine needle aspiration) you'd still have to wait for the results. You mentioned a 'full body scan', well you wouldn't be having one of these unless the biopsy showed malignancy.
I also don't like waiting, so I hope you're successful in getting an earlier appointment.
You mentioned a 'full body scan', well you wouldn't be having one of these unless the biopsy showed malignancy.
True. After my diagnosis I had a PET scan where they injected radioactive isotopes that adhere to cancerous cells to see if it had spread.
Positive thoughts
Are you in the public health system or going privately as it definitely makes a difference? The whole idea of going to an ENT clinic is that they do all the tests there on the spot. However, if a node was suspicious (and you'd a fine needle aspiration) you'd still have to wait for the results. You mentioned a 'full body scan', well you wouldn't be having one of these unless the biopsy showed malignancy.
I also don't like waiting, so I hope you're successful in getting an earlier appointment.
Yeah, I'm on the NHS. I did consider going privately but I'd need to see another consultant and then get the scan and biopsy and maybe that would take two weeks all in all anyway.
I was under the impression they'd do everything today and I'd get the results of the biopsy today but nope.
Yeah, I'm on the NHS. I did consider going privately but I'd need to see another consultant and then get the scan and biopsy and maybe that would take two weeks all in all anyway.
I was under the impression they'd do everything today and I'd get the results of the biopsy today but nope.
That is exactly what I'm referring to. If indeed, they truly suspected something sinister, regardless of the health system, you would have been fast tracked for further testing. Even socialized health systems know the deal ;)
Positive thoughts
That is exactly what I'm referring to. If indeed, they truly suspected something sinister, regardless of the health system, you would have been fast tracked for further testing. Even socialized health systems know the deal ;)
Positive thoughts
The 2 week wait IS considered fast tracked for the UK. Things are not speedy over here, which is why our cancer diagnosis times are so shit.
Any patient suspected of cancer is referred using the 2 week wait system - unless they're literally obviously dying in which case they're off to A&E.
From seeing the ENT, he has two options - immediate treatment for people he knows has cancer (70 year old smoker with 6cm neck lump was his example) and then the fabled 2 week wait again for people with suspected cancer but for whom it is not 100% guaranteed.
And that's me.
The UK, ladies and gentlemen! Can't wait until Brexit fixes everything oh wait.
Dying_Swan
02-03-20, 20:59
I went private initially for my lymph nodes. Meanwhile I saw another consultant for a different part of my body, who happened to be head of some sort of cancer network, and I told him about the nodes. His advice was that it was better to be in the NHS due to the 2 week target, which doesn't exist within the private sector. You could certainly look at taking the private route, and it might speed things up, but equally things could end up taking longer. Perhaps worth investigating anyway to see which is the best route for you, but just thought I'd mention the advice I was given.
I went private initially for my lymph nodes. Meanwhile I saw another consultant for a different part of my body, who happened to be head of some sort of cancer network, and I told him about the nodes. His advice was that it was better to be in the NHS due to the 2 week target, which doesn't exist within the private sector. You could certainly look at taking the private route, and it might speed things up, but equally things could end up taking longer. Perhaps worth investigating anyway to see which is the best route for you, but just thought I'd mention the advice I was given.
Thanks, yeah, that's what I was thinking. It sounds rather galling to pay hundreds of pounds to see ANOTHER consultant, then probably still wait a bit for the scan and biopsy, whereas in 2 weeks max I'll be getting my scan and biopsy for free on the NHS.
Plus all the phone calls, the layers of personnel, the explaining myself over and over, the no guarantees... it's stressful.
I will forever not understand the "2 week" wait. (And that's a fast track??)
If you're waiting for something to get better on it's own, ok, but if there's something that needs to be seen, why wait?
What is the point?
Torture?
WiseMonkey
03-03-20, 03:38
I will forever not understand the "2 week" wait. (And that's a fast track??)
If you're waiting for something to get better on it's own, ok, but if there's something that needs to be seen, why wait?
What is the point?
Torture?
The problem is that the NHS in England is maxed out with a large population and inadequate resources and it doesn't sound much better in the private sector.
It's the same down here in New Zealand even with a small population, the DHB's (state district health boards) are overloaded and under-staffed. However, if your have private insurance things move more quickly.
Many of the private specialists also work part time in the public hospitals, such are the requirements and shortages.
In NZ when a National government (Conservative) gets elected, the first funding cuts they make are to health and education so when they get voted out these two institutions are a shambles, so when the Labour govt gets elected they inject more funding into health and education to try and improve things ... it's a vicious cycle!
Meanwhile the general populous who are in the state system have to suffer delays often to their detriment :(
Scan and biopsy now Friday! (I hope)
Scan and biopsy now Friday! (I hope)
How did this come about?
How did this come about?
I just basically said I wanted to come in sooner than 2 weeks, and I was given an appointment on Friday instead.
I'm hoping for no more hold ups on Friday.
As I said, the lump on my neck SEEMS to have remained the same size over the last 5 weeks or so.
The submandibular lump, which I guess I noticed about 4 weeks ago, has been steadily growing since then.
I've even considered the possibility that the submandibular lump is some sort of cancer and the other lump is just a normal node reacting to the sudden massive tumour in my jaw.
But no point speculating. Nobody can know, not even the consultant, until I have the biopsy.
I just basically said I wanted to come in sooner than 2 weeks, and I was given an appointment on Friday instead.
That gives me hope for the NHS. Glad you're getting in sooner, for no other reason but shortening the torture of waiting.
I don't know everything that can go wrong with submandibular lymph nodes or submandibular salivary glands but I do know they can look bad and be benign.
WiseMonkey
03-03-20, 21:20
Scan and biopsy now Friday! (I hope)
Well done with your powers of persuasion ... hope all goes well :)
Doing ok today. Not exactly anxious, just sort of detached... just a bit sort of **** everything.
I'm working from home, and I'm doing ok with the easy tasks but I can't seem to muster the energy to do any research based tasks.
I have a headache on the same side as the lumps, which sort of starts at the back of my jaw/ear and radiates up into the eye socket. Don't know if that's related or just random.
Lump on side of neck still seems the same size and is about twice as long as it is wide. Submandibular lump seems about 2x2cm at least, although I can't really measure.
ThirstyMMM
04-03-20, 14:46
Doing ok today. Not exactly anxious, just sort of detached... just a bit sort of **** everything.
I'm working from home, and I'm doing ok with the easy tasks but I can't seem to muster the energy to do any research based tasks.
I have a headache on the same side as the lumps, which sort of starts at the back of my jaw/ear and radiates up into the eye socket. Don't know if that's related or just random.
Lump on side of neck still seems the same size and is about twice as long as it is wide. Submandibular lump seems about 2x2cm at least, although I can't really measure.
Hey O_O!
Been following your story and glad you’re now well on the path to finding out what the story is. Stay strong like you have been already, and it will all work itself out. We’re with you to support you!
As for your lumps, have they visibly swelled/puffed out so much that they are visibly protruding from the skin without having to bend your neck to see them? Or are they under the skin without any noticeable swelling?
I’ve been in a downward spiral myself after having found two lumps halfway along my jaw, about 2cm down from the jawbone, located in the same spot on opposite sides. I’m trying to reassure myself they are simple submandibular salivary glands that a majority of people can feel, as they haven’t visibly swelled at all to protrude from the skin, but my mind is just wrecked with anxiety.
Hey O_O!
Been following your story and glad you’re now well on the path to finding out what the story is. Stay strong like you have been already, and it will all work itself out. We’re with you to support you!
As for your lumps, have they visibly swelled/puffed out so much that they are visibly protruding from the skin without having to bend your neck to see them? Or are they under the skin without any noticeable swelling?
I’ve been in a downward spiral myself after having found two lumps halfway along my jaw, about 2cm down from the jawbone, located in the same spot on opposite sides. I’m trying to reassure myself they are simple submandibular salivary glands that a majority of people can feel, as they haven’t visibly swelled at all to protrude from the skin, but my mind is just wrecked with anxiety.
Hey, yeah, those are just your submandibular glands 🙂 that's exactly what they feel like, the same sized gland either side. I saw your post, and you honestly have nothing to worry about. They're glands. They're the same both side. Everyone has them. It would be much weirder if you didn't have them.
I have one lump within one of the submandibular glands, and one on the side of my neck. They are visibly protruding, although they're not particularly noticeable if I keep my head straight. I think lumps don't become very obvious until they're over 3cm or so.
I had a bad night, bad dreams.
I've started to wonder whether this isn't lymphoma / primary cancer but actually a metastasis from somewhere else. I know that submandibular cancers are most likely to be a metastatis.
Maybe my pelvis.
I'm worried about this because it would make the prognosis worse.
I know that submandibular cancers are most likely to be a metastatis.
No you don't.
We are coming up on the 1 year anniversary of my son having surgery to remove a salivary gland. I was absolutely beside myself during this whole process. I literally had to adopt a short prayer to repeat in my head over and over and over to block out the horrid thoughts and visions going through my mind.
No matter what you read, think, hear, see, you are speculating.. you do NOT know.
(The torture of waiting continues, I hate this for all of us)
Some bad news. There are actually two submandibular lumps, right next to each other. The new one is slightly smaller.
I'm pretty sure the second wasn't always there and must have come up fairly recently.
That's two submandibular lumps right next to each other, and one lump on the side of my neck.
WiseMonkey
05-03-20, 21:51
I had a bad night, bad dreams.
I've started to wonder whether this isn't lymphoma / primary cancer but actually a metastasis from somewhere else. I know that submandibular cancers are most likely to be a metastatis.
Maybe my pelvis.
I'm worried about this because it would make the prognosis worse.
You need to analyse this logically, anything sinister from the pelvis would go the nearest lymph nodes (groin/pelvis and structures) not travel all the way to the salivary glands. By the time anything reached the salivary/neck glands, you'd be really sick and have other symptoms plus indicators in your blood work, so it's not that! Where did you read that mandibular cancers are most likely to be a metastasis?
On Friday you should have more information.
Dreams mean nothing, there's just a manifestation of your subconscious thoughts.
All the best tomorrow. Please let us know how it went.
ThirstyMMM
06-03-20, 08:28
Thank you so much for the reassurance, it helps to know I’m not alone here. Except now a lingering tickling dry cough is worrying me thinking there is something in my chest, and I’m in a spiral again! Grrrr!
Lymph nodes have always confused me as when people say they are enlarged, I don’t know if it means they have to be visibly swelled under the skin. I guess that is what would normally bring it to people’s attention.
I hope your consultation/scan/biopsy goes well, and you can finally find some relief. :)
Guys, I have great, amazing news. They are 99% sure I do not have cancer.
After seeing my GP and my consultant, both of whom were quite evidently concerned, I was very prepared for a bad diagnosis. Coupled with the multiple right-sided cervical lumps, three of which were particularly noticeable, painless, immobile in some cases, I was struggling to find an alternative diagnosis more likely than cancer. I truly do not believe this was my health anxiety taking over. My anxiety was not excessive - only what might be expected based on on the circumstances, and the feedback from my GP and consultant.
Today I saw a second consultant who scanned my neck. He found multiple enlarged nodes, and the one on the side of my neck in particular was suspicious. It was round, black, and 1cm on its shortest axis. He told me a diagnosis of lymphoma was possible but that only a biopsy would confirm.
They did the biopsy immediately and half an hour later I was called back in.
The consultant immediately told me that there was no sign of cancer after all and that the only signs were of reactive nodes. He is 99% sure this is the case. He doesn't know why this could have happened but thinks it could be viral and has sent me for a blood test.
I will see him again in two months, unless the nodes increase in size or more appear in this time.
I was completely prepared for a cancer diagnosis - as was my GP and consultant, and probably several people on here, I believe! - and I'm just so shocked by this good news. I'm just coming to terms with it.
I think everyone worried about lymphoma should read this thread, particularly those with miniscule nodes who can only feel them if they poke at at their necks for hours. If I can have multiple, hard, painless nodes, large enough to visibly protrude from the skin, and still not have cancer, then... everyone else's tiny little nodes are probably fine too.
Also, measuring is pointless as Fish said. I was sure my neck node was 1.3cm wide, but it was only 1cm.
The 'massive' submandibular one was not as big as I thought, and I was feeling a lot of surrounding flesh that made it seem bigger.
Thanks so much for everyone's support on here.
Ohhh, congratulations, that's wonderful news! You've been so brave over this, and you should be proud of yourself.
Ohhh, congratulations, that's wonderful news! You've been so brave over this, and you should be proud of yourself.
Thank you! I think the vast quantities of diazepam I took this morning (plus some codeine for the biopsy) probably helped. All prescription meds now relegated to the back of my cupboard again you'll be glad to hear!
Dying_Swan
06-03-20, 11:11
Absolutely brilliant news! What a huge relief for you. Hopefully now you can move on. I think you've dealt with all this admirably and you should be proud of yourself.
glassgirlw
06-03-20, 11:29
This is fantastic news! Everyone is right, you handled this amazingly well. You should be so very proud of yourself!
Pleased you've got good news and hope you can move on from all this and get on with your life now. You handled situation well ;)
TYS Status: Issued
Now THIS is what I wanted to hear this morning!!
Amazing that you hot a biopsy this morning and results immediately, I've never heard of that.
So happy for you!!
ThirstyMMM
06-03-20, 12:58
That is amazing news! I am so happy for you that you not only got the results so quickly, but more importantly it was all positive news!
You’re so well articulated and have been level headed throughout what has been a stressful time, so you should be proud! :)
I just hope I can get over my current worries about my nodes/submandibular salivary glands/dry cough. My doctor gave me some ventolin and as a secondary option he even referred me for an x-ray of my chest if my cough doesn’t improve in time, but I don’t like the radiation associated with x-rays (no matter how small), so will keep it as a backup option. I’m heading overseas for a week and a bit, so if it hasn’t improved will pursue this as a potential scan.
That’s awesome news so glad to see it turned out not to be cancer!
Great news! You handled everything like a champ! I’ve been keeping tabs on the thread but everyone had given you excellent advice so I didn’t have anything more to add before. I have been thinking of you though! I’m so happy for you!! Go and celebrate!
Thanks so much everyone 🙂 I just fell asleep for two hours as soon as I got home.
I was just so sure it had to be lymphoma. Not even in a HA way, just based on all these very convincing symptoms, plus what my doctors had indicated. Yesterday when I realised that there were even more nodes than I thought I was just like... well, there's no doubt about it now.
Just out of curiosity, what did everybody think? I didn't ask at the time as I was so certain that I wasn't even bothered with reassuring seeking, but now I'm curious to know if everyone was looking at this the same way as me!
I'm not an expert on these things and I had no idea what other conditions it could have been, but I think anybody would have been inclined to think it was lymphoma. I was worried for you.
I'm not an expert on these things and I had no idea what other conditions it could have been, but I think anybody would have been inclined to think it was lymphoma. I was worried for you.
Glad it wasn't just me being paranoid, I didn't think it was in this case!
Anyway I'm back to see the consultant in two months - or sooner if the nodes get bigger or more grow.
Hopefully by then he'll know what sort of viral thing we're dealing with, if it's that. As long as it's not HIV - which I don't think it can be as I had a clear HIV test eight weeks or so after the time I had unprotected sex. And the guy seems fine (as does the one since, and it wasn't unprotected with him anyway).
Brilliant news, so pleased to read it.
I had read through your thread a couple of days ago but not commented. I didn’t think it was anything bad, I don’t know why but possibly because I’m a bit ignorant about lymph nodes. I’m so pleased for you.
WiseMonkey
06-03-20, 19:36
Thanks so much everyone I just fell asleep for two hours as soon as I got home.
I was just so sure it had to be lymphoma. Not even in a HA way, just based on all these very convincing symptoms, plus what my doctors had indicated. Yesterday when I realised that there were even more nodes than I thought I was just like... well, there's no doubt about it now.
Just out of curiosity, what did everybody think? I didn't ask at the time as I was so certain that I wasn't even bothered with reassuring seeking, but now I'm curious to know if everyone was looking at this the same way as me!
Well, great news and I'm not surprised as I didn't think you had lymphoma for 1 minute! Although there were raised nodes, there were no other typical symptoms.
However, I do know people who sometimes have raised lymph nodes who have various autoimmune conditions ... the nodes appear then retract according to how their system is coping at the time.
Did you mention about the steroid treatment you had (related to your fertility issue), did he think there could be a connection?
I'm glad you will have a happy weekend :)
You're right about the submandibular glands, when they come up they can feel like marbles ... the one I had last year felt just like one and was not as big as I thought! It started to go down after about 6 weeks.
Well, great news and I'm not surprised as I didn't think you had lymphoma for 1 minute! Although there were raised nodes, there were no other typical symptoms.
However, I do know people who sometimes have raised lymph nodes who have various autoimmune conditions ... the nodes appear then retract according to how their system is coping at the time.
Did you mention about the steroid treatment you had (related to your fertility issue), did he think there could be a connection?
I'm glad you will have a happy weekend :)
You're right about the submandibular glands, when they come up they can feel like marbles ... the one I had last year felt just like one and was not as big as I thought! It started to go down after about 6 weeks.
Yes, I mentioned the nodes came up around the time I started taking the immunosuppressant treatment, and he wasn't sure of a connection.
What it COULD be is that my immune system was so suppressed that it allowed me to catch some weird symptomless viral infection that made my nodes swell.
I've had the main submandibular lump for about five weeks now so hopefully it'll bugger off soon, as it's a bit uncomfortable. It also looks ugly!
Honestly, I was thinking lymphoma. This thread should be used as a benchmark for HA sufferers who fear cancer/lymphoma.
God I'm so happy for you!
I've read through this thread- but I'm so glad you got good news xx
Well, great news and I'm not surprised as I didn't think you had lymphoma for 1 minute! Although there were raised nodes, there were no other typical symptoms.
However, I do know people who sometimes have raised lymph nodes who have various autoimmune conditions ... the nodes appear then retract according to how their system is coping at the time.
Did you mention about the steroid treatment you had (related to your fertility issue), did he think there could be a connection?
I'm glad you will have a happy weekend :)
You're right about the submandibular glands, when they come up they can feel like marbles ... the one I had last year felt just like one and was not as big as I thought! It started to go down after about 6 weeks.
I felt the same. What was described and the presentation as well as the doctor's opinions affirmed it for me. I do think "something" is/was going on but not lymphoma or cancer based on my personal experience.
As KK said... TYS issued. Kudos on not getting totally sucked into the rabbit hole :)
Positive thoughts
WiseMonkey
07-03-20, 01:20
Yes, I mentioned the nodes came up around the time I started taking the immunosuppressant treatment, and he wasn't sure of a connection.
What it COULD be is that my immune system was so suppressed that it allowed me to catch some weird symptomless viral infection that made my nodes swell.
I've had the main submandibular lump for about five weeks now so hopefully it'll bugger off soon, as it's a bit uncomfortable. It also looks ugly!
I reckon it's an after effect of the steroids, my body hates them. I had some oral prednisone (first time ever) for a weird rash (likely MCAS) and caught a cold from school 3 days into the course and I never get colds!
It's great you were able to wait while they did the biopsy testing especially on the NHS! We have the Skin Institute down here in NZ, where you can get lesions biopsied then wait a few hours to get the results. They provide a lovely lunch (if you're not too worried to be hungry) but it's private so you pay or have medical insurance.
It's hard not to get wound-up when there's actual visible, physical symptoms or weird stuff going on in blood tests ... it's a work in progress :)
Thanks all! Jase, ikr, seemed so dodge to me. And then the day before the scan when I realised there were even more lumps. And then during the scan he found SO MANY lumps and he was like "this one in particular looks suspicious" but by that point I already 'knew' what it was anyway so I was just sort of like yep.
But then very interesting that despite all that Fish thought all along that it wasn't anything bad.
Anyway whatever it is hopefully the blood tests will get to the bottom of it. I don't feel ill or anything so 🤷🏻*♀️
Hi guys, just an update.
Been a bit over 6 weeks now since I noticed the swollen nodes.
The consultant sent the following letter to my GP which for some reason made me feel alarmed:
"I reviewed this 31 year old lady who presented with a six week history of right sided cervical lymphadenopathy. She underwent an ultrasound and FNA this morning. The ultrasound demonstrated essentially reactive changes but there was one level III node that had a slightly odd appearance. The fine needle aspirate from this, however, again shows reactive changes.
I have therefore reassured Miss Hall of these results but, given the slight odd appearance of the level III node, I have arranged for her to come back for follow up in two months' time."
So, I don't like how he said 'essentially' reactive changes. It's like he's saying they're essentially reactive, but...
Also, he keeps saying about the odd appearance of the node. If he was sure it wasn't cancer, why would he be worried about this and be arranging a follow up?
I have been totally fine since the biopsy, when he said it was all fine, and almost forgotten about the nodes, but this letter made me anxious. I've checked the nodes today and they seem no bigger, no smaller. The "odd" node may feel SLIGHTLY softer, but that may be my imagination or because they sucked a bunch of stuff out of it!
Two other points:
When the radiologist (not the ENT consultant) was scanning me, he seemed very cheerful. He said the nodes looked reactive apart from the one strange one (the first one that came up). I asked if it was cancer, and he chuckled and said he didn't think so. In order for him for chuckle, it seems like he must have been quite sure for some reason it wasn't cancer? Why??
Of course they still did the immediate biopsy and analysis, given the odd appearance, and half an hour later the consultant said he was 99% sure there was no cancer.
I felt very reassured, but since this letter I've been wondering how accurate the biopsy was (I've read less than 90%) and whether mast cells could disguise a malignancy?? But I'm not sure because I've tried to limit my googling.
This letter just made me feel strange all afternoon.
Can anyone interpret it and tell me what they think it means?
I haven't had the serology results yet, which I think were for viral conditions only.
WiseMonkey
17-03-20, 04:30
Hi I wouldn't read too much into this or over analyse the language or the radiologists mood, as he's likely this way with all patients!
I think it's great that the specialist is seeing you in 2 months time, he's following up because of the 'odd' nature of the node and he just wants to re-check it.
As the letter states, they only FNA the 'odd' node because of it's shape. On an ultrasound they can see any irregularities in the shape of the node wall (the outside lining). Obviously your 'odd' node was one of these but it doesn't mean it was cancerous. When I had my raised submandibular node, the specialist commented that sometimes they remove a persistent node mainly because it's a nuisance (uncomfortable). This may happen with your 'odd' node ... you could ask about this.
I don't understand your question re 'whether mast cells could disguise a malignancy??' I think only the specialist could. It's good that the nodes are no bigger than before so you will be fine to wait the 2 months to get to see the specialist. You obviously have no other symptoms either.
Don't be surprised if the serology shows nothing (no virus), it likely won't if it's something autoimmune related.
Hi I wouldn't read too much into this or over analyse the language or the radiologists mood, as he's likely this way with all patients!
I think it's great that the specialist is seeing you in 2 months time, he's following up because of the 'odd' nature of the node and he just wants to re-check it.
As the letter states, they only FNA the 'odd' node because of it's shape. On an ultrasound they can see any irregularities in the shape of the node wall (the outside lining). Obviously your 'odd' node was one of these but it doesn't mean it was cancerous. When I had my raised submandibular node, the specialist commented that sometimes they remove a persistent node mainly because it's a nuisance (uncomfortable). This may happen with your 'odd' node ... you could ask about this.
I don't understand your question re 'whether mast cells could disguise a malignancy??' I think only the specialist could. It's good that the nodes are no bigger than before so you will be fine to wait the 2 months to get to see the specialist. You obviously have no other symptoms either.
Don't be surprised if the serology shows nothing (no virus), it likely won't if it's something autoimmune related.
The nodes did seem to come up around the time I started taking the steroids. Which is an issue, because I'll need to take steroids in the future if I'm to maintain a pregnancy.
Cross that bridge when I come to it.
So, do you get from that letter that the doctor isn't worried it's cancer? Despite the odd appearance? I just found the letter alarming.
I'd sooner have the submandibular node removed, that one seems way bigger and more annoying!
So, do you get from that letter that the doctor isn't worried it's cancer? Despite the odd appearance? I just found the letter alarming.
I think it's usual medical jargon/parlance and given their rather casual attitude I wouldn't be inclined to worry about this.
The Consultant said that he was 99% sure this wasn't cancer.. That's as definitive as possible barring a histology report. He has seen the FNA report and has drawn his own conclusions. You must avoid interpreting his comments as something to be concerned about?
Yeah, you're probably right... I guess I would feel most comfortable with them taking the node out and doing histology. I know that's more accurate than cytology.
The consultant I saw was the clinical ENT lead at the hospital so he must be pretty good though!
Anyway, I have no other symptoms at the moment and I'm pretty certain the nodes are currently no bigger and I haven't found any new ones yet. Not that I'll be feeling around for them.
I think it’s just because it brings back the fear, it’s in writing and it’s jargon and it’s from an official. I had exactly the same feelings when I got a letter like that.
I think it’s just because it brings back the fear, it’s in writing and it’s jargon and it’s from an official. I had exactly the same feelings when I got a letter like that.
Yeah, I guess. I guess I'm trying to work out what he's actually thinking. Like, in his head, is cancer ruled out and now he just wants to work out what IS causing the swollen nodes, like a virus or autoimmune thing or whatever? Or in his head is cancer still a possibility and something he will still be checking for?
He has ruled out cancer so he won't be thinking anything other than arranging a routine follow up appointment.
He has ruled out cancer so he won't be thinking anything other than arranging a routine follow up appointment.
Ok, good, I'm glad that's how you interpreted it. I wasn't sure how to interpret it. I think it was difficult to me to unravel his thinking because of HA. Thanks.
WiseMonkey
17-03-20, 18:47
So, do you get from that letter that the doctor isn't worried it's cancer? Despite the odd appearance? I'd sooner have the submandibular node removed, that one seems way bigger and more annoying!
If he was removing a node, it would be the 'odd' one, not necessarily the submandibular one (unless they're one of the same)! Your specialist is obviously keeping an eye on it which is the correct course of action to take :)
Ok, good, I'm glad that's how you interpreted it. I wasn't sure how to interpret it. I think it was difficult to me to unravel his thinking because of HA. Thanks.
I think your HA is playing its part in how you have interpreted this letter and it's really good that you can see this now.
ThirstyMMM
17-03-20, 23:43
I interpret it as being that according to their tests they are satisfied that you are healthy and have nothing to be concerned about, whilst the check-up is to just double-check everything is all good after a small period of time and moreso keep an eye on things. :)
Take care! :hugs:
I interpret it as being that according to their tests they are satisfied that you are healthy and have nothing to be concerned about, whilst the check-up is to just double-check everything is all good after a small period of time and moreso keep an eye on things. :)
Take care! :hugs:
Thank you 🙂 you're probably right.
I think with just all of the stuff that's going on I'm getting more anxious than I should.
If it was just Coronavirus I think I personally would be dealing ok. I'm not worried about me catching it, but I'm worried about my mum and dad... they're 70 and 75 with apnoea and asthma respectively. I just want to focus on them and make sure they have what they need. They are my only family.
But with these lumps as well, I'm jumping from worrying about my parents, to worrying that maybe I do have cancer, to worrying about what it might be even if it isn't cancer... if this is a bad reaction to my IVF medication how will I ever have a family of my own?
Then I start looking into a very bleak future where my parents are dead, and I have no family at all.
Hi guys,
Just an update. Lymph nodes are still enlarged, though they don't seem any bigger. It's been about 9 weeks since I first noticed them, now. The submandibular one is still like an enormous marble, I hate it.
The only node that seems any different at all is the "odd" one on the side of my neck. It SEEMS flatter, in that it does not seem to be visibly protruding so much. Whichever angle I look at it from, the lump seems less prounounced. However, that could just be the flesh smoothing out over it. Also, it is still the same length. Can anyone think why that could be? What would cause a node to remain the same height and width, but become more flat?
Still no other symptoms at all.
My follow up appointment is 5th May, depending on the rona situation I guess. Does anybody know what the doctor will do? Will he want to remove the nodes since they haven't got smaller? Does it mean it could be cancer after all?
Surely something must be wrong for them to be persistently enlarged. There must be a reason. Even if it's not cancer I'm worried it could affect my fertility treatment. Any advice or thoughts would be welcomed.
Hope everyone's doing ok and staying safe.
WiseMonkey
07-04-20, 22:05
Surely something must be wrong for them to be persistently enlarged. There must be a reason. Even if it's not cancer I'm worried it could affect my fertility treatment. Any advice or thoughts would be welcomed.
Hope everyone's doing ok and staying safe.
These are questions you need to ask your specialists as they are the experts. We can only give you our limited knowledge, guesses and opinions.
Stay safe x
These are questions you need to ask your specialists as they are the experts. We can only give you our limited knowledge, guesses and opinions.
Stay safe x
I like people's limited knowledge, guesses and opinions!
I like people's limited knowledge, guesses and opinions!
But these will only give you more HA "ammunition" and a potential to mull over and "process" every opinion offered from people who aren't experts in this field.
I made a comment on a Facebook post today saying that I wasn't sure whether I should go to my ENT follow up appointment on 1st May or whether I should delay it until corona had died down.
A lady replied right away and said please go. She said she had similar lumps to mine, had a biopsy which said all clear, and the doctor said he was 100% sure it wasn't cancer. She had no other symptoms but was still worried so she was offered surgery - and after surgery the histology showed cancer. She had 24 rounds of radiotherapy and is ok now.
This alarmed me. The biopsies can't be very accurate.
I can see why it would alarm you. There’s always going to be those people who have scary alarming stories, it’s up to you what you decide to do. After all, she doesn’t fully know your story and you don’t fully know hers.
Yeah, I guess there will always be horror stories. I think I'll go to my appointment on the 1st anyway.
The thing I have noticed about the lump on the side of my neck is that it is DEFINITELY flatter in appearance. Whereas initially there was a very obvious lump poking out, there is now no obvious lump at all. However, I can still feel the lump if I touch it and it is the same height and width. It's just flatter. I can't get my head around what that means.
I made a comment on a Facebook post today saying that I wasn't sure whether I should go to my ENT follow up appointment on 1st May or whether I should delay it until corona had died down.
A lady replied right away and said please go. She said she had similar lumps to mine, had a biopsy which said all clear, and the doctor said he was 100% sure it wasn't cancer. She had no other symptoms but was still worried so she was offered surgery - and after surgery the histology showed cancer. She had 24 rounds of radiotherapy and is ok now.
This alarmed me. The biopsies can't be very accurate.
Probably best not to ask advice from facebook. How do you know how genuine this person is? I'm sure the hospital will advise you as to whether you should attend or not. They know your case. You are very vulnerable on social media and any reply has the potential to trigger your HA. Trust your consultant not facebook or google.
WiseMonkey
21-04-20, 00:01
I'd keep your appointment as there's no saying how long lockdown etc will last in UK. I know you'll be vigilant about self care etc during this time :)
I've started feeling a lot like it's cancer again.
I know that lymphoma is the most commonly misdiagnosed cancer, and that biopsies can often be interpreted incorrectly especially for some types of lymphoma like mantle cell. Also, the lymph nodes may stay the same size or even get smaller in some types of low grade lymphoma, as the cancer waxes and wanes in activity.
I keep thinking of how strange that one lymph node looked - round and black - and how my white blood cell count dropped. I don't understand what else could be going on here.
I have a bad feeling about Gloucester Hospital where I went for my first appointment. I felt like I was going to die then and there. When I went to Cheltenham Hospital for my biopsy, I felt pretty much fine. My follow up is at Cheltenham again and I think that because the nodes are still there he'll want to remove them - particularly the weird looking one. And he'll send me to Gloucester for that. Then I'll walk up the stairs at Gloucester for my results appointment, and sign in, and sit in that waiting room where I had that awful feeling. And that might be when they tell me.
There are so many things that point towards some type of lymphoma, and the only thing that points away from it is that clear biopsy - which isn't very accurate for some types of lymphoma.
Did your Consultant tell you that the biopsy wasn't very accurate for some types of lymphoma?
Did your Consultant tell you that the biopsy wasn't very accurate for some types of lymphoma?
No, but I know that some types of lymphoma like mantle cell are hard to differentiate from reactive changes under the microscope.
I've read a few studies where people were misdiagnosed.
utrocket09
26-04-20, 16:03
No, but I know that some types of lymphoma like mantle cell are hard to differentiate from reactive changes under the microscope.
I've read a few studies where people were misdiagnosed.
Unless an actual doctor told you that, you need to quit reading these so called studies.
No, but I know that some types of lymphoma like mantle cell are hard to differentiate from reactive changes under the microscope.
I've read a few studies where people were misdiagnosed.
"Studies" are meaningless. What matters is your own diagnosis and your Consultant's professional opinion of what is going on in your case..or what isn't.
But I think you prefer to do your own "research" which will obviously negate all that your Consultant has told you. It's your choice of course and will keep your HA active but maybe you want this deep down?
Who'd want HA?! Although I guess I do want to be prepared. I know how devastating it is to be hit with bad news out of the blue. It's better to be ready.
Of course, ideally, I don't want it to be cancer. But also I kind of want to be ok with it being cancer. One day, whether now or later, I will get ill and die. I don't want to be scared of that.
If my consultant had no concerns I'm not sure why he arranged a follow up appointment?
Probably just a routine follow up to check ? I'm sure he would have explained this to you at your last appointment?
NotDeadYet
26-04-20, 20:06
I have a bad feeling about Gloucester Hospital where I went for my first appointment. I felt like I was going to die then and there. When I went to Cheltenham Hospital for my biopsy, I felt pretty much fine. My follow up is at Cheltenham again and I think that because the nodes are still there he'll want to remove them - particularly the weird looking one. And he'll send me to Gloucester for that. Then I'll walk up the stairs at Gloucester for my results appointment, and sign in, and sit in that waiting room where I had that awful feeling. And that might be when they tell me.
I know how devastating it is to be hit with bad news out of the blue. It's better to be ready.
Of course, ideally, I don't want it to be cancer. But also I kind of want to be ok with it being cancer.
I want to address both of these statements. I lived through my lymph node anxiety with thoughts incredibly similar to these two and they are very faulty and damaging to your mental health. At one point, I sat in a parking lot eating fast food and could see my GP's office. I had this feeling that it would be in that very building where I would find out that I had lymphoma. I was so confident that this was a "premonition" or a way to prepare myself for the worst that I held on to that thought and its inevitability. Guess what? That thought came three years ago this July and it never came to pass. I wasted so much time dwelling on this thought for no good reason.
Additionally, clinical research psychologist Brene Brown has done research on the thinking related to the second statement I've quoted. She has found that people who dwell upon scary or foreboding thoughts in order to prepare themselves for something scare or foreboding were no better prepared for when the actual thing happened. Many people reported regret for wasting time on such thoughts. The best remedy for these is to separate these thoughts from reality. The actual reality is that your consultant literally told you he had no concerns. Anything else you think or feel are simply thoughts and feelings, not reality.
Lymphoma worries such as your own are scary and so difficult for someone with HA. Keep your appointment because that is essential to working through HA regardless of the medical outcome.
Best Wishes.
Probably just a routine follow up to check ? I'm sure he would have explained this to you at your last appointment?
Not gonna lie I was off my tits on diazepam at that appointment.
However, what he said in the letter was that he's arranged a follow up "given the slightly odd appearance of the node". So he seems to not like it, even though the biopsy was clear and he literally did say to me "more than 99% sure" it's not cancer.
Unless that was a diazepam dream.
I want to address both of these statements. I lived through my lymph node anxiety with thoughts incredibly similar to these two and they are very faulty and damaging to your mental health. At one point, I sat in a parking lot eating fast food and could see my GP's office. I had this feeling that it would be in that very building where I would find out that I had lymphoma. I was so confident that this was a "premonition" or a way to prepare myself for the worst that I held on to that thought and its inevitability. Guess what? That thought came three years ago this July and it never came to pass. I wasted so much time dwelling on this thought for no good reason.
Additionally, clinical research psychologist Brene Brown has done research on the thinking related to the second statement I've quoted. She has found that people who dwell upon scary or foreboding thoughts in order to prepare themselves for something scare or foreboding were no better prepared for when the actual thing happened. Many people reported regret for wasting time on such thoughts. The best remedy for these is to separate these thoughts from reality. The actual reality is that your consultant literally told you he had no concerns. Anything else you think or feel are simply thoughts and feelings, not reality.
Lymphoma worries such as your own are scary and so difficult for someone with HA. Keep your appointment because that is essential to working through HA regardless of the medical outcome.
Best Wishes.
Thank you for that. That was really interesting to read, and did actually make me feel a bit better. Some of the feelings I get are almost possible to describe, and I feel like I'm the only person who gets them. Nobody seems to describe such feelings with the same intensity and certainty that I feel them. But perhaps other people do get them, too, when their brains are a bit mental like mine. Hopefully it's that.
utrocket09
26-04-20, 21:17
Not gonna lie I was off my tits on diazepam at that appointment.
However, what he said in the letter was that he's arranged a follow up "given the slightly odd appearance of the node". So he seems to not like it, even though the biopsy was clear and he literally did say to me "more than 99% sure" it's not cancer.
Unless that was a diazepam dream.
But if you already had a clear biopsy... what more are you looking for ?
But if you already had a clear biopsy... what more are you looking for ?
Idk... I guess I don't understand why if he were convinced that the biopsy is accurate he would arrange a follow up. Like... why?
utrocket09
26-04-20, 21:38
Idk... I guess I don't understand why if he were convinced that the biopsy is accurate he would arrange a follow up. Like... why?
Because follow ups are not always bad. They are to check in and see how you are.
Because follow ups are not always bad. They are to check in and see how you are.
Coronavirus, though! If it wasn't important he'd have cancelled it. Plus he kept banging on about the "odd appearance". He legit said it about 5 times.
utrocket09
26-04-20, 21:49
Coronavirus, though! If it wasn't important he'd have cancelled it. Plus he kept banging on about the "odd appearance". He legit said it about 5 times.
Again...you are jumping to a conclusion that doesn't exist. You had a clean biopsy. That means no cancer. You can do follows ups via video chat or plain telephone.
Again...you are jumping to a conclusion that doesn't exist. You had a clean biopsy. That means no cancer. You can do follows ups via video chat or plain telephone.
They're telling me to go to the hospital for my follow up, though. It's on Friday. I don't know if he'll examine me or do more scans, or if he'll be concerned that the nodes haven't gone away. I don't know if he'll want to remove them now.
utrocket09
26-04-20, 23:07
They're telling me to go to the hospital for my follow up, though. It's on Friday. I don't know if he'll examine me or do more scans, or if he'll be concerned that the nodes haven't gone away. I don't know if he'll want to remove them now.
You had a clean biopsy... what more do you want? Sounds like you want someone to tell you are ill so you can say I told you so.
You had a clean biopsy... what more do you want? Sounds like you want someone to tell you are ill so you can say I told you so.
I don't know. I guess I just want to know. I want to be prepared. I want to know what my doctor is thinking.
I read a study (a proper one, on NCBI) and fine needle aspiration only seems to be about 85% accurate! In the study, of 20 people diagnosed with reactive changes 3 actually had cancer!
I guess I'm thinking... perhaps he expected my nodes to have gone down by the follow up? And when he finds out they haven't he's going to be quite shocked and revise his opinion? I guess that's what I'm worried about.
utrocket09
26-04-20, 23:58
I don't know. I guess I just want to know. I want to be prepared. I want to know what my doctor is thinking.
I read a study (a proper one, on NCBI) and fine needle aspiration only seems to be about 85% accurate! In the study, of 20 people diagnosed with reactive changes 3 actually had cancer!
I guess I'm thinking... perhaps he expected my nodes to have gone down by the follow up? And when he finds out they haven't he's going to be quite shocked and revise his opinion? I guess that's what I'm worried about.
Again you are reading into studies that have nothing to do with your individual case. You already had a clean test. You are spinning your wheels and getting nowhere.
WiseMonkey
27-04-20, 02:07
Like I said, I'd keep the appointment but I'd ask myself have the nodes got bigger, have I got any other symptoms, is my appetite and weight still the same? The answers should be reassuring going into your appointment on Friday :)
Like I said, I'd keep the appointment but I'd ask myself have the nodes got bigger, have I got any other symptoms, is my appetite and weight still the same? The answers should be reassuring going into your appointment on Friday :)
They haven't got bigger (that I've noticed, anyway) and I don't have any other symptoms, so that is good.
I do think it's strange that they're there at all, and have been for about three months now, with no apparent cause. And that one of them actually looks like a cancerous node.
I keep thinking about low grade lymphomas, where nodes may not change in size for ages, and there may be no symptoms. I don't know. I can't seem to get it out of my head.
5024
Here is an excerpt from the letter the consultant sent.
Note the diagnosis is "Reactive changes ON ULTRASOUND AND FNA" - so he's only saying according to those two tests the changes appear reactive. But those tests are not as reliable as actually extracting and analysing the node.
He states that he is seeing me again due to the odd appearance of the node. That can only mean that the node looks suspicious enough that he needs to keep his eye on it, despite the FNA results? If the node looked totally normal, he wouldn't be seeing me again. There is clearly doubt in his mind and so he is not comfortable discharging me.
I'm thinking, perhaps he is hoping to see a decrease in size at the follow up. When he finds there has been no decrease in size he's going to become concerned and maybe the diagnosis will change.
I just WISH I knew what he was thinking and expecting. I hate having to try to interpret what he's saying.
WiseMonkey
27-04-20, 10:54
Then you need to ask him and tell him what you think and your fears about things. Ask about having the suspicious node removed, ask about the others too.
Then you need to ask him and tell him what you think and your fears about things. Ask about having the suspicious node removed, ask about the others too.
Yeah, I think I'll ask if it can be removed.
I reckon he might want to remove it anyway at this point. These nodes clearly aren't going to go away by themselves.
I guess what I'm thinking is that maybe the suspicious node is a low grade lymphoma or something and the other nodes really are reactive - but what they're reacting to is cancer in my neck!
That is something that keeps going through my head as a possibility.
Just the fact that my white blood cell count was lower than usual keeps playing on my mind too. I don't think the doctors have taken that into account at all.
I wish I knew what was going to happen on Friday.
I was just reading about FNA on the hospital website and it says:
"Adequate samples are taken to the Histology department by a member of staff from the clinic, to be assessed by a pathologist. A preliminary diagnosis is then given to the clinician over the phone if possible. This should enable the patient management to be planned the same day with the patient and clinician."
So it's only a preliminary diagnosis! They don't even think FNA results are a proper diagnosis!
The node was round and black with no hilum. I don't understand how a node that looks like that can be benign.
Even when I don't consider the anxiety feelings, which I know may mean nothing, when I just look at the evidence - enlarged lymph nodes for three months with no signs of infection, round and black lymph node with no hilum, lowered white blood cell count - it just seems really suspicious to me. I almost feel like the consultant decided just to leave it for a bit because of everything kicking off with corona, even though normally he might order additional investigations.
The only good thing is that the suspicious node DOES seem flatter. If I were to take a photo of the side of my neck now, I doubt you'd see a lump - whereas if you remember from my original photo in this thread the lump was very evident.
I don't know if the node is actually flatter, though, or if that's just a skin thing. It still seems the same height and width and I don't understand why those dimensions would stay the same if it was getting flatter.
I'm just so confused and anxious. I can't work out what is rational and what isn't. I think, looking at the evidence as it is, it's not irrational to be worried about it. And I keep remembering all the times I was worried about things and my doctors wouldn't believe me but I was RIGHT - like when I thought I'd lose my second pregnancy, and when I thought there was more tissue left inside but they insisted there wasn't and the ultrasound had actually missed it, and when my mum had laryngospasm and they kept saying it was anxiety even though I KNEW it wasn't but they wouldn't listen until she eventually got diagnosed months later. I keep remembering all these occasions of doctors dismissing me when I knew something was wrong, and then I ended up being right and they weren't.
Idk what to think now.
So..it's probably best to wait for Friday and cut out the "researching" and ruminating because you are going round in circles and will always come back to the thought that a terrible mistake has been made etc etc
So..it's probably best to wait for Friday and cut out the "researching" and ruminating because you are going round in circles and will always come back to the thought that a terrible mistake has been made etc etc
I'm not even sure it was a mistake, because the diagnosis was only preliminary based on the FNA. That's why he's seeing me again, to check my progress and maybe make a new diagnosis.
It seems like a low grade lymphoma just fits with everything. The lack of symptoms apart from all these nodes... why would I have significantly swollen lymph nodes for three months for no reason?! And one of them looks suspicious. I can't imagine what could cause a node to look that way if not cancer. Follicular lymphoma is hard to differentiate from normal reactive follicular hyperplasia I believe. Why would my nodes be reacting, anyway?! What have they been reacting to for the last three months?!
I don't understand any of this and I'm just getting very worried. I was fine for ages, and assumed the biopsy was correct, but it doesn't make sense any more.
I'm not even sure it was a mistake, because the diagnosis was only preliminary based on the FNA. That's why he's seeing me again, to check my progress and maybe make a new diagnosis.
It seems like a low grade lymphoma just fits with everything. The lack of symptoms apart from all these nodes... why would I have significantly swollen lymph nodes for three months for no reason?! And one of them looks suspicious. I can't imagine what could cause a node to look that way if not cancer. Follicular lymphoma is hard to differentiate from normal reactive follicular hyperplasia I believe. Why would my nodes be reacting, anyway?! What have they been reacting to for the last three months?!
I don't understand any of this and I'm just getting very worried. I was fine for ages, and assumed the biopsy was correct, but it doesn't make sense any more.
So please save your questions for the Consultant because you are not qualified to make your own diagnosis based on internet studies and Facebook responses. You really aren't. If the Consultant agrees with your theories then you have every right to say "Told Ya So" but until then ..please try not to speculate further?
So please save your questions for the Consultant because you are not qualified to make your own diagnosis based on internet studies and Facebook responses. You really aren't. If the Consultant agrees with your theories then you have every right to say "Told Ya So" but until then ..please try not to speculate further?
Yeah I guess I'll just have to sit tight until Friday.
I don't know why I keep wanting to write everything I'm thinking down. I don't know how I think it'll help.
I don't think it can be Hodgkin's lymphoma or high grade Non-Hodgkin's lymphoma because I'd expect more growth of the nodes, and more symptoms. Low grade NH lymphoma does seem to match though.
I'm not the typical age group for NH lymphoma. And the suspicious node on the side of my neck does appear flatter - no longer a noticeable bump. But it is still very palpable. And who knows what it looks like on ultrasound now. The submandibular lump still seems massive. There is also the smaller one next to it, and one higher up an inch or so down from my ear.
I think he saw one or two others on ultrasound as well.
I am going to try to watch Game Face and not think about it.
I'm doing ok today in that I am functioning normally and getting on with my work. I haven't really been able to eat, though.
I think it could be follicular lymphoma, which is a type of low grade Non-Hodgkin lymphoma.
It's not always easily diagnosed from fine needle aspiration. In fact, FNA should not be used as a diagnostic tool. The node should be excised for analysis, because FNA is so unreliable.
I just don't buy that a node can be round, black, with no hilum and just be reactive. Especially after three months.
I feel that maybe the consultant just wanted to wait a bit longer what with everything that was going down with rona and so told me to come back in 6 weeks in the hope that the nodes may have gone away by then and he wouldn't need to undertake additional diagnostic tests.
He'll also know that if it is follicular lymphoma it won't really make a difference to the prognosis or treatment if I leave it a few months.
I feel quite sick.
Jenny, I know it's tough, but find another way to occupy yourself?
Get Friday out of the way, and then I'd be happy to offer you a free jewellery-making class or two if you were interested.
Jenny, I know it's tough, but find another way to occupy yourself?
Get Friday out of the way, and then I'd be happy to offer you a free jewellery-making class or two if you were interested.
Really? That's so nice, thank you! I don't have any stuff to make jewellery from, though?
I think either way something like that would be good.
If I have follicular lymphoma as I suspect then I need to find a way to make the most of my life rather than imploding.
I just want to be able to deal with whatever comes. Whether it's now or later I don't seem equipped to deal with a serious illness.
I honestly think you're going to be okay, but I can see why you wouldn't think that. Just try and stay away from your usual researching places if you can? They won't help you in the long run.
I honestly think you're going to be okay, but I can see why you wouldn't think that. Just try and stay away from your usual researching places if you can? They won't help you in the long run.
I know I can't really solve anything by reading studies and papers but I can't seem to stop.
I just want to find out about lymph node appearance... morphology, I suppose. The thing that troubles me the most is how that one node looked. Round, black, no hilum. I know what that means. The consultant even admitted it looked odd. Nobody actually used the word 'suspicious', but I suspect 'odd' is a euphemism.
I just feel like I want to find out whether a node that looks that way really can be something benign. In everything else I've read on this forum where people have had lymph node scares their nodes have always just looked reactive on ultrasound.
It's very important to know where to stop with your "research".
It's very important to know where to stop with your "research".
I know. I've stopped now because I couldn't find anything very positive. Everything I read and all the pictures I saw identified nodes that looked like mine to be malignant basically. And yet my consultant had some reason for thinking it wasn't malignant. I guess he trusts the results of the cytology - but I'm actually wondering whether he even saw the ultrasound image of the node.
I think he was hoping the nodes would just go away. As they haven't, I guess he'll keep investigating now. I know I just have to wait.
You do have to wait.
You are not an ENT consultant and cannot acquire knowledge and expertise from the internet. However you do appear hellbent on remaining one step ahead of the Consultant..
I saw a new consultant today, who described himself as the 'paranoid' type which was great for me - means he's much more thorough!
And the serology results came back which surprised both me and him because they showed a cause!
At the time of testing, I had active toxoplasmosis!!
I have no idea how, as I haven't been near a cat for probably years. I did get pricked by a rose, or maybe I could have eaten some dodgy meat... does anytime know anything about that?!
I was also positive for EBV antibodies, but that's a fairly common finding and it wasn't active infection. I probably had it years ago.
Toxoplasmosis and EBV are bad for pregnancy, of course, so I'll need testing to make sure they're latent before I try to achieve my next pregnancy. I am a little concerned that once I'm on the immune suppressants again the infections might flare up and cause a fourth miscarriage.
I'll be speaking to my GP and fertility consultant about this.
I did question the accuracy of the cytology and the consultant admitted that it couldn't really rule cancer out - but that there were no signs of anything dodgy at all in the cytology and that given the toxo diagnosis it was overwhelming likely to be that.
He did feel the nodes again and did say they felt very reassuring (though I know that's not the most reliable diagnostic tool).
He said that the dodgy looking node could be caused by the toxo too. Sometimes infections can just do weird things to nodes.
He had said that even in follicular lymphoma he would be expecting the nodes to be a bit bigger by now. He did say the nodes might never go down now.
So, given all the evidence, he thinks we have a diagnosis. He said that often as a paranoid doctor he would lie awake at night wondering if he's done the right thing, but in my case he will sleep soundly.
He was lovely!
So, I'm going to hopefully be able to accept my diagnosis and just make sure this toxo infection (and maybe EBV) are totally under control when I'm back on steroids and trying to get pregnant.
Aaaaand breathe.
Thanks for everyone's support. You've all always had time for me and responded to my endless posts. So thank you.
What a lovely doctor!
I’m so pleased for you
What a lovely doctor!
I’m so pleased for you
Yes, he was! Love a paranoid overly cautious doc.
He said that if I pushed for it they would probably remove the node, but given the strong evidence now that this all was in fact caused by toxo he would recommend against it. Also, he said that given the area it's in it could cause facial paralysis and loss of taste if it was removed 😬
So yeah I'm going to really focus on this being toxo and nothing more.
I just spoke to my fertility clinic and they said I need to contact my GP for treatment for the toxo. Once the active infection is gone then I'm immune and it will cause no future risk to pregnancy. So I'll be doing that next.
The EBV they said COULD resurface but it's normally fine. It's not ideal for me, obviously, since I already have an immune system that attacks foetuses, low ovarian reserve, odd hormone levels generally... but it is what it is.
I've just got to keep trying.
So glad things are okay! *hug*
So glad things are okay! *hug*
Thank you! ☺️
WiseMonkey
01-05-20, 22:47
Glad all went well for you. I knew it wasn't cancer, wrong profile ... take care :)
Thanks all.
I'll be speaking to my GP about the toxo on Monday hopefully.
The nice consultant said I should get another test done to see if the infection is still active, and if it is I'll need some treatment. Most people with toxo don't get symptoms but I suppose because I was immune suppressed due to the steroids it was a bit worse for me.
Normally once toxo has become dormant it's no longer a problem, but I'm just a bit worried that it could re-emerge in my case because I'll need to go back on the steroids for my next pregnancy.
Toxo during pregnancy is obviously very bad and can cause severe problems for the baby.
I suppose I'll get a test during my next pregnancy and if it's positive I'll take medications to hopefully prevent it spreading to the baby.
Then the baby will be tested once it's born and if it's positive it'll be on meds for a year to prevent eye and brain problems.
That's the worst case scenario, anyway... hopefully.
I'm very glad it's not lymphoma, but also concerned that I have one more obstacle on my journey to motherhood now. It's not like I don't have enough fertility problems already!
I'll update with what my GP says next week.
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