View Full Version : Cancer/lymphoma - I'm a wreck.
Sat here typing now and I can barely see through the tears.
I've had two swollen lymph nodes symmetrical on my right side and on my left side of my jaw for years now. Just under the jaw to the middle so I believe they are the submandibular lymph nodes. I mentioned them to my GP many years ago who just brushed it off and said it was probably down to the fact I had acne keloidalis nuchae (a type of folliculitis) on the back of my neck. He told me to forget all about them, so I did. Last week I was at my dentist and the dentist told me those nodes were still swollen and there was no sign of infection in my mouth whatsoever. I'd say they're nearing grape size. I've also found a lymph node under my chin. All the nodes don't seem to be hard and they are moveable. I believe I've had them for many years now.
I had a blood test last year and my inflammation markers were slightly raised but my GP said they can be raised for such basic reasons. I'm now thinking it's probably down to the fact I've got lymphoma when I link it with the swollen lymph nodes I've got. I've read many stories about how it's not picked up in blood tests.
I've made an appointment to see my GP this Thursday but honestly I'm not coping whatsoever. My friend just left - she truly witnessed the ugly side of my health anxiety. I was on the floor struggling to breathe, in floods of tears. I'm utterly convinved I've got cancer and it's spread (I've had mid and lower back pain on and off over the past year now) and that I won't see another Christmas. I feel utterly numb and heartbroken.
I truly wouldn't wish this feeling on my worst enemy.
Not sure why I'm posting really. Just getting my feelings out and hoping for a bit of encouragement.
I know it's scary. But do keep in mind that it's not uncommon for lymph nodes to raise - in fact, they raise and stay raised for benign reasons far more often than they do for concerning ones. Sometimes they stay up for a long time even when the infection has passed (I think they call that a scarred node?).
I had one under my jaw for at least six years and I spent that time panicking that I was at death's door but too afraid to do anything about it. Finally I was at university and decided enough was enough and had the doctor look and he wasn't concerned at all. Sometime in the next few years I went to feel it and it was gone. I was sure it would be raised for life at that point, but nope, gone.
Best of luck for your appointment Thursday. I know nothing will make the anxiety go away, but see if you can write down all of your questions/concerns so that you don't forget anything in the heat of the appointment. I'm sure it will be nothing.
I know it's scary. But do keep in mind that it's not uncommon for lymph nodes to raise - in fact, they raise and stay raised for benign reasons far more often than they do for concerning ones. Sometimes they stay up for a long time even when the infection has passed (I think they call that a scarred node?).
I had one under my jaw for at least six years and I spent that time panicking that I was at death's door but too afraid to do anything about it. Finally I was at university and decided enough was enough and had the doctor look and he wasn't concerned at all. Sometime in the next few years I went to feel it and it was gone. I was sure it would be raised for life at that point, but nope, gone.
Best of luck for your appointment Thursday. I know nothing will make the anxiety go away, but see if you can write down all of your questions/concerns so that you don't forget anything in the heat of the appointment. I'm sure it will be nothing.
Thanks for the kind words, Poppy.
I've read nodes can stay raised for a long time but my health anxiety riddled brain just can't wrap my head around the fact I have these swollen nodes without any kind of infection. I can't actually remember the last time I was ill.
I'm trying to calm down, listen to relaxing music, etc, but nothing seems to be working right now. I'm so utterly convinced I've got the C word - it's something I've feared for so many years of my life. I'm only 36. There's still so much I want to see and do.
Honestly I think it depends on the doctor who checks you out and if they have never seen them before. I have similar in my neck and my pcp never cares about them, thinks they are fine. But once in a while if I see somebody who isn't familiar with me they ask about it. My anxiety got raised a bit before because I saw a new dental hygienist who made a comment about them but the dentist had no concerns. Sometimes they just stay bigger.
I’ve been through this lymph node anxiety before (as many other health anxiety sufferers have done too). I’ve had a grape size one under my left ear for at least 5 years that’s hard and doesn’t move. During covid it worried me so much I went to the doctors and was referred (more because of another issue in my neck) and I spiralled so bad. To cut a long story short I had a scan and was told it was nothing to worry about. Not long after I had another couple of nodes appear in the back of my neck, one of which is still there years later but I try to not let it worry me now as I know that lymph nodes sometimes never go back down.
You've done the best thing in sorting out a doctors appointment as at least you can get the reassurance that everything is okay which I’m sure it will be.
Honestly I think it depends on the doctor who checks you out and if they have never seen them before. I have similar in my neck and my pcp never cares about them, thinks they are fine. But once in a while if I see somebody who isn't familiar with me they ask about it. My anxiety got raised a bit before because I saw a new dental hygienist who made a comment about them but the dentist had no concerns. Sometimes they just stay bigger.
My dentist gave me antibiotics even though there wasn't an infection. Took them and the nodes are still up.
I’ve been through this lymph node anxiety before (as many other health anxiety sufferers have done too). I’ve had a grape size one under my left ear for at least 5 years that’s hard and doesn’t move. During covid it worried me so much I went to the doctors and was referred (more because of another issue in my neck) and I spiralled so bad. To cut a long story short I had a scan and was told it was nothing to worry about. Not long after I had another couple of nodes appear in the back of my neck, one of which is still there years later but I try to not let it worry me now as I know that lymph nodes sometimes never go back down.
You've done the best thing in sorting out a doctors appointment as at least you can get the reassurance that everything is okay which I’m sure it will be.
Did you suffer with scanxiety? I'd obviously have one if I'm referred but my GOD does it send my panic through the roof just thinking about it.
Currently in bed with a book trying to make myself tired!
Thanks for the responses. They really do help in regards to calming my anxiety down a little so it's really appreciated.
it's essential to approach the situation with empathy and understanding. Health anxiety can be incredibly overwhelming, especially when dealing with symptoms that are difficult to interpret. Jase, it's good that you're seeking medical advice. It's crucial to remember that swollen lymph nodes can have many benign causes. While it's challenging, try to focus on activities that can help manage your anxiety until your appointment. Writing down your concerns, as suggested by Poppy, is an excellent way to ensure you cover all your questions with your GP. Also, remember that you're not alone in these feelings, and seeking support, whether through friends, family, or professionals, can be beneficial.
Struggling this morning. I can't stop (gently) feeling them and I'm paranoid that they're growing. My health anxiety keeps screaming at me that I've got no infection so these nodes must be up due to cancer, and since you've had the nodes for so long, the cancer has more than likely spread.
Just knowing I've got to go to the doctors about this is filling me with dread. I'm a wreck in any kind of medical setting.
EDIT: Called my friend because I'm a mess again. She was brilliant, trying to reassure me. Told me cancer nodes are like golf balls and are as hard as rock, matted in place, etc.
Not doing much today. Think I'll go for a walk to try and clear my head.
I'm now thinking it's probably down to the fact I've got lymphoma when I link it with the swollen lymph nodes I've got.
Try to remember at this point it’s not a fact. I can’t remember where I heard this, but someone once said “it’s not cancer until it’s cancer”. It’s really good that you are getting things checked, and I won’t say don’t worry because that in the history of the world never helped anyone. But also don’t treat your worry as if the worry were a fact.
Is there an element of 'back covering' from your dentist here? The only reason I ask is because last May at my own dentist, he drew attention to a red mark on the roof of my mouth. He asked me how long it had been there.
I said I didn't know as I hadn't noticed it. He offered to refer me. It turns out I'd burnt it with drinking hot chocolate too quickly, in the middle of the night with no memory of it.
Hope everything turns out ok for you Jase.
alpacagirl
10-01-24, 05:13
Have some reassurance in that they've been enlarged for "years" and nothing bad has happened in that time. Plus the fact that you haven't felt ill is another good sign where lymphoma is concerned. I've had raised ones in my neck for some time and the doctor even thought they felt big enough to warrant an ultrasound ( which was perfectly normal). I have ones under my left armpit that haven't gone down completely since the first Covid vaccination. My son still has the ones on the back of his neck enlarged since he had glandular fever 10 years ago. So some do just stay enlarged for no specific reason. Good to have it checked but please don't add the extra stress. I too have health anxiety. I know how hard it is but keep reminding yourself " just because you think it, doesn't make it true".
WiredIncorrectly
10-01-24, 13:11
It's a bit odd that I read this just as I've made a post with very similar issues. And I'm feeling the same way as you. Exactly the same in fact. The submandibular lymph nodes (there's glands there too) are related to the labial glands (which is my current issue). How do we even know these words? It means we Google too much. Probably not a good thing.
Health anxiety is rotten. I hate it. It ruins your day/week/month. I'm no stranger to node anxiety. I've worried over neck nodes for years. I'm sure there's old posts in my post history during moments I was like this. They do nothing to reassure me.
It's hell.
WiredIncorrectly
10-01-24, 13:32
I've just found this super helpful btw: https://www.youtube.com/watch?v=x_pr0g4M5jY
It's a video on lymph node anxiety. She says something true. The more you check, the worse you feel. You expect to reassured by constantly checking but the opposite happens.
Have some reassurance in that they've been enlarged for "years" and nothing bad has happened in that time. Plus the fact that you haven't felt ill is another good sign where lymphoma is concerned. I've had raised ones in my neck for some time and the doctor even thought they felt big enough to warrant an ultrasound ( which was perfectly normal). I have ones under my left armpit that haven't gone down completely since the first Covid vaccination. My son still has the ones on the back of his neck enlarged since he had glandular fever 10 years ago. So some do just stay enlarged for no specific reason. Good to have it checked but please don't add the extra stress. I too have health anxiety. I know how hard it is but keep reminding yourself " just because you think it, doesn't make it true".
Yeah, that's what the rational part of my brain keeps trying to bring up but that rational part keeps getting absolutely hammered by the health anxiety part! If I've been walking around with enlarged nodes for 10-15 years without any symptoms and without them getting bigger/changing whatsoever, chances are nothing sinister is going on.
It's a bit odd that I read this just as I've made a post with very similar issues. And I'm feeling the same way as you. Exactly the same in fact. The submandibular lymph nodes (there's glands there too) are related to the labial glands (which is my current issue). How do we even know these words? It means we Google too much. Probably not a good thing.
Health anxiety is rotten. I hate it. It ruins your day/week/month. I'm no stranger to node anxiety. I've worried over neck nodes for years. I'm sure there's old posts in my post history during moments I was like this. They do nothing to reassure me.
It's hell.
It really is. It's a f**king nasty condition that I truly wouldn't wish on my worst enemy. It's utterly all-encompassing and I find it difficult to function at even the most basic of levels.
I've just found this super helpful btw: https://www.youtube.com/watch?v=x_pr0g4M5jY
It's a video on lymph node anxiety. She says something true. The more you check, the worse you feel. You expect to reassured by constantly checking but the opposite happens.
Thanks! Will give this a watch tonight when I find my fears are at their worst.
So I had my appointment. My GP felt all around the back and front of my neck, along with my collarbone area. She felt the nodes but she said she wouldn't even order an ultrasound on them because they weren't enlarged at all for her. Explained about the mechanics of them and told me she currently has some lymphoma patients and how I present with nothing she's worried about whatsoever. She even said she has a couple of lymph nodes she could feel behind her ear.
I'm very fortunate to have such a kind and empathetic doctor because I know a lot of people just don't have that. She truly cares for her patients and she spent such a large amount of time trying to calm me down and reassure me. She's suggested I try some talking therapies to get to grips with my health anxiety so she made a referral there and then.
It's a struggle and it always will be but I'll try and hold on to our appointment today and the words she said.
Glad it was such a positive appointment! Doctors like that are worth their weight in gold, I swear. I had a doctor like that for several years who was wonderful; he retired about five years ago and I haven't found anyone I like nearly as much.
Glad it was such a positive appointment! Doctors like that are worth their weight in gold, I swear. I had a doctor like that for several years who was wonderful; he retired about five years ago and I haven't found anyone I like nearly as much.
Thanks Poppy. I keep telling my GP she can never retire and she just laughs :) She really is an absolute diamond.
alpacagirl
12-01-24, 04:46
Glad all is ok :). Health anxiety really does make us magnify every little thing in our body. Even the normal things. It's horrible. I'm glad you have a wonderful GP. I finally found one a few years back. I've bawled my eyes out in front of her and she's was so kind. She knows I have health anxiety and knows how to handle me. I told her a while back to only send me for tests if she herself thought they were necessary NOT for anxiety reassurance.
I truly marvel at just what anxiety can do to you. Over the past couple of days I've developed itching on and off pretty much all over my body! Am I trying to stop myself from going down the lymphoma rabbit hole? YES! It's hard but I do fully accept the fact my anxiety is more than likely manifesting into a symptom I've read so much about recently.
I know this fear all too well.
My youngest son at about 4 years old had a string of swollen glands on the side of his neck.
After weeks of literally making myself sick over this. .. his dr told me, nodes can swell and stay permanently. They form a type of scar tissue and stay forever.
My little guy is 30 now, if he moves his head a certain angle, I can still see them.
Bumps and lumps are horrid with HA.
fizzymoon86
23-01-24, 08:08
I just wanted to hop on to this post and hopefully this will help. I had a rather nasty case of glandular fever when I was about 15/16. My neck was so ridiculously swollen with all of the raised lymph nodes! I should also add I had mumps as a baby which also affects the lymph nodes.
Since having glandular fever, I have lymph nodes in the right side of my neck that never really go down properly to the point where I can’t feel them. They react instantly to any kind of illness. My doctor said they are scarred from my previous illnesses. I get worried about them from time to time and I’ve been the doctors a few times over the years to have them felt and checked but my doctor hasn’t been concerned.
Lymph nodes are funny things, we’re brainwashed to believe that if they are there then we’re obviously dying but there can be benign reasons why they’re just hanging around.
Sent from my iPhone using Tapatalk
Thank you for the reassuring words everyone.
Unfortunately I have a new symptom. Know when you have that frog feeling in your throat? I have that but it's at the top of my chest. It feels like I have to clear my throat but it doesn't get rid of the feeling. Health anxiety is telling me it's down to swollen chest lymph nodes. I'm seeing my GP again tomorrow so I'll mention it then. It just feels never-ending.
Had another appointment with my GP. She once again felt around the front and back of my neck and all around the collarbone area and she couldn't feel anything at all. I apologised to her because it felt like I was wasting her time but unsurprisingly she was lovely and told me that I wasn't at all and she acknowledges that health anxiety is an absolutely horrible mental health condition. I brought up the itching and random abdominal tenderness and she didn't seem worried after I thoroughly explained my symptoms; she chalked it up to me being extremely aware and hypersensitive to my own body at the minute.
Again, we were chatting for a good 20-30 minutes. She stressed that I could see her every week/every couple of weeks for as long as I wanted and she wouldn't mind in the slightest, as long as it provided me with some sort of calm, which it absolutely does. I honestly can't heep enough praise on her.
Sparkling_Fairy
25-01-24, 13:49
I am legit jealous of your GP. She sounds like the best!
Another week and something else crops up. The left hand side abdominal tenderness seems to be slightly worse and I've got pain in the upper left hand side of my back; my health anxiety is dragging me down the enlarged spleen rabbit hole because of course it is. It feels like I can't get a moments peace at the minute. It's just horrible.
I am legit jealous of your GP. She sounds like the best!
She really is.
Powered by vBulletin® Version 4.2.5 Copyright © 2024 vBulletin Solutions Inc. All rights reserved.