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jojo2316
12-12-20, 19:47
Helllooo - it’s me again. I haven’t been here for a while and I’m so sorry that I am here now, posting about myself and not helping someone else. It’s just I could do with a little hand holding and you guys are so good at that...
So. I discovered a lump at the base of my skull, which feels like a hard pea. I spoke to the doctor, who said to leave it and that it would probably go away. It didn’t go after a couple of weeks so I showed it to the doctor who said she thought it was a lymph node, not even that big, and not to worry, just keep an eye on it. I told her I very much would worry as health anxiety is my “thing”! She laughed and agreed to refer me to an ultrasound.
So I had that and the radiologist said it is a normal looking lymph node (though he agreed it felt quite hard). He said it wasn’t even particularly enlarged at 5mm on the short axis (the one they are interested in apparently) and 9mm in the long axis. He said it’s not something they would follow up unless it gets much larger or “other lumps or bumps” appear.
I know I should feel reassured but I really don’t. Perhaps because I feel obligated to monitor its size and search for other lumps. A health anxietyer’s nightmare!! Of course it feels bigger to me every day - and now I think I can feel another lymph node under my jaw. I’m really trying to be sensible - but could use some help...
thank yooouuuu xxxx

pulisa
12-12-20, 19:52
What or who is making you feel motivated to monitor its size/search for other lesions? What do you get out of doing this? xx

jojo2316
12-12-20, 20:10
Oh Pulisa - hi and thank you so muchxxxx
I make myself terrified is what I do. I dig deep into my neck and convince myself I can feel bumps of asymmetries which were not there before. I give myself bruises and make myself sore. I google lymph node characteristics on ultrasounds. I remember how the radiologist showed me a blood vessel in my node and how he told me that’s how he knew it was a node not a cyst.... but then I panic because I find things on google which say vascularisation of nodes can be a sign of malignancy. I spiral is what I do. It’s horrible xx

MrLurcher
12-12-20, 20:18
Hi Jojo, it's nice to hear from you - but obviously not for the right reasons!

You helped me out so much in the past, so hopefully this can be of some reassurance to you. My daughter who was 4 at the time 'developed' a pea sized lump (or we just found it and it had been there for a while, who knows) at the back lower third of her skull. We left it two weeks, still there, so we took her to the doc who felt it and just said possibly a lymph node, but nothing to worry about. It was still there for a few more weeks until we stopped checking, by we I mean me as my partner stopped worrying after the doc appt - I of course didn't. Anyway it's gone completely now, and the doc did say it may always be there now, or it could disappear.

Anyway, I don't know how much help that is, and hope you're keeping well apart from the worries.

jojo2316
12-12-20, 20:24
Thank you MrLurcher, so much, for that reassuring story. I am so glad your little girl is ok. And how are you? Still here, I see. It never quite leaves us, does it?!

MrLurcher
12-12-20, 20:26
Thank you MrLurcher, so much, for that reassuring story. I am so glad your little girl is ok. And how are you? Still here, I see. It never quite leaves us, does it?!

Never leaves, comes in waves. The positive is at least I'm keeping the likes of Pulisa, BlueIris and NoraB busy!

Shouldn't joke too much I suppose, HA has been a pain in the *** recently.

jojo2316
12-12-20, 20:29
Never leaves, comes in waves. The positive is at least I'm keeping the likes of Pulisa, BlueIris and NoraB busy!

They are the very best though aren’t they? I can honestly say they have helped me as much as any therapist- Pulisa especially. And it’s particularly touching given that they all have very real battles of their own.

pulisa
12-12-20, 20:42
It's easy to dole out advice though..Not so easy when you are caught up in the torment and know what to do but can't because the compulsions are too overwhelming xx

pulisa
12-12-20, 20:45
Oh Pulisa - hi and thank you so muchxxxx
I make myself terrified is what I do. I dig deep into my neck and convince myself I can feel bumps of asymmetries which were not there before. I give myself bruises and make myself sore. I google lymph node characteristics on ultrasounds. I remember how the radiologist showed me a blood vessel in my node and how he told me that’s how he knew it was a node not a cyst.... but then I panic because I find things on google which say vascularisation of nodes can be a sign of malignancy. I spiral is what I do. It’s horrible xx

If you were to be told that logging onto google causes brain cancer would you still do it?

jojo2316
12-12-20, 21:28
If you were to be told that logging onto google causes brain cancer would you still do it?
Haha. It’s possible I would you know. The compulsion is that strong during a spiral. I wish I had a fraction of your willpower!! Xx

pulisa
13-12-20, 08:07
Oh I completely get that..and as for my willpower..I fail miserably in other areas!:D I have managed to get a grip on my HA though by refusing to have tests which aren't based on clinical need and that does take a bit of strength! xx

Scass
13-12-20, 08:26
Hey Jojo, lovely to see you.
It sounds to me like you’ve been checked over and given the all clear, and now you have to try very hard to stop checking it so often. Maybe distract yourself with something else when you get the urge. I bet it’ll just go soon, or won’t change at all and will just become a new thing that’s just harmlessly there.
Xx


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jojo2316
13-12-20, 11:17
Oh I completely get that..and as for my willpower..I fail miserably in other areas!:D I have managed to get a grip on my HA though by refusing to have tests which aren't based on clinical need and that does take a bit of strength! xx

We all have our demons dear Pulisa. But you are very clever with how strict you are in this department. It makes a real difference, I know. And yet when I am like this I cannot find your strength! Xx

jojo2316
13-12-20, 11:28
Hi Scass - it’s so lovely to see you too! How are you? And how is your little girl? Is she 8 now? I bet she is super excited about Christmas!
yes you are so so right. I absolutely need to stop self checking. I have actually created a hole in my neck, so deep am I digging to find (and finding, of COURSE!) extra little lymph nodes (the words “don’t worry unless other lumps appear” were totally triggering for me, although I know it’s just a standard thing to say).
And I am trying to distract myself by making Christmas cookies with my baby girl, but my fingers keep returning to my neck, and my mind is far down the rabbit hole. It sucks. But, like Mr Lurcher says, this HA beast comes in waves. And this too shall pass.
Anyway, lovely Scass - I’d love to hear a bit of your news!
xxx

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pulisa
13-12-20, 12:27
"Don't worry unless...." HA dynamite, isn't it?

You know what to do but at the moment you can't stop yourself self injuring (which is what it is). Please don't hurt yourself further, jojo..What will it achieve? You are trying to find proof of lymphoma but gouging a hole in your neck won't stop the fears xx

pulisa
13-12-20, 12:35
I expect you will be considering seeing a haematologist? Would it be worth it if your anxiety is really bad? To the point of you being unable to function?

I know it's not the way to go but...xx

jojo2316
13-12-20, 13:40
"Don't worry unless...." HA dynamite, isn't it?

You know what to do but at the moment you can't stop yourself self injuring (which is what it is). Please don't hurt yourself further, jojo..What will it achieve? You are trying to find proof of lymphoma but gouging a hole in your neck won't stop the fears xx

Funnily enough it’s not so much lymphoma that I’m worried about.... otherwise I’m sure I would already be sitting in a haematologist’s office! I’m not really sure why, since if an occipital node is cancerous, then lymphoma is the most likely thing - since the drainage area for that node is mostly the scalp and the ear. I suppose I’m less worried about lymphoma because I figure all but the most indolent kinds would’ve caused an increase in size over 6 weeks. Instead I’m more worried about nasopharyngeal cancer, which, just occasionally can metastasise there. That’s the HA brain for you. Straight to the least likely worst case scenario! Xx

Scass
13-12-20, 14:00
“Don’t worry unless” should be banned!

My little girl will be 7 in January! She’s pretty excited. Is yours? She must be 6 too?
I wanted to bake today but ran out of eggs and I can’t be doing with the supermarket on a Sunday!

Keep on keeping on xx


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jojo2316
13-12-20, 14:45
“Don’t worry unless” should be banned!

My little girl will be 7 in January! She’s pretty excited. Is yours? She must be 6 too?
I wanted to bake today but ran out of eggs and I can’t be doing with the supermarket on a Sunday!

Keep on keeping on xx


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Oh yes - I remember- a new year birthday. So double excitement for her! Mine is 7, and her birthday is July, so not for ages. 7 is a good age.... I have a vivid memory of the day before my 7th birthday and running down the garden feeling SO excited and thinking “even the birds are excited!”

pulisa
13-12-20, 18:14
Funnily enough it’s not so much lymphoma that I’m worried about.... otherwise I’m sure I would already be sitting in a haematologist’s office! I’m not really sure why, since if an occipital node is cancerous, then lymphoma is the most likely thing - since the drainage area for that node is mostly the scalp and the ear. I suppose I’m less worried about lymphoma because I figure all but the most indolent kinds would’ve caused an increase in size over 6 weeks. Instead I’m more worried about nasopharyngeal cancer, which, just occasionally can metastasise there. That’s the HA brain for you. Straight to the least likely worst case scenario! Xx

Yes you've been doing a lot of "research"...So it's an ENT referral then?

The joys of the carefree days of childhood...xx

jojo2316
13-12-20, 21:05
Yes you've been doing a lot of "research"...So it's an ENT referral then?

The joys of the carefree days of childhood...xx

PULISA!!!! Hahah! It’s not like you to be the voice of the devil! But, yes, I do love to contribute to the school fees of doctor’s children. So I may well request an ENT appointment. Even though I have been told not to worry (“unless”....!!!)
xx

nhelen79
13-12-20, 21:16
My son is only 2. Last year I discovered 2 hard lymph nodes (according to what I felt) behind both of his ears. Panic we took him to his primary care doc. She felt it and said she wanted to wait for 4 weeks and at the same time sent him for CBC test along with other tests for his 12 moths checkup. She said both were not at size that we need to be concerned.

The CBC came back normal. 4 weeks Later check up again. They felt smaller according to her. She said they might not go away. Need to accept them.

Now I‘ve learned to live with that.

You had an ultrasound. If anything dangerous, you would have been referred for biopsy. Doctors don’t take chances. Try to forget about it.

I have anxiety myself and so weird that I can see the logic in others’ situation but not mine :)

pulisa
13-12-20, 21:18
Well we all know that that old chestnut doesn't cut the mustard with rampant HA, don't we?!!:)

If the ENT bod gives you the all clear will THAT cut the mustard or will you "diversify"....?

pulisa
13-12-20, 21:22
Just wanted to add that my daughter had a lymph node removed from just behind her ear when she was about 10 after being referred to a paediatrician specialising in ENT. It was completely benign and she's had no further problems.

jojo2316
13-12-20, 21:25
Well we all know that that old chestnut doesn't cut the mustard with rampant HA, don't we?!!:)

If the ENT bod gives you the all clear will THAT cut the mustard or will you "diversify"....?

You know the beast so well Pulisa! An ENT wouldn’t rule out Lymphoma presumably- so I could potentially diversify into that? Or maybe I’ll jump down another rabbit hole entirely. ALS is always a good one. Mmmm. Options options!

jojo2316
13-12-20, 21:27
Just wanted to add that my daughter had a lymph node removed from just behind her ear when she was about 10 after being referred to a paediatrician specialising in ENT. It was completely benign and she's had no further problems.
This is actually really reassuring to hear. I guess these things do just crop up from time to time...

jojo2316
13-12-20, 21:28
My son is only 2. Last year I discovered 2 hard lymph nodes (according to what I felt) behind both of his ears. Panic we took him to his primary care doc. She felt it and said she wanted to wait for 4 weeks and at the same time sent him for CBC test along with other tests for his 12 moths checkup. She said both were not at size that we need to be concerned.

The CBC came back normal. 4 weeks Later check up again. They felt smaller according to her. She said they might not go away. Need to accept them.

Now I‘ve learned to live with that.

You had an ultrasound. If anything dangerous, you would have been referred for biopsy. Doctors don’t take chances. Try to forget about it.

I have anxiety myself and so weird that I can see the logic in others’ situation but not mine :)

I know - it’s always so much easier to be rational for other people isn’t it?!
Didn’t you recently have a breast lymph node, which turned out to be nothing too? X

pulisa
13-12-20, 21:35
You know the beast so well Pulisa! An ENT wouldn’t rule out Lymphoma presumably- so I could potentially diversify into that? Or maybe I’ll jump down another rabbit hole entirely. ALS is always a good one. Mmmm. Options options!

I think the lymphoma "option" would be the next avenue to explore/"research". I do hope you can reach a compromise with your HA and set some limits? I've found rules are really helpful but I am very good at imposing restrictions on myself as you know:D. xx

jojo2316
13-12-20, 21:50
I think the lymphoma "option" would be the next avenue to explore/"research". I do hope you can reach a compromise with your HA and set some limits? I've found rules are really helpful but I am very good at imposing restrictions on myself as you know:D. xx

I know you are - it’s your way of coping. We all do what we have to do and I think you do amazingly (although I suspect you will disagree ;-) )