AIBU? worrying about lymphoma

[mumstheword1x]

trigger warning: lymphoma.

I’m concerned I have lymphoma.

I’ve had collarbone lymph nodes for 5 years, which I’ve been able to palpate. I’ve always found them by shrugging them up so the area is really puffy and they’re soft, and hop on and off the collarbone.

I’ve had 3 ultrasounds which have had no concerns.

3.5 weeks ago, I get a horrible flu cold & I’ve been coughing ever since, it feels like a post nasal drip cough as I’m having to clear my throat from phlegm ( sorry )!

Last week I started ‘searching’ again, as I have health anxiety and I started feeling my lymph nodes again.

I’ve worked out I can feel my collarbone lymph nodes if I make my clavicle extremely hollow and feel under the collarbone, I can only feel them with the hand on the side I’m examining ( for example, my right clavicle I can feel them with my right hand, but I can’t feel the right ones with my left hand on my right side- if this makes sense )

I’m worried as I’ve never felt them this way before & now I’m worried they’re bigger, even though they don’t seem bigger the way I’ve always felt them and located them.

my husband says they feel no bigger than a lentil, they’re soft and squishy, EXTREMELY MOBILE.

I’ve had lymphoma on my mind for the past few days and in turn, I’ve developed itchy skin - is this anxiety or is this lymphoma?

I don’t think the NHS would do a 4th scan, and I’m really trying to sit with my anxiety and not run to the doctors! 😭

AIBU to myself by having these thoughts? - I've just started new anxiety meds, but I’ve heard they take time to kick in. Ugh!

Continue to manage your anxiety by sitting with the distress. Any reassurance we may be able to give you is only going to provide temporary relief before the cycle starts again. You know it... Deep breaths.

This is your anxiety. You've had these nodes ultrasounded and they're not lymphoma. They're up because they're fighting an infection, that's their job. Hang in there till your anxiety meds start to kick in.

Anxiety. You’ve had them scanned and they are fine. It’s more likely that they are swollen due to you recently being unwell

I can also feel a lymph node in my collar bone. Got it checked out 15 years ago and there was no concerns.

This is your anxiety talking

Thank you. I also have had to show the ultrasound sonographer in the past where they are to locate them on the scan. I guess my anxiety is telling me they’re bigger and I then can’t get out of the cycle of the fact I’ve found them another way..

my husband tells me I get myself into some really weird positions to find them and that I wouldn’t have to ‘find’ bad nodes, they’d present

Can you still feel your one now?

By all means, get them checked but go private so that you aren’t taking up an NHS appointment. And then get some support for your anxiety.

If you had cancer, it wouldn’t just be hanging out for 5 years without making you very ill. I DO have cancer, in the lymph nodes in my neck/collarbone. It was really obvious and painful and grew quickly over a couple months time.

I would focus on getting the support you need and actually live your life. You don’t know what a blessing it is to be healthy and well until you aren’t. You will likely live a long, healthy life (gosh, I could only wish to be so lucky!). Don’t waste it chasing reasons to be miserable.

This is anxiety, you've had scans and there's no issues.

Everyone and their dog has a cough and cold atm.

Winter skin causes itching due to dryness and the heating being on, take an antihistamine to see if it helps.

Make an appt with the GP to discuss your anxiety.

I’m incredibly sorry as this must seem so incentive to someone living with it, when someone is just worrying about it 🤍 I really appreciate you responding to me and I really wish you all the best.

i think Google put the fear of god into me about my lymphnodes being there a few years back and I’m aware they’re ’bad ones’ to feel. X

I can still feel it now , yes. I can move it around. The specialist was completely unbothered and said many slim people can feel supraclavicular nodes (despite what Google says).

I also convinced myself I had lymphoma last year when I had raised axillary nodes, and even felt itchy and sweaty at night. Once my ultrasound came back clear, the signs stopped. It was 100% all in my head, but the mind is a powerful thing.

The lymph nodes are still there (about lima bean sized) but no bigger. They think it is to do with me breastfeeding.

You have my sympathy, as I have health anxiety and it sucks :(

My son has been in remission from lymphoma for almost a year and a half now and it does seem to be your anxiety talking here. They've been scanned already, you don't really have any other symptoms and colds/coughs are common at this time of year.

Yes, i can move it around too.. if i shrug and make the area ‘fatty’ i can pop it on and off my collarbone, i hate it- then when i hollow my clavicle, i can feel it just under my collarbone.

you’re so right, Google put the fear of god into me - I hate Google so much sometimes, but googling Supraclavicular lymph nodes was a dark Google search with it saying 99.9% of them are malignant.

I have one identical on the otherside too, they’re ‘soft’ although they’re not what I’d consider soft.. they are mobile.

I just hate them, I noticed mine after my flu vaccination in pregnancy, I had flu on one side and whooping cough on the other! 🤷🏻‍♀️ I only found them as my collarbone hurt at the time- but they haven’t seem to gone back to nothing.

Honestly, I'd try not to worry here.

The way you describe yours are just like mine, and the specialist said loads and loads of people have these.

Infections and vaccines can all make your nodes pop up, and they do not always go back down quickly. Lots of people get 'shotty' nodes after they pop up and they can stay raised for many years.

Chat gpt and Google are very black and white about palpable lymph nodes, but they really over simplify things IMO

Supraclavicular lymph nodes was a dark Google search with it saying 99.9% of them are malignant.

99.9% of the haematologists I know (and I know quite a few) would say that Google is talking absolute shite there. That's nonsense of course 99.9% of supraclavicular lymph nodes are not malignant. Anatomy varies, you can have scar tissue, and you've said yourself you had to point them out to the ultrasound tech - that shows how totally normal yours are if a tech didn't even see what lumps they were supposed to be scanning!

You haven't got lymphoma, you've got health anxiety.

As PPs have all said, this is health anxiety talking, not lymphoma. However, just in case it helps at all, I had Hodgkins lymphoma when I was 20 and I'm 57 now, and fit and healthy (or I would be if I said no to cake more often).

As others have said, if you had lymphoma you would have other symptoms apart from the lymph nodes and apart from itchy skin by now, and wouldn't be feeling at all well.

Dr Google can be useful but is also a nightmare.

Yep.

My son had non Hodgkin's lymphoma and it soon became apparent that something wasn't right at all because of how poorly he was at the time.

So sorry about your son, @Kirbert2 , and it is wonderful news that he is now in remission!

Thanks. I'm glad to hear that you are doing well too.

I always thought it was non- movable lumps you needed to be watchful of?

it definitely sounds like your health anxiety. If you book a GP appointment it should be for that - even if you say you’re concerned about your health anxiety because you’ve found these and now think it’s cancer. That way the dr can reassure you about what you’ve found as well as seeing if you need further help with the anxiety support.

If you want a scan, you should pay to go privately, as it really wouldn’t be fair to have another NHS one when you know it’s your anxiety and not something to actually worry about.

Tell your anxiety it's being ridiculous!

Remind your anxiety how incredibly unlikely it would to be anything sinister after THREE clear ultrasounds!!

then go distract yourself with something fun to do and keep your mind busy xx

Saw my GP today, managed to get an appointment - I can’t lie, I felt a little dismissed. Turns out that my right side was only scanned in 2022 and wasn’t scanned since. Only my left in 2024, which doesn’t help as my right is the one I have concerns about.

he just marked it as ‘normal lymph glands, no ultrasound required’

he couldn’t feel them when I was relaxed, only when I shrugged.

OP you haven't got lymphoma. Lymphoma doesn't only appear when you shrug, nor does it hang around doing nothing since 2022. Your GP hasn't been dismissive of you, they've palpated normal lymph glands and marked them as normal lymph glands because you've got normal lymph glands.

Again, you haven't got lymphoma you've got health anxiety.

I’m so concerned because I’ve spiralled more since the appointment, I can’t stop feeling it. I’ve called up to speak about my health anxiety, as I agree. This is the main issue.

That's great that you acknowledge that, it's hard when you're in the midst of the panic to do anything other than panic! Your anxiety is the only thing happening here, honestly.

Stay away from Dr Google, try to give your neck a rest from being messed with as that will only make things sore and then add to your anxiety, when it pops into your head remind yourself that your nodes have been palpated by a doctor today and they are normal. Write it on a post it note and look at it as often as you have the thought. Anxiety is a proper bastard but you can do that, you can.

I’ve had lymphoma. In my neck. Trust me you’d know. It was a grape one minute and then a walnut. In a week or so. You could physically see it.

Luckily for most it’s curative. I’m in good health now but when I had lymphoma I felt poorly and fatigued.

You don’t have lymphoma. Lymph nodes are there to do a job and sounds like yours are doing a great one.