Thought I had lymphoma - I don't!

Hi all

I recently got very worried that I had lymphoma and spent a lot of time stressing out and reading this forum and others on the web. I told myself that once I was sure I was OK I would post a message on these forums to try and help people in the same position I was in, and because so many people who are worried about having lymphoma never post again once they're all clear. So here is my little story!

At the start of September 2017 I got a nasty cold which turned into laryngitis and a chest infection. Had a week of antibiotics and got 'better' but it took me well over a month to stop feeling exhausted and the niggling cough never went away. At the end of November I got another virus, just a sore throat and hoarseness for a few days but again it utterly wiped me out and for much of the next month I had days where I felt really terrible and struggled with energy levels. And all the time there was this irritating little cough.

I started to panic when I noticed a lump in my neck on the left side kind of above my collarbone around the time I had the sore throat. I'd noticed 'puffiness' in this area since September but just thought it was fat! Now I started to wonder... I visited my Dr who thought maybe I had glandular fever or something else was going on and he was great and sent me for a chest XRay and blood tests. All came back clear except very slightly raised inflammatory markers.

I was still worried though - since visiting him I'd noticed two more larger lumps in the same sort of area of my neck. My anxiety was extra as my sister had had Hodgkin's Lymphoma years ago which was discovered by a neck lump and I knew this could raise my chances of having it. He understood my concerns and arranged an ultrasound. Christmas was coming however and it would be at least a month before I could have the scan.

The lumps didn't go away, I didn't feel any better, and prodding the lumps and googling my symptoms started to become a bit of an obsession. Added to this I started to have mild night sweats a couple of times a week. Great! My partner became equally worried and we started actually putting plans on hold in case I was diagnosed and had to have chemo. So we decided to pay for a private scan to put our minds at rest. The private hospital wouldn't do a CT scan for just my neck (we wanted this as I'd read it was more reliable than ultrasound) so we went ahead with an ultrasound which I managed to get a couple of weeks quicker than the NHS one. For info for people who are wondering this cost about £285 and we claimed 75% of the cost back on our private health insurance, so it wasn't too much to pay in the end for some peace of mind.

At the scan I saw the very senior radiologist looking at the screen and taking screengrabs and wondered what he was seeing. At the end of the scan I asked him and he said "You're absolutely fine. There are several reactive nodes but nothing that shows any signs of Hodgkin's or any other malignancy and as you've got a thin neck they're easier to feel. You've got nothing to worry about."

It felt like a weight off, I was so relieved. However, that night I had the worst night sweat yet and my partner and I woke feeling very deflated. I also couldn't stop wondering 'what exactly are these nodes reacting to?'. So I spoke to my Dr again, who was a little surprised I had gone private, but talked it all through with me. Essentially he told me to stop worrying, there was nothing of any concern. If it would put my mind at rest he would arrange some more blood tests to double check the inflammatory markers and everything else.

So here I am a week or so later - the blood test is tomorrow and I don't even feel like there is much point going! Since the private ultrasound I have tried to make some changes to improve my health. I'm a fairly healthy person but was obviously struggling to fight off those viruses in autumn/winter so decided my immune system must need a boost.

I've started taking multivitamins and echinacea, exercising more, eating better and drinking less alcohol. Crucially, I've also started taking antihistamines as one of the other things that popped up in my endless Google searches was allergies. I didn't think that could be it but it seems that perhaps it was a factor as my lumps have finally started to get smaller and the never ending cough has cleared up.

To do a little summary for anyone in my position, the things that I think have helped me to feel better are:

1. Distraction - the Christmas break spending time with friends and family stopped me focusing on my health so much. The brain is SO significant in all this and I don't think my anxiety was doing me any good at all.
2. The ultrasound - despite the fear the morning after the bad night sweat, overall the ultrasound really helped to settle my mind and I would certainly consider paying privately again in the same situation.
3. Antihistamines - obviously I'm not a medical professional but I would suggest that anyone struggling with raised nodes and an irritating cough or nose/throat symptoms should give this a whirl - the positive effects on my symptoms have been obvious within a week and I wish I had thought to try it sooner, if my mind hadn't been so clouded by thoughts of lymphoma!!

I'm not sure about the night sweats but they could be anxiety, hormones or even the temperature of my bedroom - either way I'm no longer worried that they are a 'b symptom' of lymphoma!

I hope this helps and good luck to everyone going through what I went through, I hope you get some peace of mind soon.

Anne

  • Hi Olivia just wanted an update. How are you doing now?

  • Hi Beth just wanted an update. How are you doing now? 

  • Hi nideba thank you for asking. Nothing further came of the results to be honest and the lumps have gone down since I posted on here. The last thing that happened was I spoke to a specialist who saw from an X-ray that I had multiple enlarged lymph nodes and mostly in my abdomen but didn't want to do a biopsy at that stage because the procedure would be very invasive and he didn't think it was worth doing as all my other results had come back clear. I am doing a lot better and whatever it was seems to have gone on it's own :) 

  • Hi all,

     

    currently waiting for my ultrasound appointment. I'm pretty convinced I have this - night sweats 5 out of 7 nights a week for last 7 years (just put it down to my anxiety), also 2 lumps in neck for at least 2 months (may even be years) one the size of an olive the other one slightly smaller. I'm 30 next month, I can't see this not being lymphoma.

    sam x

  • Hi all,

    (24 year old male)

    If you're reading this, you were probably like me 5/6 weeks ago - I found a lump in my neck and also other little bumps around my body including the groin area. I was severely anxious - struggling to sleep and not going to lie despite this forum being great - a lot of it did come down to reading through numerous threads on here which ended up in me convincing myself I had lymphoma. I also work in clinical trials so I was constnalty looking at blood results and sending myself MAD! Because of my anxiety, I was basically giving myself symptoms (e.g. itching - where I was convinced I had an awful itch around all my body - now I know this was most likely my head and trying to put 2 + 2 together by reading so much stuff on the internet). Also, even the slighest of fatigue + night sweats (it's been hot recently remember) not eveyrthing will link to lymphoma or what is in your head.

    I promised myself I would post on here for the first time if my news was good or bad. I can happily say that I had an ultrasound and my nodes came back as reactive so I think I am in the all clear. Some bits of advice:

    - DONT TOUCH YOUR LUMP. I was doing this consisntelty and then would send myself mad when I woke up the next morning and it was noticeably bigger (which it was from me pressing it probs). As my doc said, they are like scabs - they really don't like being touched.

    - HASSLE YOUR DOCS. I know this sounds awful but the docs didn't think it anything was serious but in my head I wasn't convinced (youve probs read about blood results etc not giving the full picture). I told them how bad my anxiety was and how it was affecting my life and that's what made them do more tests and book me in for an ultransound. DOn't worry about what your doc thinks of you doing this - who cares really?  just beg them for a test and tell them you know that's the only thing that will put your mind at ease / make you feel better. 

    - STAY OFF THE INTERNET + DISTRACT YOURSELF - This forum is great but if you are having anxious thoughts then it's not really the place for you. It will send your head in a million directions and will also make you go into overdrive thinking about all the symptoms people have mentioned on here before (which you might end up giving yourself like me)

     

    I wish you all the best and hope I never have to come back to this forum as it caused me a lot of distress, but more importantly I hope this post helps someone. Stay positive people.

     

    Peace and love x

     

     

     

  • Hi 

    I was wandering if after your scans your itching stopped once you knew you had the All clear?

    I too have a couple of nodes had ultrasound private and they said nothing looks malignant or sinister just a few reactive nodes 

    I had a fbc about 3 weeks ago was all ok but I can't seem to shift the itch but deep down I'm still really struggling with anxiety so I'm trying to put the itch down to that as I've had the test and is all ok? 
    how long did your itch take to go and how severe was it 

  • Hi Hannah,

    Hope you are well.

    My itching pretty much stopped when I knew I had the all clear, not completely but I think the main thing is that I wasn't attributing my itch to a possible lymphoma symptom, I was more just seeing it as a general itch that everyone has from time to time (easy to forget this when your anxiety is off the roof and you've spent days and days googling / on forums).

    I wouldn't say my itch wasn't majorly severe, I wasn't itching until I bleed or itching the same spot for ages - it was more of a random itch that occured all around my body and would sometimes be worse at night. I personally think it was anxiety based - it is normal to feel itchy from time to time but once you get in your head that the itch could be something serious, your head will sub-consciously be waiting for that next itch and where it's going to come from and you'll realise your itching a lot more than what you would normally do.

    If you have the all clear, I would really try your best to distract yourself for now and stay positive. You've done everything you can do if it was something serious which is what you have to remember. My lumps are still there but I feel  a lot better in myself, my plan now is to go to to the doctors in a few months if they are still there (or sooner if I get any symptoms) but until then I am just trying to make the whole thing a distant memory and enjoy the world opening up again. I feel like that could help you out a lot too. It's all about distraction basically.

    All the best and feel free to drop me a message for some support anytime!

     

  • Thanks for the reply 

    I also feel like my itch could be anxiety related as days I feel more relaxed I'm not really itching and mine is also a little worse at night 

    did the doctors that done your scan advise to go back if the nodes hadn't gone down? Mine still haven't gone down and unsure wether to accept that's how they are or go back again 

  • No problem.

    I'm no doctor but it sounds to me like it could be anxiety related especially if it comes + goes. Symptoms will always be worse when you start thinking about them for me.

    The doctors didn't advise me that no, infact they just told me not to worry. My nodes are still present too which sometimes does make me wonder but I just choose to trust the doctors and have decided that I will go back in a few months time for peace of mind if i think it's necccessary.

     

  • Hi daisy 

    I no you posted quite a while ago 

    but I've been experiencing Similar symptoms to you I've had bloods ultrasounds ect which have all come back ok but it's the itching skin that's bothering me, I noticed you said you had itchy skin did you ever get to the bottom of what was causing that? 
     

    Really appreciate a reply ️

    Hannah