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

  • Thanks for posting an update daisy

     

    I have a tonsillectomy scheduled in a week as i was having on and off sore throat and weight loss and the doctor saw one of my tonsil was slightly bigger than the other

     

    I'm a nervous wreck at the moment as I'm thinking it could be throat cancer and i have a little one who is not even 2 yet and like you i am so very down at the thought of something going wrong.

     

    I have been scheduled for the surgery for nearly 2 months now so it's been an aweful time waiting. I'm due to speak to the doctor on tuesday to see if a biopsy can't be done instead as the recovery from tonsillectomy in adults seem horrendous and i'm nervous about it mid covid. 

     

    I just can't wait to have some answers as this is really making me miserable. I had CMV as a teenager (another virus that causes mononucleosis) and i know it can reactivate. It does not explain the enlarged tonsil but at least as far as weight loss and tiredness are concerned i'm hoping something like this could explain it (or having a very active toddler!)

     

    Counting the days now to getting the results and hope for a similar outcome as you had

  • Hi CGZ 

     I had my tonsils out at the start of the year as one was enlarged. I didn't have any weight loss at the time but suffered  from constant sore throats & it was starting to cause difficulties with my breathing. Fortunately my biopsy results came back fine which was a huge relief but they were chronically inflamed. 
    I can't say the procedure isn't painful (for a good 2 weeks afterwards) but I'm pleased now I went ahead with it. 
    One of the hardest things to determine sometimes is how tired we really are, I put a lot down to being a mummy too but what scared me the most recently was how physically exhausted I've been, it's almost like my body isn't mine at the moment. you know your body best so go with your instincts and make sure your worries are addressed. 

    Thinking of you & wishing you all the very best with your Appointments. Please let me know how you get on. 

    Daisy xx

     

  • I'm so pleased it was negative for you, you must be feeling so relieved. Thanks for taking the time to reply it's really nice to hear a story of someone with one enlarged tonsil that didn't turn out to be cancer

     

    I'm speaking to the surgeon tuesday and will ask if he thinks a biopsy and scans could be enough in a first instance as I haven't really had a sore throat in a while and when I did they were mild so I would be quite happy if I can save myself the tonsillectomy recovery.

     

    I think he mentioned tonsillectomy was more likely to detect cancer than biopsy + panendoscopy as it analyses the entire tonsil rather than just a part but I'll see what he says. Have you been feeling better since they took your tonsils out or are you still quite exhausted?

  • Hey Daisy,  the ENT consultant called me. He says he reckons I have chronic rhinitis. I'm praying he's right. But many of my symptoms don't add up to simply this. Plus I'm seeing him next Tuesday. So it's 2 weeks from seeing doctor to getting an appointment with a specialist. Seems extreme for Rhinitis. Hopefully they are just being over cautious. P.s I'm not complaining. I'm delighted I'm being seen so quickly and nothing going un-missed. Thank you for replying. How are you doing now? Sending hugs xx

  • Hey guys, I've had a very similar experience to this fella. Had my results back today and it all came back negative. Been getting myself in a state mentally for months over this, reading fourms and googling symptoms thinking I have cancer. Just remember if you're reading this, it's not always worse case scinario! But if you do feel like you have a problem please go see your GP and get the necessary tests done. No matter what you'll be in good hands & if not then good on you as well. I've lost a friend due to him ignoring symptoms of an illness until it was too late, always go see your GP if you have an issue I cannot stress this enough.

     

    much love everyone 

  • Hi SJl85, been thinking of you & hoping you managed to get everything cleared up with a positive outcome. 
    what a year this has been. 
    wishing you a happy & healthy Christmas and new year x

     

  • Hi CGZ

    hope you managed to get sorted with a positive outcome. I'm finally starting to feel back to my normal self the last week or so. The virus really did floor me & for such a long time. 
    as for the tonsillectomy, I feel as though the result gave me complete peace of mind following my initial consultation & the concerns raised about the size/being assymetric so it's worth considering IMO. 
    My more recent worries were drew more on my symptoms & knowing there wasn't a tonsil there to be causing issues. 
    pleased to say following a hugely stressful couple of months that all is well & I really hope the same goes for everyone else who has been kind enough to support each other on here x

     

     

     

  • I know that you posted this a long time ago, but I have similar issues! I have 2 small swollen lymph nodes on my neck 2 under my jaw and one in my groin. Doctor said I'm fine did blood tests and all clear. I have stopped taking my contraceptive pill, I am taking multi Vitamins. I have a wisdom tooth coming down which is very painful and giving me headaches and jaw pain which is probably cause for the two that are swollen under my jaw, considering the bigger one is on the side of my jaw that the wisdom tooth is on. I had an abscess and got a root canal a few months ago so my immune system could just be tired from that. I am not experiencing night sweats or anything really only occasionally some digestive issues but I'm lactose intolerant so that's probably where that's coming from. I became worried when I found the first one because my neighbour found a lump on his neck and was diagnosed with lymphoma and he's only a few years older than me, completely healthy apart from the lump. He is finished treatment after only 3 months I think and is perfectly fine! I'm glad my doctor was so calm about it and took my bloods on my first visit, he actually took me a 17 year old girl seriously! But hopefully they'll all go back to normal now that I've stopped taking my pill! I just realised they've only been up since we got cats! Maybe I'm allergic to them or something, even if I am we're keeping them i dont care! Thanks for anyone that reads this and thank you everyone for putting my mind at ease!! :)

  • Oh this post has made me feel so much better!

    About a year ago, there was a small kidney shaped lump under my jawline and the doctor said it wasn't anything to worry about. Since then I've had multiple lumps come and go, all at common nodes points. I rang the doc back a few weeks ago to say the main one was enlarged (different doc) and she referred me for an ultrasound. Normal blood test came back normal. Went back for a hormones test on Friday (awaiting results) and awaiting ultrasound appointment  which should come through soon. Night sweats have been common and feeling so tired but lockdown and back to routine could be a factor in this. I visited the dentist also  4 weeks ago, as I had a root canal done last year which had a large infection and it was playing up. He said it wasn't typically in line with drainage from the tooth (where the nodules were) however he gave me an antibiotic for the swelling in the tooth and this made the lump go much smaller agaiin (coincidence maybe or related?) 
     

    I'll stay off doctor google and update once ultrasound is completed. I'll feel much better when that's all done and hopefully clear x