Worried about lymphoma

Hi guys! I'm new to this forum so I hope I've posted this in the right place! 

Basically I've been to the doctors regularly for the past five or six months desperately trying to figure out why I feel so crap. It began with tiredness and aches  as if I was at the end of a virus and I just couldn't shake it. Since then it's gotten progressively worse and now my once productive and active lifestyle has completely gone and I can barely function day to day with exhaustion. I've had numerous blood tests which are all fine apart from iron deficiency, I've had a colonoscopy and endoscopy In case the iron deficiency and aches were caused by inflammatory bowel disease but they were clear. I also had a CT scan which was clear.

I mentioned to my doctor that the lymph nodes on either side of my neck (the two main ones I don't know what they're called), have been slightly swollen since glandular fever four or five years ago which I assumed was normal, but in the last six months they've been significantly more raised. They seem to flare up and go back down, never smaller than maybe the size of a large grape. I also have a slightly smaller harder lymph node on the back of my neck and a small hard one on my jaw line. My doctor arranged a neck ultrasound for the following day, and the radiologist doctor  was really dismissive. The radiologist did the ultrasound and then went to get the doctor who came in and did it again, he then said something along the line so of "we could do am FNA or just leave it and see if they go down they seem reactive and they haven't become larger recently" ignoring the fact I said that they had gotten larger recently.

i went back to my GP who said that whilst the Doctor has assumed they'd be reactive, she felt that since they have been noticeably larger for the last six months and the two largest are almost 3cm long she'd rather I'd have an FNA just to be sure. We've been working to find what I feel so exhausted and weak and it's getting really bad and completely interrupting my life as a stay at home mum All other tests have shown nothing and I'm starting to lose hope, but I'm really scared it could be lymphoma. Apart from the lymph nodes and exhaustion I've also had a lot of random aches and pains, especially lower back pain when I lay down, and some itching on my arms and chest with no rash and seemingly no reason. I'm not sure if I've had any weight loss since I've been eaten less and exercise to deliberately lose weight so I wouldn't know. Ive got an FNA on Monday and I'm so scared!

anybody been in a similar situation? Thanks guys!

  • Hi Meg,

    I thought I was losing my mind until I read your post.

    I have all the same symptoms with the addition of a white egg shape lump with spider veins on my left tonsil and a cough with a sore throat for months but figured it was from being a smoker.   I have not had some of the tests you have but because my mom has stage 4 aggressive non-hodgkin lymphoma and my Uncle past away from thyroid cancer that my doctor has sent a referral to an ENT doctor which I see Nov 8th, which is also my birthday.   the lump between my ear and jaw seems to be getting bigger and painful.  I think the only way to get thru this is to stay strong and positive.  

     

    I would like to stay in touch with you if that's ok.

  • im so sorry about your mum and uncle that's awful! Hopefully we'll both be fine but im glad it's not just me it's such a scary lonely time, I just desperately want an answer so I know I'm not crazy and imagining all of these symptoms! Fingers crossed for both of us it's something much nicer than the C word. Of course!
  • Fingers crossed.  I will keep you posted.

  • Hi Meg96, unfortunately I am currently under going tests for lymphoma.

    i've had a core neddle biopsy, 2 CT scans, a PET scan & just Thursday a procedure to remove lymph nodes from my neck & lung under general anaesthetic.

    i had no classic symptoms of lymphoma what so ever, no night sweats, fevers, itching, fatigue- just a heavy feeling in my throat since June. I finally got an ultrasound in September & since then my world has been turned upside down.

    over a month later, we still don't have a proper diagnosis- I never imagined it would take quite so long. The waiting is crippling me, I'm a shadow of my former self, & I fear I have depression now. 

    Just push & push to get tests done, realise that diagnosis isn't quick (so your hopes aren't up), and look after yourself.

    please keep us updated if you can, thinking of you & sending you strength x

  • Thanks so much for your kind words, and I'm so sorry about the horrible position you're in too :(

    its so horrible waiting, not wanting something awful but also wanting to know what is wrong with you so you don't feel like a crazy person! I feel as if my family all think I'm a massive hypochondriac and imaging im always sick, since every test is always negative! Lymphoma is the only thing I can possibly thing of that would make sense for me!

    how did your biopsy go? I'm having a fine needle aspiration and I've heard there's a lot of false negatives, so I'm not sure whether to push for more tests if this shows negative! 

    sending you strength too, keep me updated good luck!

  • The core neddle biopsy I had came back inconclusive, so I now have had the whole lymph node taken away- it was under general anaesthetic, which I was petrified about- but j wouldn't be again, it was fine.

    my wound across my neck is just tight & making movements restrictive- which isn't helping me mentally not get too anxious as all I can do is lie about.

    'i also had a lymph node removed from my lung- which is actually hurting the most internally.

    ive been told we are looking at it being either lymphoma or sarcoidosis now. Just got to wait for the results, but the wait it killing me. I've never felt so depressed xx

  • I'm sorry, that sounds awful! The waiting is horrible isn't it, the more I sit and wait for appointments the more I imagine the worst scenario. Id rather be given bad news right now than wait weeks for it, at least with a diagnosis you can have a plan on how to start getting better and get things moving forward! Fingers crossed my FNA comes back clear, waiting all week for the results is going to be a killer :'(
  • I’m in a similar situation - I’ve got my first appointment with haematology next week for suspected lymphoma. GP did urgent referral a couple of weeks ago. Hate not knowing. Hope your results come back soon and are all fine x
  • I'm sorry that you're in the same situation! Fingers crossed your appointment goes well, i may be getting my biopsy results the same day so il be sending positive thoughts to you! Keep us posted xx

  • Hi Meg

    Just found out my ENT appointment has been moved up from Nov 8th to this Friday oct 27th Praying for positive news.