Confusing lymphoma

Hi everyone sorry to disturb,

I want to talk about my so called lymphoma journey around July/august 2021 I noticed a painless lump on my neck I did have couple of symptoms but brushed it off but I notice a lump I went to the GP and they checked it was like 4cm didn't have symptoms at the time however they referred me to the hematology oncology and I did bloods in the GP which came back abnormal high lymphocytes high red blood cell High white cell so long story short it was worrying after I was feeling ill night sweats headaches those were around the time of my blood test results and the hematology ordered a biopsy which was on my right cervical node not on the left cervical node which had the swelling but the hematology registrar said both looked swollen but the right one not too much so I did the biopsy and it came as nodular predominant Hodgkin lymphoma  after being ebv positive it triggered it and got referred to another hematology center and then did bloods and pet scan showing stage 2 this was all fine however, this is when it got confusing I was meant to to start chemo and I read the reports it's keeps saying features suggestive however I thought I had a clear diagnosis as everything was getting set the chemo pet scan showing stage 2 and everything only when I read reports it said "suggestive" but the doctors was so sure anyways, the hematology registrar wanted to do another biopsy to check the subtybe to be really sure but they said 99 percent sure it's lymphoma so I did the biopsy again on the right side and it came back as npn diagnostic and then they did an excision biopsy on a really small node on the left side which I had my whole life now which is saying I don't have cancer features suggestive of dermatopathic lymphadenitis and in reports it keeps saying to keep an open mind like I can be cancer since I still have the lump on my left node which they never checked so now I'm in a position which I don't know if I do have it yes I might not have it at the moment but I have to keep an open mind and another doctor saying if nodular predominant Hodgkin lymphoma was on right cervical node why don't they check that again and plus on my pet scan it showed both lymph nodes affected but the excision biopsy was on a really bottom lymph node which wasn't shown affected on pet scan so I am so confused even the doctor confused I'm not sure what to do lol I am just living without any thought about it but I feel like I've been played once I do definitely have it now I don't keep an open mind and I'm getting appointments so late like once every months possibly because I don't have symptoms.

Does anyone think I should have second opinion 

  • Hi, 

    So sorry to hear you're having this problem. I think it would be safe to get a second opinion. I have the same problem lump in my neck above my collar bone which is painless however i've just recently noticed I have dark coloured stools. The lumps appeared after I had covid and haven't really went down and are only getting bigger. Had a full blood count which tests came back borderline (they didn't tell me borderline for what), waiting to get them done again in a month. Waiting is so hard when you know something is not right in your body. Just hang in there. 

  • Offline in reply to AM.

    Yeah exactly not knowing is the problem and the waiting I'm not sure maybe covid could have triggered the cancer cells like my ebv positive however, don't worry for them to be sure you will probably need a biopsy hopefully it is not cancer. Just be positive you got this. 

    I just feel annoyed everything was confirm I took a gap year of university now I can't even go back this year.

    Oh yeah sorry about my grammar I wrote the forum late