Lymphoma diagnosis - now not sure!

Hi everyone, 

 

I have a very strange and confusing story and just wanted to reach out and see if im the only one..

 

This is a long story but i will try and be brief...

 

So, i had felt this dull ache in my armpit for a few days that id never felt before. I was in Lidl grabbing some bargins around a month or two ago and i suddenly the pain became unbearable. I shortly became very very unwell. I was driven home by friend and i dont remember a single thing. Next day an ambulance came to collect me i had a tempreture of 42' and my right breast had swollen up to the size of a small football :shocked: i was very sad and scared. Because of Covid i stayed in hospital all alone and it was terrifying. I was scanned as my breast was very lumpy and there was alot of concern surronding breat cancer. i was in hospital for over a week with an IV, they tried 3 different antibiotics before the swelling went down. 

 

skip about 2/3 weeks i attended the Breast Clinic at the hospital to check up on my breast. By this point my other armpit was now feeling really painful, i have started having sporadic night sweats (they are not progressive and were their worst when i first came out of hospital) , i have lost weight (but i have an eating disorder so i can't say for sure it is unintentional) i am so exhausted constantly (but im on antidepressents so it could be down to them) i feel achy like ive been working out at the gym (i havent hehe). I was examined and the consultant said there was no evdience of breast cancer at all. She wanted me to have an ultra sound as i complained about the left armpit pain. During the scan, they requested to take a biopsy of my lymph-node as it was larger and thicker than it should be. 

 

I was called back into the breast clinic and the consultant pushed a box of tissues towards me and broke the news that they have founbd High-grade T-cell lymphoma in my biopsy. I was shocked and devestated about this, i am only 23 years old, just started a new job and the only thing i like about myself is my really really long thick hair - my world felt like it was closing in around me :sad: The consultant explained that she is a Breast Cancer specialist and will be transferring me to the haematology Department for my chemo etc.

 

The next day i get a phone call from a nurse at the haematology Department explaining that my sample is being rechecked as they are not sure on the diaognosis. Apprently, particular virus' can mimic a T-Cell Lymphoma and the type i have been diapognised with is highly rare. A few days pass and i recieved a letter confirming my diagnosis of lymphoma. BUT THEN.. i get a call to say the haematologists cannot confirm or deny the lymphoma from my biospy and they sending it off to the Royal Marsden. 

 

I received a call from the consultant who asked me to come in for a CT scan next week and potential full removal of the lymph-node. But *in my opinion* the consultants tone of voice seemed very much as though he didnt think i had cancer. They tested my blood for loads of diffferent virus' which all came back negitive.. but when i asked if that pushes him closer to thinking it is lymphoma he said no. 

 

Has anyone else had this much difficulty around being diagnosed?

I cant beleive day by day im being told, yes cancer, maybe cancer, yes cancer, not sure about the cancer over and over.. my mental health is drained and I feel gulity telling my mum about it and putting her through so much pain for no reason. 

If there is anyone who has High-grade T-cell lymphoma who could talk to me about their experience i would be so grateful 

 

lots of love x

  • Hi

    I read your post and by your symptoms it sound like an infection. I have a rare type of Lymphoma (NLPHL) which at the beginning was hard to diagnose. Having said that it was in 1979 when the health sevice did not have the advanced medical equipment they have today. What makes me think its an infection is the pain and swelling. The antibiotics seemed to clear the swelling. When I first noticed my lump, which was in the armpit too. It was painless and could easily be over looked. I was having minor illnesses but nothing to cause concern. The first biopsy was unclear but almost immediately after there was a cluster of nodes which were also removed. These were also painless. It was only then that they decided it was lymphoma. I had no other sympton and I felt well.

     

    Because my disease is Nodular lymphocyte-predominant Hodgkins lymphoma (NLPHL) its not curable. Each relapse there is no pain. In fact they tell me I am relapsing, Last time it was picked up as an incidental of another condition and it was at stage 3. I had a PET scan last month to be told that there are signs of another relapse. Again there is no pain or swelling. There are no B simptons either. The T cells are the immune response to an infection. If your doctors say there is nothing to worry about then take their advice. Having said that do keep checking yourself and any signs of abnormality go to the doctor.

     

    I do totally understand how you feel. It's not nice living with uncertainty. I have been living with mine to 40+ years now and it plays on your mind. I like you was in my early 20s when I was diagnoed and it comes a bombshell.

     

    I hope this has been of some help and feel free to ask me any questions. Try not to worry too much I an sure it will be OK.

     

    Love