Hi, my son has been diagnosed with possible T Cell lymphoma. It has been a long journey for 6 years.
He first was seen by hematology for enlarged lymph nodes. He had several very large lymph nodes taken from the groin and under arm . He has small lymph nodes up everywhere. The biopsies came back as showing reactive. He has had every test going from many consultants in different departments.
He has got slowly worse as time has gone on. His deep lymph nodes on both sides of groin and under arms have grown to the size of golf balls and clearly visible.( They have replaced the ones he has had taken out)He has had night sweats all along but now they are every night and sometimes he is dripping wet and has to shower in the middle of the night. He has deep bone pain and fatigue. His skin has a unexplained red bumpy rash that doesn't itch . Also his skin can break open and bleed (just tiny pricks or like a paper cut)
All the consultants from hematology and immunology got together and are convinced he has a slow progressing cancer. Though skin biopsies twice showed reactive like his lymph nodes they are sure he has T cell lymphoma or differential diagnosis of a tumour somewhere.
They are going to take a considerable amount of skin biopsies within the next week or so to try and find it. They said it could be hiding in the deeper layers of his skin He is desperate for treatment now. They must be sure as a mcmillian nurse was there and the consultant expressed their sorrow when telling us .
Does any of this sound familiar? Any advice would be appreciated.
Hi Daisy and warm welcome to this corner of the Community although sorry that you had to find us and especially sorry to hear about your Son's possible T-Cell Lymphoma diagnosis.
I am Mike Thehighlander and I help out around our Lymphoma groups. I was diagnosed back in 1999 with a rare Low Grade T-Cell Non Hodgkin’s Lymphoma (NHL) so have been on this journey rather a long time.
This is a challenging time you all have been having and unfortunately your son's journey is very familiar as some types of NHL - especially T-Cell NHLs can be hard to diagnose.
You can hit my community name to see my story....... but back in 1999 into 2000 both my amazing GP then my very experienced Dermatologist took about 20 months between them plus 6 biopsies and a few scans to actually get a clear diagnosis for my rare type of T-Cell......... even although my Dermatologist was 99% convinced from day one as to me having Cutaneous T-Cell NHL (Mycosis Fungodes) (CTCL)
It took over 14 years before my condition showed up in my Lymph-nodes but it was 'in' my skin all those early years and was receiving regular treatment for it.
Good information is important so have a look at this T-Cell information from the Lymphoma Actions website.
Skin T-Cell Lymphomas can be hard to diagnose at the best of times. Where (what hospital) is he being seen at?...... Is it a cancer specific Hospital?...... I ask this as there are a number of experts around the UK who know this condition well.
The encouraging this is that his clinical team are actively looking for answers........ so lets look for this to happen soon.
Always around to chat.
Thank you so much Mike for your reply.
We are in West Yorkshire. He has seen 4 different dermatologists in 3 hospitals( pinderfields /St James in Leeds and another in Leeds I can't remember). 3 of these suspected T cell lymphoma....this was after his first heamatologst had done several lymph node biopsies that came back reactive.
After that he was sent to infectious diseases in Leeds and then another department for carcinoid. All tests were negative. He has been tested for everything including HIV but all negative He was under immunology at St James in Leeds for 4 years now. They have done all tests but nothing. They even tried him on steroids but didn't work. He also had inflammation tests that are advanced but no inflammation found. Which we have struggled to understand as we were told reactive means inflammation.
He is now at Pontefract hospital under hematology. His original dermatologist will be doing more skin biopsies taking them from all over his body. We were told it could be hidden deep underneath. We feel a little more confident with the consultants he is under now.
All the consultants say it can't be anything else other than cancer with his symptoms and clinical signs. My son is just worried that the biopsies will come back reactive again. They have said that a differential diagnosis would be a tumour hidden somewhere that they can't find.
All this has really taken it out of him . He has extreme anxiety and mental health issues. After 6 years is health has declined significantly. He is 33 tomorrow by the way. He just desperately needs treatment before it's too late. It's heartbreaking to watch a once very active, outgoing strapping man reduced to how he is now .
It’s hard to see this but it’s all about keeping on keeping on to get answers and the more consultants big the closer to answers you will get.
Professor Sean Whittaker. Professor of Cutaneous Oncology at Guy’s and St Thomas’ London is the UKs top Consultant on Skin Lymphomas and indeed he was involved in recommending the treatment journey I went on.
Do have a look through the information that you can find on the Lymphoma Action Site as there is lots that can help you understand this.
Always around to chat and help.
Thank you for the information. Just been reading your story, you have certainly been through it all but so happy to know you are in remission and doing well.
I do want to ask next time for a bone marrow biopsy. His bloods did show adolescent white blood cells but no one has said much about this. We have also thought maybe a low grade leukemia.
Many thanks again and will keep you updated