My son contracted meningitis when he was 6. Following this a rash appeared and a couple of years later he was under a dermatologist with a suspicion of MF. He is now 19, he still has regular biopsies and these always comes back suspicion of….
Today, we have been told this is a grade 1 T-Cell Lymphoma
I have read so much over the years. He is a typical teen who has no interest in what is happening or could happen. There appears to still be no definite diagnosis and I do understand that it difficult to pinpoint but it was still a shock to hear the words grade 1..
Any advice…
Hi and welcome to our little corner of the community - first sorry for not getting back to you sooner but I did not receive a notification about your post.
I am Mike Thehighlander abd I help out around our blood cancer groups. I was actually diagnosed back in 1999 with Mycosis Fungodes (MF) as a Dermatologist will call it but a Haematologist will call it Cutaneous T-Cell Non Hodgkin’s Lymphoma (Skin Lymphoma) (CTCL) MF basically comes under the banner of CTCLs.
CTCL is indeed a low grade, slow growing incurable but treatable type of NHL that people can live most of their life with very little treatment but some like myself required more demanding treatments.
The most famous person I have heard of with CTCL was Murray Walker of F1 fame and he got to 98 with very little treatments.
If you look at my story (hit my name) it took a full year, a few CTs and 6 biopsies to get a final diagnosis. My Dermatologist said that some folks can be tested for years before they get a clear hit in the bad cells.
I went through all the stages (you may be getting confused between the term grade and stage) from stage 1 up to stage 4a when I had 70% skin coverage, bone marrow and lymph-node involvement.
It is very important to understand that unlike solid tumour cancers like breast, lung, kidney.... where the stage numbers are a big deal as they often set a prognosis..... but in blood cancers, yes CTCL is a cancer in the blood, stage numbers are mainly used to highlight where the cancer is presenting and what type and amount of treatment is required...... not a prognosis.
You will have lots of questions so do get back to me with them but a few questions for you.
Has he had any treatment and if so what?
At what hospital is he doing seen at?
