Is Cutaneous T-Cell Lymphoma a Death Sentence?
Hi, I’m 61 years old. Not 100% diagnosed yet. They still have to do a genetic organization test. But biopsy came back with elevated white blood cells and lymphatic infiltrates.
My red patch is in my groin area on the right side about the size of a small 5” pancake. It is red but faint, not raised, a little shiny, but no itching or cracking. No night sweats, no fever, no cuts or bleeding. Not presenting as advanced. Dermatologist is unsure and sending me to oncologist. I’m seeing “5 years to live” all over the internet and it’s scaring me to death. I just got the news today. While it’s not definite should I be worried about a short timeline? Can the biopsy showing elevated t-cells not necessarily be cancerous? If they are cancerous, what is my life expectancy. I do have a pre-existing lung disease/immune related, that has been in remission for 11 years. I’m healthy with perfect weight for my height, workout and run 3.5 miles daily. Drink only one light alcoholic drink per week. Do not smoke. I’ve only had this red patch for seven weeks. Please help provide some information if you can. Thanks, Paul
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So my original biopsy was inconclusive, but strongly suggestive of CTCL. My regular dermatologist really leaned in that direction, gave me handout, highlighting, large plaque, etc. Fortunately, I did some research and found out that university of Virginia, 70 miles from me, had two experts in the field., and oncologist, and a dermatologist. They had their expert pathologist reread my original slides and between that and reviewing my case they were able to rule out CTCL.
I feel lucky but upset my dermatologist made such a bad call. She never suggested another opinion, lesson learned, take care of yourself
Thanks for reaching out. Wish everyone was as lucky as me.
Hi
I have been diagnosed with Primary Cutaneous extranodal Marginal Zone B-Cell nonhodgins Lymphoma CBCL because of a biopsy. Does anyone else have this diagnosis?
I have been informed it is extremely rare and only 1 person in 3 million have it. I don’t know of anyone else who has exactly this?
Would anyone else who has this? Please contact me
Thanks