Hubby had dermatology appt out the blue (15months since last appt thought he was discharged!) so we went wondering what this was! Tiny room lots of people not introduced! We knew 1 person consultant we saw during diagnosis NHL skin lymphoma! Query at time rare type so sample sent far & wide- 4 months after initial diagnosis had radiotherapy! All gone we thought! Nowhere along this road were we told type, etc despite asking! We waited an hour and in out in minutes! He felt like an exhibit- consultant we knew said his name, asked how he was, no new issues? That was it! Bye! I gather he may be a rare case, they wanted to see him to put face to case! Probably a research paper with his case on somewhere! Angry doesnt cover it! I was so stunned as how quick in out!!
Hi Pastyum I don’t normally post in this group but as you may remember I was diagnosed with my rare (8 in a million) hard to treat, incurable type of slow growing Low-Grade NHLs - Cutaneous T-Cell (Mycosis Fungodes)…..
14 years ago I was sitting in front of 60+ Scottish Dermatologists with the basic question posed to them - “What type of skin condition does this patient have?…”….. only 4 of the 60 got it correct !!!!
I am not surprised that there was such a long period of time to get that clear diagnosis…… back in 1999/2000 it took a full year and 6 biopsies…… sent ti various testing facilities to get the pathology to tell the truth.
T-Cell NHL is in the rare side but we have a few folks with skin NHLs over in our dedicated T-cell lymphomas support group.
