Hi, hope it is alright to use my name. Mike. OK, I was diagnosed with mycosis fungoids about 3 months go. I had a really nasty painful large tumour which was treated successfully with radio therapy. Anyway my problem is that living in Wales there are no specialist centres for my cancer. The dermatologist I saw after my radio therapy took about 5 minutes to examine me, staged me at 1a and gave me some creams. Then onto an haematologist that admitted he new very little about the type of cancer and suggested he referred me to Guys hospital in London. I will have to pay for the consultation. So my question is, has anyone else been through this, and I have also looked up another centre in New Castle.
Hi again Mike NHL me first the best place on the Community to talk with people (like myself) who understand mycosis fungoids (MF) is in our dedicated T-cell lymphomas support group…. The New to Community area is basically like the Community reception area.
MF fits into the small group of Lymohomas called Cutaneous T-Cell Lymphoma (Skin Lymphomas) (CTCL)….
MF is 8 in a million rare and most Dermatologists and even less Haematologist will have never see someone with the condition….
Back in 1999 when I was first diagnosed with my MF my then Dermatologists had experience in dealing with this so I got good treatment from day one.
If you click on the link below it will take you to the Lymphoma Action site where the link highlights where the main MF centres are in the UK…..
https://lymphoma-action.org.uk/find-ctcl-treatment-centre
Professor Sean Whittaker - consultant dermatologist and his team at Guys and St Thomas' in London are seen as the top centre for MF….
Back in 2015 when my MF and my new PTCL-NOS became a problem and I had relapsed following my first Allo (donor) Stem Cell Transplant - this was done through the Beatson in Glasgow.
So my Glasgow team sent my case for review by Professor Sean Whittaker and his team….. my Health Trust (Inverness) was going to pay for me to fly down to see him….. including covering all the costs but Professor Sean Whittaker was able to make recommendations based on my notes, scans etc and this set the foundations for my ongoing treatment.
My Health Trust also paid for me to go down to Newcastle to the Freeman Hospital where is was assessed for having a specific treatment the would help my second Allo (donor) Stem Cell Transplant but the consultant recommended 30 sessions of Radiotherapy and this was done back in Glasgow at The Beatson just before my Stem Cell Transplant in Oct 2015
You need to challenge your local Health Beard that if they are unsure how to treat you they have to referral to a place that can and cover the costs.
Lymphoma Action have a Lymphoma helpline on 0808 808 5555 open every week day from 10 till 3. This is a safe place to talk stuff through and get support.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same MF journey…… I actually am a MF Buddy for them.
Lymphoma Action run regular Support Platforms..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey….. and they do have 2 specific zoom groups dealing with Skin Lymphomas.
Happy to chat more…..
