Hello everyone. I am very grateful to find this space especially in moments like this where you feel incredibly lost and confused.
My husband ( he’s only 42) developed a few marks on his left leg in February 2023 which were red a first, then turned a bit darker colour, he went to a dermatologist at the time who prescribed some sort of steroid cream which actually made the marks better, by summer the marks were hardly noticeable. There were about 5 marks. By September the same marks returned and new ones appeared so he visited two more dermatologists who had no idea what they were. The last dermatologist suggested it was schamberg disease but asked for a biopsy to be sure in late December. Results came back last week with sort of an inconclusive result, ruling out schamberg disease and with suspicious MF because of the high T cells. He has been sent to hospital for another 2 biopsies. Waiting for him to be admitted to hospital at the end of February. He has no itchiness or any other symptoms.
We are really shocked and confused about all of this and my husband is in a very bad state of mind waiting for answers. I have spent the last few days trying to understand and study this condition as much as I can but emotions and fear are very strong so it’s really a difficult time.
We are based in Poland at the moment and I don’t really know yet how this condition is treated here but we used to live in London for 20 years so it’s really easy for us to travel there or even relocate back there. I have made an appointment with Professor Sean Whittaker who I know is the best person to see about this condition in the UK and we are seeing him in 2 weeks time. He is also having tests done in Poland and seeing a dermatologist here but we obviously want to get as many opinions as possible from experts.
I guess I am here to first open up about this as it’s extremely overwhelming and it’s so important to have a space like this to speak out but also to ask for advice at this stage.
I know this is a very rare type of cancer which makes it harder to believe he may have it?! What are the chances this is MF if a biopsy result comes back only as suspicious? Any other reasons why T cells might be elevated? any advice on questions to ask to Professor Whittaker so we are prepared and if there’s anything I can do for my dear husband at this moment?
Thank you so much for reading this far, sorry for the long post and so many questions and I really appreciate in advance your replies.
Hi BWAC and a warm welcome to this corner of the Community although I am sorry to see you joing us and to hear about your husband.
I am Mike and I help out around our various Lymphoma groups. I was diagnosed way back in 1999 at 43 with my Mycosis Fungoides (MF) eventually reaching Stage 4a in late 2013 so I do appreciate the challenges of this journey rather well.
MF fits into the Cutaneous T-Cell Lymphomas group of Lymphomas. On the whole these are seen as incurable but very treatable......... so think it to be like a chronic health condition.
Over the years I have talked with many people on here and through Lymphoma Action who like myself, were able to live normal-ish lives.
For the first 12 years until I retired at 55 I was teaching in a very demanding job on a full timetable but was able to fit in treatments and appointments around my job.
MF normally takes a long time to develop see your husband will have to look at this as a marathon not a sprint.
There are many levels of treatment from simple creams up to full on treatment....... but few people get to the stage of having full on treatments...... unfortunately I was one of the few.............. but I am now over 8 years out from my last treatment, my skin is perfect and living as good a life as any 68 year old can live.
Great that you are seeing Professor Whittaker and his team. Although I have never meet him, he reviewed my case and recommended various treatment options and got me where I am today.
I know this is a very rare type of cancer which makes it harder to believe he may have it?! What are the chances this is MF if a biopsy result comes back only as suspicious?
Yes MF is 7 in a million rare.... and be prepared for the biopsies not to be conclusive....... It took my very experienced Dermatologist a full year and 6 biopsies to get the pathology to tell the truth.
As for questions....... all you need to do is trust Professor Whittaker and his team...... they are at the top of their game and will be very clear as to what they find, or need to do further to get a clear diagnosis and where treatment should go........ all you need to do is be the note taker and the second pair of ears.......... but ensure that you don't leave without getting clarification on any information that is given that you don't understand.
As you would imagine, the group is not going to be busy with folks with MF..... but I am always around to help out as best as I can.
You can see my full story using the link at the bottom......... but do remember that I am one of the small number who have to good to the enth-degree to get the condition under control...... people like Sir Murray Walker of F1 fame lived to 97 with little or no treatment and B. A. Baracus aka Mr T in the original A Team is still living a great life.
((hugs))
Back in 1999 when I was officially diagnosed.... although I had been living with it for a number of years....... My Dermatologist did not tell me I had Lymphoma - he just called it Para - Psoriasis and I have family who have Psoriasis and I had seen them get on with life.
So I did get on with life and thought nothing about it........ I found out by mistake a few years later about my true diagnosis...... my next appointment with my consultant was interesting..... but my consultants words rang in my ears for good number of years.
"Have been stressed and concerned over the past few years?"......... well I had to answer no... so he then said " well continue to do this and if things change we will take care of it"
Before Christmas another patient and myself did a Podcast about living with MF.... you can listen to it through this link Don't walk the journey by yourself - Mike and Kasia
I am just going out for the night…… but Stress does not help MF…… reducing stress will go a long way to help slow down MF progression.
