Hi there,
I hope this is in the right area of the forum.
A few weeks ago I was told I have CTCL - MF
I understand this is a rare condition but not only that it usually appears around 40+ years old, I'm only 30 which is why I'm struggling even more I think.
I had a biopsy taken from a rash on my arm, the results of this were "worrying" according to the dermatologist and diagnoses such as interface dermatitis, drug reaction or even a type of cancer called mycosis fungoides need to be considered, so he referred me to hospital. When I got there she asked me a bunch of question, if I take any drugs, if I notice they flare up after coming into contact with anything etc. All of which the answers were no. I have had some of these rashes since I was 19-20 and found no pattern to flare ups and was already using stuff targeted at people with dry skin problems. So she asked me to show her the extent of the problem, by this point I have patches all around my bottom, tops of my legs, shoulders and 1 on my forearm. After looking at me and reading the biopsy report she immediately said unfortunately this is a type of cancer called MF, most of what was said afterwards I don't remember to be honest, its all a blur and due to Covid no one was allowed to attend with me.
So fast forward nearly a week, after the MDT meeting at the hospital the experts have requested extra biopsy's to get a formal diagnosis.
This has left me super confused, the doctor has confirmed to me face to face I have MF. I have since spoken to the skin cancer specialist who gave me information about the cancer etc and been waitlisted for UV treatment. The first letter I got was a copy from one sent to my GP saying "Diagnosis/Problem - Mycosis Fungoides" now I have another letter saying my biopsy and clinical examination are highly suggestive of MF but they need more biopsy's for a formal diagnosis.
Why would they tell me I have cancer, then my follow up appointment basically say they are unsure. Surely you should be 100% sure before telling someone that.
My next confusing matter is this second lockdown, from the government guidance it states:
I discussed this with the skin cancer nurse before the lockdown and she said shielding isn't being reimplemented so I should be fine to attend work, I am a train driver working for TFL I went back to work however on Friday a manager called me and said according to government guidance he believes I shouldn't be attending work. As I have been recently diagnosed I doubt I would have been added to the shielding list yet, should I be chasing the hospital to confirm?
Sorry for the long post, thanks for your time.
John
Hi John and welcome to our little corner of the Macmillan Community and indeed to the rather exclusive Skin T-Cell club.
I was diagnosed with CTCL (Mycosis Fungoides) way back in 1999 when I was 44 but I have talked with others who were in their 30s so you are not alone.
CTCL is very difficult to diagnose and even once they 'think' they have pinpointed it consultants will often do more test just to double check as there are a few skin NHLs...... it took 12 months for me to get my 100% diagnosis for CTCL.
You will see (hit my Community name Thehighlander) that I lived and worked for about 14 years before we had to use full on treatments.
CTCL - Mycosis Fungoides (LINK) is a low grade, slow growing type of NHL. Unfortunately it falls in the group of NHLs that are not curable but are very treatable and people can live a long and happy life with it.
There are now many stages of treatment and I am pleased to say that not many people will embark on the same journey I had....... but I am now 4 years in remission.
You do need to talk with your consultants about what you should be doing during these challenging times as this is an unusual type of blood cancer and indeed may only live in your skin and not show up in your blood, Bone Marrow or Lymph-nodes.
Have they said if you are going to have a CT Scan as this is a normal part of the diagnosis stage?
Happy to talk more and answer any questions you have.
Corticosteroid creams will be first line and did well for me for a few years.
UVB wil often be added then moving onto PUVA..... then there are other routes that can be taken.
You will find your skin will go in cycles and this will dictate how often you will have treatments and what type.
Professor Sean Whittaker at Guy's and St Thomas in London is the UK leading expert in CTCL and my case was sent for review to him and he advised the best way forward soups for him.
Yes, this is a Blood Cancer NOT a Skin Cancer and this CAN NOT be cut out.
In the early days it will be treated like very bad Psoriasis and treatment will be escalated in direct relation to how your presentation develops but as you see from my story this can take years.
Yes this develops when our T-cells (also called T-lymphocytes) become abnormal. T-cells are indeed white blood cells that fight infection and are part of our immune system. Does it make you more open to infection, let alone COVID I actually don't know?..... as I never had an infection of any type during my first 14 years - so do talk this one through with your team as you do need some professional guidance in these times.
Due to my treatment journey I am classed as extremely vulnerable as my Stem Cell Transplants have effected my immune system permanently so I have to be very carful but at the same time we are not locking ourselves inside.
Yes this sounds so familiar, remember it took my team a full year and 6 biopsies to get the truth.
Great news you are being referred to Professor Sean Whittaker and his team at Guy's and St Thomas.
No, your doctor is doing the best thing. When you have no real experience in an area you refer on.
Some creams can actually do longer term damage to the skin when wrongly used and when they are not sure the best way is to stop, let the skin recover and yes, let the MF develop a touch so it can be properly assessed.
Please do remember that 99% of the time people will only have regular skin treatments and never go on the full on treatment journey and it took me 14 years for the condition to become aggressive.
This might sound rather simplistic but no matter how much stress and worry you throw at this it won’t change what you will be eventually told....... but stress and worry WILL have a negative effect on you skin and in how you get through this.
Take a breath, this is a very slow growing type of NHL and is very treatable.
Hi again, great that you have made progress and if Dr Whittaker thinks it’s MF he is the one to know.
I started on UVB treatment for about 4 years moving onto PUVA for a further 4 years and this all worked well on my skin for a good before we had to move on to stronger treatments.
Remember that this is a low grade, slow growing type of Lymphoma and very many folks only do need UV treatments.
Hi again LittleTike yes there may well be some more tests to do. Have you had a CT scan done? as this will confirm if there is any lymph node involvement and results in a grading. But do remember that when it comes to blood cancers like MF the higher the grade is not a bad prognosis unlike sold tumour cancers like breast, lung.... it’s just a signpost as to where in the body there is cancer cells and what treatment, if any is needed. I reached the giddy heights of grade 4a and it made no real difference for a good few years before things became more aggressive.
If you have MF and as your first biopsies say this your team at the Christie (excellent hospital) are double checking as there are other skin conditions that mimic MF so they are just being carful.
So at this point in time you need to ride the diagnosis waves until things are firmed up by your team and a clear way forward is it on paper.
MF is very treatable and your prognosis will be good living a long life but having regular treatments. I worked and lived a normal life for 14 years before I had to have big gun ‘cancer’ treatments, it was more life living with bad Psoriasis.
One of the celebrities that lived with MF for most of his life was Murray Walker of F1 fame and he died at 98 not because of MF - just old age.
I would hazard a guess and say you are very stressed at the moment and from my pint of view that will be the source of most of your fatigue. This will reduce once you find out more and a plan is put in place.
Have you had any treatments like creams or light treatments?
how did your handle it and can anyone offer any advice.
My advice is you can not control the medical side, it just happens and you put your trust in your medical professionals to do the very best for you..... you on the other hand have to control the whirlwind between your ears as stress and anxiety can be debilitating and you will be majorly fatigued.
My Dermatologist told me the normal skin growth cycle is about 30 days, the skin cycle for MF diagnosis can be as quick as 5-10 days so the skin does not have time to form.
For me in the early days it normally was red patches coming and going as this was often controlled by my immune system.
It could then went in to develop dry flaking skin slightly raised again my immune system could fight this.
But as time went on the areas become more prolific cover many areas of my body with broken skin and bloody - only treatments could control this. At this point my Dermatologist said that these were tumours developing but on the whole we could control this with creams, retinoid drugs, injections and UV treatments.
What you ware us important so no tight clothes, definitely no jeans, you would just as well ware sandpaper, soft cotton cloths. No scented body products, look for Dermatology approved products but these can eventually be proscribed.
Always around to chat.
