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 again.... so my first very important piece of advise is remove the word terminal from your vocabulary and insert incurable.
Infect you are still being diagnosed, it took 12 months for me but do ‘get’ that people who have been diagnosed with a low grade incurable blood cancer tend to die with it not because of it, so your future is positive, very positive.
As with many types of blood cancers there are no cures but the progression in MF treatments in my 22 years means my skin has been perfect for over 5 years now (hit my community name for the full story)
Dermovate is a good first line treatment and yes, your skin will go in cycles, one patch will start to appear as one disappears. There are lots of other lotions and potions that can be used as your condition comes and goes.
It took about 12 years before I reached 70% skin coverage and that was the point when we had to use more full on treatments. Interesting that there were hardly any signs in places that people could see like my face, hands etc so it can be to many people a mystery that someone says they have cancer and it’s just not cut out...... you can’t cut off your skin!!!
As is said your immune system will do its best to keep your skin under control but as the condition progresses your immune system will need support so that where the various treatment will start to be used.
You will also find that if you get an infection like the flu your immune system will be fighting this and takes it’s eye off your NF so your skin starts to get worse.
I was a College Lecturer that was very stressful at times and this had a direct effect in my skin.
Our brains use up about 20% of our daily energy producing fuel intake, add a stressful job then this goes up to 40% and fatigue becomes more evident then add a cancer diagnosis this goes up to 60% so physical and mental fatigue becomes a problem....... so it is all about controlling the stress triggers.
I had CTs once a year for the first 12 year and nothing showed up relating to MF but did show up other medical issues that had a direct result in distracting my immune system from fighting the MF - it can be a circle of cause and effect.
Good that you have found the Lymphoma Action information helpful and I do actually volunteer for LA 
