CTCL - Mycosis Fungoides

FormerMember
FormerMember
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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:

  • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment

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 ) 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.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    0 FormerMember in reply to Thehighlander

    Hi Mike,

    I have seen you all over the place on here and have already read through your rather challenging journey, glad you are now in remission and put up a good fight! 

    No talk of additional tests yet, MDT requested further biopsy's which they took on Monday, just waiting on the results, they took a punch biopsy from a rash on my shoulder and a nodule from my leg what was about 1cm big been there for years also. They have waitlisted me for UV treatment but the potent corticosteroid she has told me to use has had a positive response to about 60% of the rashes I had, they aren't completely gone you can still see a discolouration on the skin and it is a different texture to the rest of my skin, but the redness and dry skin has cleared up. She has now decided to hold off on the UV treatment for now as you can only have a limited number of visits due to other risks?

    Been told to wait for the results of these biopsy's and they might refer me up London to a more specialist clinic due to my young age. 

    So just to try and clear this up, this IS a blood cancer right? Not a skin cancer but is treated like one? Also as it is to do with my white blood cells acting abnormally does it affect my immune system?

  • 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.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    0 FormerMember in reply to Thehighlander

    Now I'm even more confused than before, just had a call from the hospital both additional biopsies show no abnormal cells, now she isn't sure if the cream has managed to treat the skin before they took the biopsy or if this might not have even been MF to begin with!

    They have discussed my case at length in the MDT team this morning and they have agreed to refer me to guys st thomas hospital for a more thorough investigation. 

    The doctor even told me to stop using the cream to try and make the patches get worse/come back out before my appointment with them?

    I'm completely emotionally drained now. My partner already suffers from mental health issues and this on top really is not helping... is this usual for this type of thing? Or has the doctor just made a monumental cock up? 

  • 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.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    0 FormerMember in reply to Thehighlander

    Well quick update. Had my referral appointment today at guys and I was seen by Mr Whittaker. 

    He had read through my history and biopsy results which he said my first biopsy is very typical of MF, he has yet to get my second biopsy results but after checking my patches said he is sure it definitely is MF just from my first biopsy and the way my skin is presenting the rashes/patches. I have been booked in for UV treatment that will start in January. Fingers crossed it helps as they appear to be spreading again.

  • 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.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi

    I'm new to this forum and I'm going through a very similar experience.

    I suffered from 'grotty skin' for a decade, no pattern to why it flared up or when, but it was more visible when i was warm. In Jan this year i developed a tumour on my left arm.

    My GP referred me to a dermatologist for the lump, who after a full body exam connected all the dots (if you pardon the pun) of my different types of skin complaints (I had 4 different types of skin troubles all on upper body and arms) and suspected MF. This came as a huge shock. He took two biopsies one from the lump and another from my other arm and a strange patch i had there. both came back from the lab confirming MF. The dermatologist has written to my GP with the prognosis and also sent a referral letter to the Christie. 

    I'd got my head around the diagnosis and thanks to all the great info on here and on action lymphoma, was pretty positive. This might sound strange, but i was glad i finally had definite diagnosis and could move forward with a treatment plan.

    I'm feeling wiped out with fatigue and have gone from a full on career to managing to being able to do something for a couple of hours a day. Its debilitating. I'm off work because of it, which is just not like me and i hate it.

    I saw a professor at the Christie last week, who led me to believe the diagnosis was still a way off. Emotionally, this has knocked me back. This might sound really daft, but i feel like I've gone backwards. The professor is going to call for my biopsies and take a look with his team at them before calling me back.

    I'm beside myself with the fatigue and also feel like a bit of an idiot, because i thought i had a definite diagnosis and was being referred for grading and a treatment plan and kept my work informed accordingly, but i feel like i'm pre diagnosis again so i feel like i'm being inconsistent, but all i can share is what I'm being told. Anyone else got any similar experiences? If so how did your handle it and can anyone offer any advice.

    Final question... can anyone share their experience of developing the tumours? Mine started like a raised pin in the middle of a patch of eczema, then grew and grew, was incredibly sore, grew again quickly after the biopsy, but now it looks to be drying out and shrinking. I also feel that a new one is starting to develop right at the side of it. Anyone else had anything similar?

    Many thanks in advance. Confused from Yorkshire :-)

     

    .  

  • Hi again  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.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks Mike, really sound advice. You sound like you've had one heck of a ride with everything. I'm sorry to hear that, but you sound so positive.

    I'm genuinely not worried about it being terminal - I think that's why I could get my head around it. I'm more stressed with work to be honest - separation anxiety.

    The dermatologist prescribed Dermovate, which has been magical and transformational. I've had anti fungal creams and steroid creams before, none of which made a jot of difference, but this one cleared up everything within 3 weeks.

    The lesion on my left arm seems to be drying up and disappearing, but I'm sure a new one is starting right next to it. Is this normal? Do they tend to disappear on their own after a few months?

    I've not had a CT scan yet, i was expecting that when i went to the Christies, but the professor seems to want to look at the biopsies first..