Merkel Cell Carcinoma

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Hi All, I was wondering if there is anyone with metastatic Merkel Cell Carcinoma? I'm struggling to find anyone  with it. If you're out there I'd be interested in your treatment. 

  • Yes my husband has been diagnosed with it after finding a lump in his groin. They originally discussed chemotherapy but his oncologist has recommended surgery followed by radiotherapy as this is the best treatment. He is currently waiting to see a specialist which will hopefully be next to discuss his surgery. We know there’s a long road ahead but we’re trying to keep positive. My husband originally had a PET scan which showed no spread but this was a few weeks ago and the surgeon had asked for him to have another one which he had over the weekend. I hope you are ok, there’s little known about MCC. Daisy

  • Hi Daisy

    I pray everything goes well for your husband and he gets treatment quickly.  Finding it early with no further metastasis is the best news. 

    I also had MCC in my groin lymph nodes. I had keyhole surgery which healed quickly no needed for a skin graft thank goodness. It has left me with nerve damage and numbness from my groin to my knee and Lymphoedema. I didn't get radiotherapy following my surgery which I think was a big mistake as I am on my 3rd reoccurrence in 18 months.

    I have had spontaneous regression with my MCC so far. While I was waiting for my surgery the two tumors in my groin had shrunk from 12mm to 5mm before being removed. My second reoccurrence was April last year, it metastasized up the lymph chain to the external iliac nodes. It was decided to wait rather than to rush into major surgery and  rescan in 12 weeks. They had gone in the 12 weeks.

    .A year on and I'm in the same boat new tumors in the internal lymph nodes and possibly liver waiting on results.

    My surgeon has been consulting with colleagues at the Moffitt Cancer Center in Miami and we  had a difficult conversation  last week regarding my prognosis as I am now in a cycle of reoccurrences.  I've been offered immunotherapy now to try to break the cycle or major surgery in 12 weeks if the tumours are still there. The surgery he says will impact greatly on my quality of life. Immunotherapy has a 60% failure rate and possible bad side effects and if doesn't work it will be too late to operate if my tumours are still there. I'm trying to decide what to do but it's so hard.

  • Hi how's things After pet scan fine needle biopsy Mr W has cancer in 2 lymph nodes but not elsewhere We have a meeting with Consultant anaesthetist at the Christie Manchester after pre op Monday to ensure he is OK at 81 with a blocked artery for general anaesthetic If she says OK op is on 30th tumour lymph nodes removal and plastic  surgery If it's  not radiotherapy in place of lymph nodes removal Estimated hospital stay 5 days Not what wanted to hear but wanting the best for Mr W then so be it It's a roller coaster

    Love Wilbert

  • Hi Wilbert, sorry to hear it’s not the news you wanted, but stay positive. It sounds like your husband is in good hands with his oncology team. Things have not been straightforward at this end, although we’re still keeping positive. The second PET scan showed no further spread, however the plastic surgeons at Leicester hospital have been reluctant to carry out the surgery as it’s quite complicated. My husband has two tumours, one visible in his groin and a deeper one. My husband’s oncologist at Lincoln hospital (which is where we live) has recommended 4-6 cycles of chemotherapy for my husband which he starts on Wednesday the 22nd May. He will have 4 cycles and then another PET scan to see if the tumours are shrinking, before making the decision if he will need another two cycles. My husband feels well in himself, although the visible tumour in his groin is uncomfortable for him. He is 62 years old and very active. We walk our dog every day, and keep busy in the garden, he’s still working (home based) and is able to dip in and out of work to suit. His oncologist is very good and has said he will throw everything (treatment wise) at him to help, including radiotherapy and immunotherapy if needed. We have also been told there is a lot of wrong speculation around MCC, mainly because it’s a rare cancer, but it doesn’t mean it’s always aggressive. Please keep in touch, and I will do the same. Sending love to you both, keep positive xx

  • Thanks you aren't having the best of times either but sounds like your Dr is very positive I woke at 4am shaking and shivering but eventually got back to sleep and I'm feeling better now It's just the thought of what my husband will have to go thro the consultant says the surgery will take 5 hours and he will have to stop his blood thinners He has atrial  fibrillation atho no symptoms When he had to come off it last year it resulted in a small atoke several days after he restarted it Thankfully he made a good recovery There is also the ureter cancer in the background at the last laser in April the consultant wasn't able to remove as much of the tumour He is discussing options with the mdt but he says the situation is difficult We are due to see him in June In he meantime we are trying to stay positive and enjoy life keeping busy and active Sending love and good wishes Wilbert x

  • It’s such a worry for us all Wilbert, but we must stay strong together. I often ask my husband if he’s ok and he frequently reminds me that although it’s him who has cancer, we’re all going through it together. We’ve had many restless nights and always end up making a cup of tea before finally going back to sleep. I’m here anytime you want to talk. It’s good to have someone who’s going through a similar thing. Take care and make sure you look after yourself too. Much love xx

  • Thank you Yes if we are both awake it's take it in turns to make a cuppa XxX

  • Hi, Daisy

    So sorry to hear your latest news. I had inguinal tumours and had keyhole surgery to remove them but no follow-up radiotherapy. Mistakes were made in my early treatment and now I'm in the situation I'm facing now. Speed is critical as is receiving the correct treatment. Chemotherapy is not a treatment usually used for this cancer so it would question why your surgeon proposed  to use it instead of radiotherapy. 

    The world's leading expert on MCC Dr Paul Ngheim posted this link in my MCC group These videos are invaluable giving information from diagnosis to monitoring. Please watch before you go for the chemo.

    I would hate for anyone to be in my position that I find my self facing now. My 3rd recurrence now stage 4 and having to choose major pelvic surgery or to try immunotherapy and pray it works and my nurses talking about palliative care all because mistakes were made at the beginning of my cancer.

    Praying for you xx

  • The consultant anaesthetist wax brilliant she had done her homework and hsd accessed John's GP records Salford re his spell there in icu with Covid Fairfield re his stroke and the Alex re bladder/ureter cancer Her opinion was 5 hours surgery too risky expecially if tumour removal under a local followed by radiotherapy was an option She sais she would contact Mr Oudit and message me today which she did Seems he is on holiday and out if the UK However she left him a phone message a WhatsApp message and asked his secretary to contact him Hakf an hour later she rang again he had been on touch She is a formidable lady rather Amazonian he is a rather short man and when she mentioned the need to pin him down we had to stifle smiles He has agreed removal under local and will speak to consultant radiologist and also ring us on Monday when he is back in the UK so looks like all go for 30th It seems she is in theatre with him on Tuesday so she will speak to him face to face I hope he is prepared Next issue will be how many radiotherapy sessions etc   Ferling happier that things are moving When  I thanked Dr Beards thats the anesthetist she said that she had unfortunately had to sit on our side of the desk so she understood how difficult it way Good luck tomorrow It's been lovely here today so we have been working in the garden and had a walk After yesterday's appt we went to lunch with a friend who lives around 25 minutes from the Christie Take care with live Wilbert xx

  • Thank you for the link ots extremely helpful x