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
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.
