Melanoma ?

Thank you I've managed to stay off Google We have an appt a week tomorrow for the results x

I've updated profile

Phone call at half nine this morning appt with consultant 4 hours later Merkel cell carcinoma rare he has only seen 5 cases in the last year He says treatable and definitely a primary He has already done a referral to a surgeon at the a the top cancer hospital here in Manchester Think if I put name ir will be deleted Not the best news but happy it's not a secondary and he was able to access husband's records he and our urology consultant practice at the same hospital He says after the removal hubby will need skin graft as they will take a wide area Asked about sentinel nodes and he said not of great use in Merkel cell He left us feeling positive he said after treatment he will see us 3 monthly to monitor hubby's skin His last comment was see you in 3 months on the other side and we laughed He said don't think we will meet on another world Obviously not the best but by no means the worst Dr warned me to stay off Google and I will My husband is resilient if nothing else I forgot to put on.profile he had 6 days on a ventilator with Covd  pneumonia and pulled thro despite having only a 20% chance I was told I couldn't visit unless to say goodbye Thank you for your words both wise and kind and much appreciated Wishing you all the very.best xx

Hi Wilbert 

I'm glad to read that you and your husband finally know what you're dealing with and it's not melanoma.

I don't have any experience with Merkel cell carcinoma but you might like to join the skin cancer forum as you'll find a few people over there who have been treated for it. I also keep an eye on that forum so will probably 'speak' to you there.

It sounds like your husband has the right sort of spirit to overcome anything that's thrown his way.

Wishing you both all the best

x

Hi Wilbert, my husband has recently been diagnosed with Merkel Cell Carcinoma. It came as huge shock. We have been told it’s a rare cancer and there’s not much known about it. He’s due to see his oncologist in the next week or so to arrange a treatment (chemo/radiotherapy) plan. We thought he might have surgery first but the lead consultant recommended treatment as it’s a fast growing cancer and surgery would only delay any treatment. I know all cases will be different, but it’s a relief to hear other stories related to Merkel.

Thank you we are seeing the consultant at the leading Manchester Cancer hospital 8th Don't think they let you actually name hospital on here It's good to be prepared that surgery may not be the first choice The dermatology consultant who recommended us to the oncologist said he only saw 5 cases of Merkel cell last year My husband's is on his scalp and he said post removal he would probably need plastic surgery Please keep me posted and I'll do same 

Thank you for your reply. It’s good to be able to talk to someone who’s partner is going through the same diagnosis, especially as it is a rare cancer. Since my last message there has been a change in terms of next steps for my husband. His oncologist has recommended surgery first followed by radiotherapy as he said (in his words) this is the best treatment. My husband seems relieved about this as the lump/growth he has is getting uncomfortable as it’s in his groin. He has an appointment this week to discuss his surgery. I will keep you updated.  I’m here anytime you want to talk. Daisy 

Thank you Goid luck with the appt x

Met with consultant at The Christie here in.Manchester All positive he says not all Merkel cell is aggressive but as its rare so little data He has a patient diagnosed 10 years who he monitors and  is still alive and kicking Next step ct scan the sentinel node biopsy tumour removal and skin graft He felt round my husband's neck and said he couldn't feel anything Further treatment depends on scans Came out very positive Now at the Alexandra hospital for stent change and laser Husband just now mentioned lump behind his right ear so that's got me worried but don't think consultant would have missed it Waiting for surgeon and anaesthetist to come Feel one step forward one step back Husband still fine in himself in fact he put up a new light fitting at weekend We laughed taxi turned into cemetery next door to the hospital and we both said oh no not yet 

Hi I also have MCC, I was diagnosed 18 months ago when it had metastasized to lymph nodes, my primary was missed. You  need to push for surgery asap and then radiotherapy to kill off any remaining cells. My MCC metastasized  to my lymph nodes within 6 weeks. I waited a further 12 weeks for urgent  groin dissection surgery!!  I didn't have follow up radiation as my surgeon thought he had got it all. I am now on my 3rd reoccurrence and now have to choose between more major surgery or immunotherapy. For lots of information go to merkelcell.org