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Merkel Cell Carcinoma: I'd like to hear from others
I am new here, and just last month my mom was diagnosed with Merkel Cell. She had a large tumor on her face. I am looking for the Merkel Cell group to get more information and hear others stories. I know Merkel Cell Carcinoma is a very rare form of skin cancer, so I know there may not be many in the group. Any help would be greatly appreciated!
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Not much happened. He basically just did an update on the surgery date in which we have no idea yet.
Yes I will. Our appt is Friday at 9am.
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2 ReactionsWhat good news, @mytimetofly2! I look forward to hearing updates after you see the radiation oncologist next week. Will you post again and let me know what the treatment plans will be?
Thank you for asking:) We got incredible news!! My husband’s PET scan was negative for any metastatic cancer! Surgically removing the lump on his forearm and the sentinel lymph node got rid of the Merkel cell. We were disappointed to hear that he’s not able to have immunotherapy to stop a reoccurrence. He will be having radiation but we don’t know what treatment will look like until we see radiation oncologist next week. We are feeling very blessed and grateful!
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5 Reactions@mytimetofly2, how did the appointment with the medical oncologist go? Does your husband have a treatment plan? How are you doing?
I'm certain that you will need radiation treatment and possibly more.
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1 Reaction@tooltyme2
Hello Sharm and welcome to Mayo Connect,
I can certainly understand your frustration with waiting. That is the difficult part of a cancer diagnosis. Will surgery be the only treatment for you?
I agree! It’s so hard waiting on things. We see the medical oncologist finally this Friday and it will have been 2 months since my husbands diagnosis from the dermatologist. It does seem it would be handled a bit more expedited.
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3 ReactionsHi, my name is Sharm. I had a cancer 21 yrs ago it was CLL. I had 7 months of chemo and then went into remission. Thinking I was in the clear, I was just diagnosed with Merkel cell carcinoma. I had a spot on my arm about the size of a pencil eraser. I showed it to my dr and he said keep an eye on it. 3 weeks later it was the size of a nickle. My Dr removed it not expecting it not to be cancer. So now I am in the slow process of a plastic surgeon and another Doctor trying to decide a time to make for my cancer. When you read that its a RARE AND AGRESSIVE cancer you would like to think that they would be a little more concerned. Now its a hurry up and wait.
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1 ReactionMy husband was diagnosed with MCC on Jan 22, 2025 by his dermatologist. He had a small raised lump on his forearm that was excised along with a sentinel axillary lymph node on Feb 25th by a surgical oncologist. Lymph node was positive so he’s going for PET scan next week with first medical oncology appt a couple days later. I’m a RN so I’ve been reading a lot and I’m feeling pretty fearful quite honestly. Doesn’t sound like good mortality rate for those with metastatic cancer. How far it has spread will show up on PET scan so that will be a big day. It will have been 2 month from first diagnosis to first medical oncologist appointment to discuss treatment. I’m so frustrated this cancer has had two months to grow and spread before any treatment. My husband is 67 and in good health. I pray that immunotherapy will help him get rid of the cancer. I’m not ready for him to be the 52% that are dead in 5 years. Gosh I hope he’s got better odds than that.