Merkel Cell Carcinoma: I'd like to hear from others

Thanks for asking. Luckily she had no pain from the surgery. Her only complaint was where the IV was. It is still very sore. She thinks a vein got twisted but that has nothing to do with the Merkel. Now she is ready to get the 28 radiations treatments done.

Hello @dfwgal and welcome to Mayo Connect. I appreciate you sharing about your sister's experience with Merkel Cell.

How is she feeling since her surgery earlier this month? Does she have much discomfort?

Hello
How are things going with your husband? Sounds like my 67 year old sister is having a similar experience. She had a sore on her upper left arm (where you get shots). Surgery removed it but she also had a positive lymph node. She met with the Radiation Oncologist 8/21/25 . Will have her planning session next week and then 28 radiation sessions. A pet scan and then see the oncologist after all that, probably in November and she will go from there. It feels like thing are progressing too slowly for such an aggressive cancer.
Where is your husband in his treatment. Praying we all get good news.

I was referred to an oncology office which included the surgeon and medical oncologist. I still see my derm occasionally. He had only seen a couple of Merkel cell cases since medical school. I’m very happy with the care I’ve received at CPMC cancer center in SF.

@wayner1,

I appreciate the information about how it was diagnosed. Were you then referred to an oncologist or did the dermatologist follow through with your treatment?

I noticed small nodule on forearm smaller than a dime. Derm thought it was a lipoma but it got bigger and then biopsy showed MCC

How was your Merkel cell carcinoma staged? Here's an interesting article you may want to share with your oncologist. Are you doing any surveillance using circulating tumor DNA or other tumor markers from blood samples?
https://pmc.ncbi.nlm.nih.gov/articles/PMC11260505/

Hello @wayner1 and welcome to Mayo Connect. I appreciate you sharing your story about Merkel Cell. It sounds like the treatment you have had has been very effective. You must be pleased with the results.

How was your Merkel Cell diagnosed? Was the spot on your forearm something you noticed or was it causing pain?

Was diagnosed with MerkelCell March 2024. Surgery on small spot on my forearm in April and lymph nodes. I had radiation starting in June. 25 treatments over 5 weeks and PET scan every 3 months. All PET scans have been negative so far. I think that is pretty standard treatment plan.

My concern for Merkel was justified since it became recurrent in December of 24. It spread rapidly on the left side of my face and neck and I was almost ready to give up on it thinking it had spread to a major organ. My oncologist suggested a PET scan and I agreed. The scan showed no spread to any major organ so I began chemotherapy on March 12. I have four hours on Wednesday, two hours on Thursday and Friday. It is beyond amazing how much the facial and neck tumors have shrunk. I take the second round next week so we shall see. I share this because there is always hope for tomorrow if you don't give up!