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

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.

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?

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/

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

@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 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.

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.

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?

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.