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

My tumor on my nose, tripled in size in about three weeks and changed color. When I had my surgery, they took out some lymph nodes on both sides of my neck. They did find some individual Merkel cell carcinoma cells in the area. I hope you can do your research and find a treatment center that you like. And get in quickly.

Roger, good to hear your margins are clear and you are golfing! I am enjoying my walks in the woods and am slowly getting my energy back. I added weights a few weeks ago and biking when I can. Stay healthy.

Hi Colleen -- I'd like some more questions to ask my doctor this week. I had no idea that MCC had stages. Sentinel lymph node removal was negative ... negative margins around tumor removal.

I had a golf ball size MCC on my forearm removed June 21, 2024 and no radiation treatment has been suggested / planned - this is not making me feel comfortable.

In addition, week 3 now -- the skin graft appears to have a pea size MCC - looks similar to many MCC tumor images I see (different from my original MCC which was under the skin).

I could use some support.

Thank you.
- Theresa

I had surgery to remove a MCC on my left forearm last month -- it was the size of a golf ball.

How large was your original tumor? How large a margin was removed?

My golf ball size tumor was removed along with a chunk -- 6"x3". Luckily - it was above the muscle so it basically looks like a shark bite taken on forearm / bicep.

Best wishes with Keytruda ... I'll keep up with your story.

- Theresa

I had a meatball sized MCC on my left forearm removed in June 2024 at Mayo Clinic.

I am trying to get a sense of how many people had radiation after tumor removal.

Thank you.

- Theresa

Hi My husband was diangnosed with Stage 3B merkel cell on his nose ....in summer 2021 ....he had it removed and all lymphnodes in R side on neck ...One lymph node did have MCC in it ....so he had 30 rounds of radiation ....fall of 2022 a follow up CT scan showed an enlarged Lymphnode in throacic region - lower chest ....around the Aorta...so non removable ...but they biopsied it and it was positive for MCC ....it increased rapidly within 7 months from2.5 cm to 12.7 cm ....so he received immediate another 30 rounds of radiation ....and followed by Immune therapy in Canada we call it Avelumab ...US I believe call it something with a Benovcia ...something like that ....his tumor after the radiation and 3 months of Avelumab went down to 5.4 cm ....with NO side effects ...doing well ...waiting on the results now for the 6 month CT scan results ....if you have any questions pls feel free to ask ..hugs wishin you all the best

Thanks, Tom! I am in NC and need to investigate Duke and UNC to see if either would meet my needs.

Lynn, I do worry about getting this done quickly…I think my job—and my husband’s—will be to research to find experts who will proceed as quickly as possible. Your story is inspirational!

Hello Lynn99, it is great to hear how you are doing! Most of my radiation side effects are dissipating and this week I complete my 20th infusion with no side effects. It appears the Merkel is in check but after four years my throat cancer returned. Fortunately, I was able to have surgery at Barnes hospital in St. Louis and it looks like I have been granted a reprieve in that the margins were clear after removing the cancer.
I'm still active playing golf, walking, working out and taking care of the yard. I hope you are enjoying your walks in the woods.
It was good advice you gave to Lynnmerk1. We are all in this together!

I was dx the end of Dec 1023 and had surg in Jan 2024 and 30 radiation treatments in Feb and March. It is a scary thing and I had never heard of Merkel Cell. So far my scans are clean ( thank God) and my face is healed and I’m getting stronger and better every week. Get your surgery scheduled as soon as you can and get your treatment started as soon as you can. I was able to move up both my surgery and original biopsy by cancellations and lots of people praying. Find a treatment center that is familiar with this disease and treatment. Stay positive and active, you can do this. Praying that you beat this!