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

Hello Theresa, so sorry to hear you are going through this cancer!!
I am wondering if your medical team drew blood to see if you had developed any antibodies for for Merkle Cell? My Merkel cell tumor was on my eyelid, it was 3 mm. It was surgically removed in 2020. I then had 25 radiation treatments. At that time they did a blood draw to see if I had been making any antibodies which I had not. I have blood drawn every six months to check to see if my body is making any antibodies. The first three years I had pet CT scans every three months. Then I graduated to one PET Scan CAT scan each year. Now I have a CAT scan once a year, and have a dermatology appointment. Every 6 months. Keep doing your research ask lots of questions and like someone else said you really do need to be your own advocate. Hang in there, praying for you!!!!

Yes , a course of radiation and immunotherapy seem to be recommended for most , I would get a second opinion, of course .

Thanks Lynn! I am seeing the dermatologist today and am having a cat scan, so I feel better that things are moving quickly.

Theresa, have you contacted your oncologist and gotten in to see him? Hopefully it is not MCC but it would be good to get it checked out. We have to be our own advocates. Maybe get another opinion about the radiation. Hang in there you’ve got this. Lynn

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