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

Discussion

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

Neuroendocrine Tumors (NETs) | Last Active: Oct 20 7:30pm | Replies (133)
Comment receiving replies
@lostaglt

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

Jump to this post

Replies to "Hi Colleen -- I'd like some more questions to ask my doctor this week. I had..."
lynn99 | @lynn99 | Jul 22 5:21pm

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

VIEW AND REPLY
dreams | @dreams | Jul 23 10:34pm

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!!!!

VIEW AND REPLY
Colleen Young, Connect Director | @colleenyoung | Jul 27 4:07pm

@lostaglt, did you have an appointment with your doctor this week? What did you learn?

VIEW AND REPLY