Merkel Cell Carcinoma: I'd like to hear from others
I am new here, and just last month my mom was diagnosed with Merkel Cell. She had a large tumor on her face. I am looking for the Merkel Cell group to get more information and hear others stories. I know Merkel Cell Carcinoma is a very rare form of skin cancer, so I know there may not be many in the group. Any help would be greatly appreciated!
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Hello @hunter59 and welcome to Mayo Connect. I appreciate you sharing your journey with Merkel Cell carcinoma. It sounds like your treatment was quite effective and that your medical team was able to assist with the side effects. You mentioned that the Keytruda affected your thyroid. Has the thyroid problem been treated with medication?
How are you feeling now?
Amen to the "positive thoughts"! Thank you for sharing!
I was diagnosed with stage 4 Merkel cell carcinoma in Jan 2022 when I developed a lump in my neck. Biopsy confirmed the type of cancer and further test indicated it spread to my liver as well. I started immunotherapy in March on Keytruda and have been getting this every three weeks since. The liver is clear today and the lump in my neck has reduced in size to where it cannot be felt but scans still show it is present. We have no idea where this cancer started never noticed anything on the skin. I previously had esophageal cancer and had my esophagus removed and stomach pull up along with chemo and radiation. That was seven years ago and there has been no recurrence. The Keytruda affected my thyroid but it is now under control and I have had no other side affects. So the plan is to continue on the Keytruda as long as I continue to tolerate it. Keep positive thoughts as treatment options are always improving outcomes as research continues.
Hello Elizabeth, just checking in to see how you are doing.
Hello Lucky Man! I was very happy to read your post regarding Merkel. I am an 81-year-old who was diagnosed with Merkel in early August. I had esophageal cancer caught early and removed four years ago and two years ago had prostate cancer removed robotically. I have to admit that Merkel has me concerned because of its aggressive nature.
I am currently undergoing immunotherapy every two weeks and had surgery to remove the cancer site (just under left eye) and two lymph nodes from my jaw area; twenty-eight radiation treatments are to begin next week. Merkel cells were found in one of the lymph nodes that was removed.
I believe the cancer was detected early so I am very positive but concerned.
Your post helps with the concern and I am very grateful you shared your situation.
Hi. I’m a 72 year old male. I was diagnosed with Merkel cell on my right forearm 11 years ago. It just appeared as a bump under my skin. Luckily I already had a dermatologist appointment scheduled a week later. The biopsy revealed Merkel. Even more rare at that time, there was no specific treatment. I had a PET scan that showed a few affected lymph nodes under my arm. We did surgery almost immediately, followed by 30 radiation treatments. Other than some fluid buildup under my arm I had no other complications. The incision on my arm took almost a year to heal because of the radiation treatment I get scans every 3 months due to this and another cancer. No signs of any reoccurrence. I wish everyone diagnosed, the same good outcome I had. And RIP JB 🏝️
@sharris, your story and experience is very welcome, especially since Merkel cell cancer is so rare. What luck that your vanity helped you catch the cancer while it was still at stage 0. I bet the grandkids love having a dorky grandpa at the poolside.
Thanks again for sharing!
I can't offer much on therapies after surgery to remove the cancer as my treatment has been limited to monitoring (a series of CT scans, x-rays and blood work every three months for the first two years just ended and now every four months for the next three years). We discussed radiation after the excision surgery but my cancer board decided after I was fitted with the mask for radiation that it was not needed because the second round of pathology on the tissue taken in the excision was completely clear, as was my lymph node, and the diameter of the original mass was just under the threshold for radiation for a stage 0. Somehow (fortunately) my dermatologist got the entire mass on the first try when he removed what he sent to the lab for the first biopsy and it hadn't had time to grow much. For what it's worth, I'm a 67 year old white male (the biggest patient group is older white males as I gather) but when I asked about chances of recurrence given my extensive history of melanoma and other assorted skin cancers, my doctors said that unlike the odds for recurrence of melanoma for me since I've already had two, there aren't enough data for Merkel Cell cases to draw any strong correlations or give odds on recurrence - hence the long schedule of follow-up scans, etc. I think the most frustrating part of this for me and I'm sure others is the uncertainty of typical outcomes, because of the limited research when compared to the literature on other skin cancer types. Good luck with your treatment!
Thank you so much for sharing! I have Merkel that was found just under my left eye. Pet Scan showed no spread but when the site was removed along with two lymph nodes Merkel was in one of the nodes.
I have had one infusion using Nivolumab and radiation will begin within a few days.
I too have had Basil cell cancer removed from my nose and like you love the outdoors. Although I am an 81 year old male I'm not ready to cash it in just yet!
What to expect is a cause of concern and would appreciate any insight you would be willing to pass on.