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

Discussion
Comment receiving replies
@sharris

I just found this group and read the comments. Because this is such a rare cancer, I thought I'd add my story for what it's worth. I've just had my latest check-up two years out from finding out I had Merkel Cell - a little purple spot on my forehead that my dermatologist did not at first think anything of. I have been going in two or three times a year for dermatologist sessions for about ten years as I've had several instances of melanoma, squamous and basal cell carcinomas - probably from years of sailing. I didn't like the purple bump on my forehead and asked him to remove it more out of vanity than concern, but he was happy to send it in for a biopsy and found out it was serious. He told me he hadn't seen one in twenty years of practice and he sent me immediately to MD Anderson for treatment. Everyone here has experienced or knows about what's next with Merkel Cell - lots of doctors and excision surgery followed by decisions about follow-on therapies. I was terrified after I read up on what Merkel Cell was all about. The MD Anderson folks were really great about calming me down and dealing with what I needed. I was VERY lucky as the excision surgery and sentinel lymph node removal showed that I had gotten treatment early enough to be "stage 0" (in situ) and the very large incision site healed very well and ended up looking like an extra frown line on my face. Even with that, I am still going back to MD Anderson regularly for a CT scan and a chest x-ray and blood work to monitor things. This will continue this for three more years minimum they say. My dermatologist still talks about my case with me when I go back for my regular 4 month check up because it is so rare. Bottom line, I think, is to get regular exams but also be your own advocate. If you see something on your skin that you are worried about, get it removed and get a biopsy. There are worse things than finding out it's nothing after the lab takes a look. I also have become really really vigilant about limiting outdoor exposure (no more sailing) sun screen, sun glasses (it can appear in eyes too), hats and fishing shirts with long sleeves when I go outdoors. I look like a dork in the pool when I'm with my grandkids (and even then I sit under an umbrella mostly), but I'm alive and that's a fair trade in my book. I have real empathy for people going through this and appreciate finding this group. I wish everyone the best.

Jump to this post


Replies to "I just found this group and read the comments. Because this is such a rare cancer,..."

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.

@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.

Thank you for sharing your story. Dorky or not, you’re being very cautious about preventing skin cancer from returning and also modeling to others how to be careful. I had a Merkle Cell tumor removed from my eyelid, followed by radiation in 2020. The surgery combined with radiation has made my eyelid quite tight so it rubs on my eyeball, which is painful. I found wearing a Band-Aid contact lens helps protect my eyeball from the lid rubbing on it. I’ve also gradually discovered a combination of four different eyedrop medications that help with pain and swelling. when I’m outside, which is my favorite place to be, do, I wear a large sun hat, combined with ski goggles, even in the summer. I have had a few people ask me, “what’s with the goggles?” This question, indirectly, allows me to explain my health and skin cancer prevention. Currently, I am being monitored twice a year for skin cancer. I go to Mayo Clinic in Rochester. I see a dermatologist twice a year, and will be having my second three dimensional imaging done since Merkel Cell was removed. I had one melanoma surgery which was caught early and was completely removed from my left arm. Oncology has now graduated me to one time here for a CAT scan, chest neck and head. I am so thankful that I have gone far in life without Merkel returning, however, it is always in the back of my mind my mind. I’m very thankful for this forum and look forward to everyone’s support. (Here is a picture of me last week while hiking in one of the state parks. Kind of goofy, but I thought the limestone was so interesting.)