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DiscussionMerkel Cell Carcinoma: I'd like to hear from others
Neuroendocrine Tumors (NETs) | Last Active: Oct 20 7:30pm | Replies (133)Comment receiving replies
Replies to "I just found this group and read the comments. Because this is such a rare cancer,..."
@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.)
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.