1. < Melanoma & Skin Cancer

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

Posted by redneckchic501 @redneckchic501, Feb 9, 2023

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 Melanoma & Skin Cancer Support Group.

wayner1 | @wayner1 | 6 days ago
In reply to @mytimetofly2 "Thank you for asking:) We got incredible news!! My husband’s PET scan was negative for any..." + (show)
@mytimetofly2

Thank you for asking:) We got incredible news!! My husband’s PET scan was negative for any metastatic cancer! Surgically removing the lump on his forearm and the sentinel lymph node got rid of the Merkel cell. We were disappointed to hear that he’s not able to have immunotherapy to stop a reoccurrence. He will be having radiation but we don’t know what treatment will look like until we see radiation oncologist next week. We are feeling very blessed and grateful!

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Was diagnosed with MerkelCell March 2024. Surgery on small spot on my forearm in April and lymph nodes. I had radiation starting in June. 25 treatments over 5 weeks and PET scan every 3 months. All PET scans have been negative so far. I think that is pretty standard treatment plan.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 6 days ago
In reply to @wayner1 "Was diagnosed with MerkelCell March 2024. Surgery on small spot on my forearm in April and..." + (show)
@wayner1

Was diagnosed with MerkelCell March 2024. Surgery on small spot on my forearm in April and lymph nodes. I had radiation starting in June. 25 treatments over 5 weeks and PET scan every 3 months. All PET scans have been negative so far. I think that is pretty standard treatment plan.

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Hello @wayner1 and welcome to Mayo Connect. I appreciate you sharing your story about Merkel Cell. It sounds like the treatment you have had has been very effective. You must be pleased with the results.

How was your Merkel Cell diagnosed? Was the spot on your forearm something you noticed or was it causing pain?

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roywalton | @roywalton | 6 days ago

How was your Merkel cell carcinoma staged? Here's an interesting article you may want to share with your oncologist. Are you doing any surveillance using circulating tumor DNA or other tumor markers from blood samples?
https://pmc.ncbi.nlm.nih.gov/articles/PMC11260505/

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wayner1 | @wayner1 | 5 days ago
In reply to @hopeful33250 "Hello @wayner1 and welcome to Mayo Connect. I appreciate you sharing your story about Merkel Cell...." + (show)
@hopeful33250

Hello @wayner1 and welcome to Mayo Connect. I appreciate you sharing your story about Merkel Cell. It sounds like the treatment you have had has been very effective. You must be pleased with the results.

How was your Merkel Cell diagnosed? Was the spot on your forearm something you noticed or was it causing pain?

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I noticed small nodule on forearm smaller than a dime. Derm thought it was a lipoma but it got bigger and then biopsy showed MCC

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 5 days ago
In reply to @wayner1 "I noticed small nodule on forearm smaller than a dime. Derm thought it was a lipoma..." + (show)
@wayner1

I noticed small nodule on forearm smaller than a dime. Derm thought it was a lipoma but it got bigger and then biopsy showed MCC

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@wayner1,

I appreciate the information about how it was diagnosed. Were you then referred to an oncologist or did the dermatologist follow through with your treatment?

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1 reply
wayner1 | @wayner1 | 5 days ago
In reply to @hopeful33250 "@wayner1, I appreciate the information about how it was diagnosed. Were you then referred to an..." + (show)
@hopeful33250

@wayner1,

I appreciate the information about how it was diagnosed. Were you then referred to an oncologist or did the dermatologist follow through with your treatment?

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I was referred to an oncology office which included the surgeon and medical oncologist. I still see my derm occasionally. He had only seen a couple of Merkel cell cases since medical school. I’m very happy with the care I’ve received at CPMC cancer center in SF.

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