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 | Apr 26 9:11pm
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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 26 8:08pm
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

Jump to this post

@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?

REPLY
1 reply
wayner1 | @wayner1 | Apr 26 2:04pm
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?

Jump to this post

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

REPLY
1 reply
roywalton | @roywalton | Apr 26 12:31pm

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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 26 12:26pm
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.

Jump to this post

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?

REPLY
1 reply
wayner1 | @wayner1 | Apr 26 11:18am
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!

Jump to this post

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.

REPLY
1 reply
rogermcintire | @rogermcintire | Mar 25 12:41pm

My concern for Merkel was justified since it became recurrent in December of 24. It spread rapidly on the left side of my face and neck and I was almost ready to give up on it thinking it had spread to a major organ. My oncologist suggested a PET scan and I agreed. The scan showed no spread to any major organ so I began chemotherapy on March 12. I have four hours on Wednesday, two hours on Thursday and Friday. It is beyond amazing how much the facial and neck tumors have shrunk. I take the second round next week so we shall see. I share this because there is always hope for tomorrow if you don't give up!

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tooltyme2 | @tooltyme2 | Mar 25 11:50am
In reply to @colleenyoung "@mytimetofly2, how did the appointment with the medical oncologist go? Does your husband have a treatment..." + (show)
@colleenyoung

@mytimetofly2, how did the appointment with the medical oncologist go? Does your husband have a treatment plan? How are you doing?

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Not much happened. He basically just did an update on the surgery date in which we have no idea yet.

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mytimetofly2 | @mytimetofly2 | Mar 24 8:15pm

Yes I will. Our appt is Friday at 9am.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 24 3:06pm
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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What good news, @mytimetofly2! I look forward to hearing updates after you see the radiation oncologist next week. Will you post again and let me know what the treatment plans will be?

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