1. < Neuroendocrine Tumors (NETs)

Merkel cell-radiation effective on chest-new 2 cm spot on liver

Posted by kate777 @kate777, Nov 25, 2022

Hi, I'm Kate. Age 49. I was diagnosed with Merkel Cell 4/6/22. Lesion on chest that spread near collarbone. Had surgery and multiple imaging showed that it did not spread to my lymph nodes. I did 6 weeks of radiation ending 8/11. Follow up PET scan on 11/7 indicates only a 2 cm spot on segments 6&7 of my liver, but initial area is clear. Biopsy scheduled for next week and I'm terrified. Should I expect that this MCC has spread to my liver without being present any where else on the PET scan? Thank you in advance for any information you might be able to provide me!

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kate777 | @kate777 | Dec 10, 2022

Well I got my news early and the 2 cm spot on my liver is indeed Merkel cell. I have an appointment Monday to discuss immunotherapy and/or chemo. Any suggestions or advice on how to proceed since I do not have any Merkel cell specialists in my state of Indiana? Thank you in advance.

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1 reply
carol1951 | @carol1951 | Dec 10, 2022
In reply to @colleenyoung "Hi Carol, having a weak immune system and now a sore that won't heal understandably makes..." + (show)
@colleenyoung

Hi Carol, having a weak immune system and now a sore that won't heal understandably makes you anxious. Luckily cancer is not contagious, that includes Merkel cell carcinoma.

It sounds like you should see someone about that sore in your nose that won't heal though.

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Thank you for your help

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 11, 2022
In reply to @kate777 "Well I got my news early and the 2 cm spot on my liver is indeed..." + (show)
@kate777

Well I got my news early and the 2 cm spot on my liver is indeed Merkel cell. I have an appointment Monday to discuss immunotherapy and/or chemo. Any suggestions or advice on how to proceed since I do not have any Merkel cell specialists in my state of Indiana? Thank you in advance.

Jump to this post

@kate777, I'm sorry to hear that your worry was confirmed at Merkel cell carcinoma. Immunotherapy is often used to treat Merkel cell carcinoma that has spread to other areas of the body.

Might getting a second opinion at Mayo Clinic be an option for you? You could develop a treatment plan with Mayo experts, who can work with your local oncologist to receive treatment closer to home.

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1 reply
kate777 | @kate777 | Jan 2 12:44am
In reply to @colleenyoung "@kate777, I'm sorry to hear that your worry was confirmed at Merkel cell carcinoma. Immunotherapy is..." + (show)
@colleenyoung

@kate777, I'm sorry to hear that your worry was confirmed at Merkel cell carcinoma. Immunotherapy is often used to treat Merkel cell carcinoma that has spread to other areas of the body.

Might getting a second opinion at Mayo Clinic be an option for you? You could develop a treatment plan with Mayo experts, who can work with your local oncologist to receive treatment closer to home.

Jump to this post

@collenyoung, Thank you for your empathy and helpful advice. My insurance will not let me go out of state for appointments or treatment, so unless there were grants or other options that Mayo offers that is unfortunately not an option for me.

An MRI confirmed that I also have "salt and pepper" sized Merkel cell on my T-11 vertebra and right pelvis. I am relieved to hear you say that immunotherapy is often used for situations like mine, and I have my first infusion this Wednesday. I am doing my best to remain positive and hopeful. Thank you for your reply and I will keep you updated. I have to believe that this will work and that I have many years left in me!!!

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