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!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Welcome @kate777, I can imagine that your terrified that Merkel cell may have spread. Spots on your liver can mean many things, but I know it's near impossible to not leap directly to thinking it's the cancer that has spread. Remember that the lymph nodes showed no sign of spread and hold on to that. It's good that your doctors are being thorough though. Because, if it is spread, it's best to know now and to deal with it.

I'm tagging @mkhighpoint @angieklima @collielady and @dreams who also have experience with merkel cell carcinoma and can support you through the waiting period and whatever the results of the biopsy bring.

Keep in mind that the majority of liver lesions are noncancerous, or benign. They are quite common, being found in about 30% of people over the age of 40.

I know this is easier said than done, but can you try to put it out of your mind until your appointment next week? What enjoyable activity might help distract you this weekend?

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@colleenyoung Thank you so much for welcoming me and for your quick response and encouraging words. I did not know that most liver lesions are benign or even common in those over 40, so that certainly gives me hope!

I have had generalized anxiety disorder since childhood, so it's difficult not to think about it or the possible outcomes, but I am doing my best and your knowledge and comments have certainly been a huge help. Thank you for tagging others with MCC experience and for just being here. I appreciate you so much!

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I understand your fear of what’s to come I’m a NET survivor first diagnosed in September 2011 my life have been pretty good for the last 11 years, I would have cat scan done every year and than this year it came back with small tumors on my ovaries and liver , I was afraid and I cried etc . My husband assured me we’ll get through it , I also remember the best part of this evil is the carcinoid is very slow growing as it had been for me , therefore I was going to remain calm face it head on and not let fear be my motivation instead allow my faith to guide me by staying positive , hang in there take one day at a time find the good in your day and focus on them fear isn’t going to make things better only worse 🙏🏽

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Hello @kate777

I'd like to join @colleenyoung and @char1962, in welcoming you to Connect. I've had three NET tumors removed from the upper digestive tract. When an MRI showed a liver lesion, I reacted the same way you did. However, now after four years, the lesion has disappeared. I do understand that one bout with cancer can leave you fearful for more cancer. This is a human reaction.

As much as possible, I'd encourage you to take a deep breath and wait for the results of the liver biopsy. Try to get your mind on other things. Read a book, take a walk, go out to lunch, see a movie, or talk with a friend. Just do anything that is pleasant and will get your mind off of this new development.

What day will you be having the biopsy?

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@kate777

@colleenyoung Thank you so much for welcoming me and for your quick response and encouraging words. I did not know that most liver lesions are benign or even common in those over 40, so that certainly gives me hope!

I have had generalized anxiety disorder since childhood, so it's difficult not to think about it or the possible outcomes, but I am doing my best and your knowledge and comments have certainly been a huge help. Thank you for tagging others with MCC experience and for just being here. I appreciate you so much!

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Welcome Kate.
You have my sympathy as you go through this time in your life. I agree, that it is so hard to get control over the fear and anxiety, first after having the MCC diagnosis and treatments and now the spots on your liver. Colleen and the others have been very supportive and given helpful advice. I try to do the following.
Live one day at a time, maybe one hour at a time. If you feel good today, self talk that you are healthy and will live as if you are of full health. Pray and have faith, that God is with you and is holding you through your trials. I also thank God, as He has provided a way for me to receive ongoing care from a highly skilled team of doctors at Mayo in Rochester. I will pray for you and the other people in this post for healing. Thank you, Colleen for including me in this post.

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@char1962 @hopeful33250 @dreams Thank you all so very much for your replies, attentiveness, kindness, understanding, and words of encouragement! I greatly appreciate each of you sharing your experiences and helpful advice. My biopsy is nice and early tomorrow morning; 6 AM. Haha. I had to take what I could to get in as soon as possible. I likely won't know more until my oncologist appt. on 12/12. I will update you when I know more. Thanks again to each of you and I'll be keeping you in my thoughts and prayers.

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@kate777

@char1962 @hopeful33250 @dreams Thank you all so very much for your replies, attentiveness, kindness, understanding, and words of encouragement! I greatly appreciate each of you sharing your experiences and helpful advice. My biopsy is nice and early tomorrow morning; 6 AM. Haha. I had to take what I could to get in as soon as possible. I likely won't know more until my oncologist appt. on 12/12. I will update you when I know more. Thanks again to each of you and I'll be keeping you in my thoughts and prayers.

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Yes please let us know , this is the time that can be trying the waiting game don’t go down any negative rabbit holes , how I combat times like this is to be grateful I’m still here and show my friends and family all the love I can muster, since it’s the holidays get in the spirit , God bless you and I’ll be thinking of you come 12-12

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@kate777

@char1962 @hopeful33250 @dreams Thank you all so very much for your replies, attentiveness, kindness, understanding, and words of encouragement! I greatly appreciate each of you sharing your experiences and helpful advice. My biopsy is nice and early tomorrow morning; 6 AM. Haha. I had to take what I could to get in as soon as possible. I likely won't know more until my oncologist appt. on 12/12. I will update you when I know more. Thanks again to each of you and I'll be keeping you in my thoughts and prayers.

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@kate777,

I'll be looking forward to hearing from you! Wishing you all the best.

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Can you contract Merkel cell from kissing if your partner has MCC. I have a weak immune system and have had issues with a sore in my nose that won’t heal. Have been told I was a pseudo carrier. Husband presently has neuroendocrine pancreatic cancer and is always getting these lumps cut out of his legs arms and back

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@carol1951

Can you contract Merkel cell from kissing if your partner has MCC. I have a weak immune system and have had issues with a sore in my nose that won’t heal. Have been told I was a pseudo carrier. Husband presently has neuroendocrine pancreatic cancer and is always getting these lumps cut out of his legs arms and back

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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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