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

Thank you for your message 🙏. I'm still waiting for everything to set in. I had a tumor removed 2 years ago from my R forearm. It was confirmed as MCC. Then, about a month ago a lump the size of a tennis ball seemed to pop up over night. The biopsy was done and 4 of the 6 effected lymph nodes 4-5 cm and confirmed as MCC.

Hello @penlandtr1 and welcome to Mayo Connect. I see that you are interested in connecting with others who have Merkel Cell Carcinoma and that @lbrockme and @rogermcintire have responded to you already. On Connect we have other discussion groups on the topic of Merkel Cell. If you would like to meet others on this journey, I'd encourage to read posts in the following discussion group:
https://connect.mayoclinic.org/discussion/merkel-cell-carcinoma-1/
On Mayo's/merkel-cell-carcinoma-1/ website, I found this information:
–Merkel Cell Carcinoma
https://www.mayoclinic.org/diseases-conditions/merkel-cell-carcinoma/symptoms-causes/syc-20351030
I would like to invite @dreams and @redneckchic501 to also share their experiences with you.

What type of treatment is being planning at this point?

I liv s in a small city in the Pacific NW. about 50 miles from Seattle. So far all that has been done is the ultrasound biopsy of the lymphnodes that have formed a little mass under my right arm. I'm not scheduled to see another doctor from Franciscan cancer center until the 8th of January. It doesn't feel right to wait that long but I'm not sure what more I can do at this point.

I will be praying for you to have strength and peace as you go through this.
Please feel free to text me anytime, we are in this together.

Just checking in to see how you are doing. I'm hoping well!!
I have completed five immunotherapy treatments using OPDIVO and as of yet no side effects. After fourteen radiation treatments to the left side of my face there are unpleasant but tolerable side effects.
The words, "This too shall pass" have taken on a special meaning to me!
Here's hoping your holiday season is filled with love and peace.

@penlandtr1, I can understand that you are concerned that you have to wait until January 8. Whenever there is a cancer diagnosis, waiting is the hardest part! As you live in a small city, I'm wondering how far it is to the nearest Cancer Center of Excellence. At least one consultation, either in-person or a virtual, might benefit you greatly as you seek the best treatment options.

Have you considered getting a second opinion (either virtual or in-person) at well-known cancer center?

Latest PET scan technology.....

I have bladder cancer, and scheduled for Chemo round #6 on January 17.

So far, I've had PET, PET/MRI, and PET/CT scans.

On January 5 I'm scheduled for the latest in technology, a PET/??? scan.

Depending upon risk factors as the results of that scan, they will determine whether to start radiation treatments, or go with bladder/prostate removal surgery.

I have a rare form of bladder cancer. Nationwide, an average of only 300 new cases are detected each year.

The VA hospital in Madison, WI averages only 1 case each year.

There was a small purple pimple like place just under my left eye on the cheek and a biopsy was taken July 19, 2023. The biopsy results were obtained on August 2nd and tested positive for Merkel cell carcinoma. I met with the oncologist on August 9 and a full body PET scan was scheduled for August 21. The results showed no spread anywhere in the body.
I met with a plastic surgeon on September 5th and surgery was scheduled for September 21st and on September 18 met with a radiologist who recommended 25 radiation treatments to the left face area.
on August 21st surgery was conducted and lab results indicated Merkel cells were in one lymph node in my left cheek.
My first immunotherapy began October 23 using Nivolumab. After six sessions I have had no adverse side effects.
My first radiation was on December 5th and number 25 was completed on January 11th, 2024.
The radiation was not pleasant but tolerable. Blistering of left side of face and neck, sore throat, tongue and inner mouth along with loss of taste was experienced. A return to near normal is fully expected.
I have a positive attitude that the cancer was caught in the early stages and the treatments given and being continued will give me the best chance for an extended life until the good Lord calls me home!
I would be interested in learning from others who are dealing with this Merkel and sharing whatever of my experience that may be helpful.

Hi, I was first diagnosed with MCC 2 years ago with a tumor in my right forearm. All the test indicated that they got all of the cells that were affected by the cancer. Went 2 years and 1 week when a mass the size of a golf ball appears 🤔 in my R arm axillary lymph nodes. Approximately 6 lymphnodes are 3 cm or larger. Biopsy confirmed metastatic merkel cell carcinoma. I did 25 radiation therapy the first time. Starting 30 treatments on the 18th of this month. It's been a lot harder this time as it was made really clear what I was dealing with the first go round I'm finding it a lot harder to understand what is happening and where I am going from here. I got lab results today that have Ki67 MIB1 SQ Positive 80-90 %
Feeling a lot of anxiety and scared. MCC is so rare it's hard to find information and , I've found even harder to understand. That's why I'm on this group. It helps me to know other people's experiences and strengths. I was you all the best in your journey. Traci

Traci, my wife and I are hoping the very best for you. After recently completing 25 radiation treatments to the left side of my face I most certainly empathize with you having to endure another session of radiation.
I don't know what your lab results reveal but assume they are what is causing your anxiety. In my almost 82 years of life, I have found words provide little comfort and that only leaves a sincere hug, this is what my wife and I send to you.