Merkel Cell Carcinoma

Mom had a biopsy with wide margins done @ two weeks ago. The diagnosis was Merkel cell carcinoma. She was supposed to have a PET scan and surgery done the next week, but she picked up a virus.

She had a PET scan done the day before Thanksgiving. She told me everything was fine, but her oncologist called her today and wanted her to come in at once to discuss the results of the PET scan. She’ll go tomorrow, but called me and told me that she’s going to cancel her surgery because the urgency means that the cancer has spread, and she doesn’t want to go through surgery if it isn’t going to do any good. She’s also refusing to do radiation therapy which is very effective for MCC.

I hung up the phone this afternoon in exasperation with a strong desire to screech and pull my hair out. WHY is she being so difficult? Then, of course, I realized that she is afraid. She received a possible death sentence and doesn’t want disfigurement on top of that (the radical surgery to her face). She is sad and depressed and lonely.

My poor lil’ brother, who came to Georgia for the winter at my behest when I told him that Mom was thinking about selling off everything and moving north to be closer to her boys, doesn’t know what to do. He trims shrubberies, paints the house, and does miscellaneous handyman chores. Trying to talk somebody out of dying who seems desirous of doing so is difficult.

I’ll go up tomorrow and talk with her oncologist about the PET scan and try to keep her from cancelling her surgery tomorrow. Wish me luck. If you know anything about MCC, please feel free to post a link or anecdote.

I’m likely to be a trifle distracted running back and forth between Florida and Georgia, so I’m not sure how regularly I’ll post for the next few days.


13 Responses so far »

  1. 1

    no2liberals said,

    Of course I wish you and your loved one’s the very best.

    After seeing what cancer treatment did to my Dad, I tend to side with your Mom on refusing Tx, but I realize every case is different.
    He endured the agony of surgery, chemo and radiation, only to be a weak and frail man that needed help getting out of bed or a chair, until finally succumbing to the disease anyway at the age of 51. The once proud and strapping 6’2″ 215lb. athlete/artist/engineer left us gasping for life at about 125lbs.
    I decided at that time I would never go through TX if confronted with a milieu like that and have had a few friends and acquaintances actually do just that.

    God Bless your Mom and her family.

  2. 2

    kcduffy said,

    My dad could not convince the VA that he HURT, and was ‘irregular’ in a way that indicated something might be wrong. They gave him enimas and anti-depressants and painkillers. In late 1989, just before Christmas, a local doc did an exploratory – probably hoping for…oh, hell, I don’t know what the explanation would have been – and found cancer. A lot of cancer. It had gone from manageable colon cancer to full-blown ‘gonna-kill-ya’ liver and colon cancer. Gave him 2 years, tops. The VA took those results and offered radiation and chemo – in Salt Lake, the closest available hospital that offered those. And it might not (probably wouldn’t) work, since there was so much cancer so many places).

    Dad told us he wasn’t spending his last days sick and miserable in any hospital bed.

    He lived a full and busy life, drank beer for lunch and whiskey after supper, hunted, traveled…and died in his own bed on the 11th of November, 1991 – almost exactly a month shy of that 2 year prediction. He was 59.

    I don’t resent his choice at all. I have a visceral hatred of everyone in the VA system, however.

  3. 3

    swampie said,

    Mom had surgery today (still another one to go) and is one sick baby. I ran home to feed the livestock, and will go back up saltines and soup and ramen noodles.

  4. 6

    Croc Hunter said,

    My prayers and thoughts are with the family.

    I have had several family members with different kinds of cancers so I know what you are going through.

    Your cyber-friends are here for you.

  5. 10

    Martin said,

    I’m sorry to hear to hear your Mom has been diagnosed with MCC. I wish you and your family the very best.

    I”m a veteran and uses the Nashville VA Hospital. I’ve had a single primary site stained positive for MCC. The location and lack of margin left me with limited options but amputation of a finger. The regional lmph nodes were removed and tested negative. That was three years ago. So far nothing else has shown up on PET, CT Scans, blood tests, oncology, and dermatology exams.

    I know the MCC information doesn’t read well. There are so few cases of MCC that the information and knowledge makes stagging harder. They say new blood test can help in stagging. The PET scan read as if they have the greatest success. Diagnosis and the lymph node basin associated with the primary site seems to help.

    My wife, three daughters, their families were slamed with knowledge and emotions. Because of my luck so far the “talk” has dropped off. Each time they hear I’m heading to the VA the concern level jumps up.
    I’ve read a good bit, questioned my doctors. Knowing the details on your Mom would not help me…listening to the oncologist, dermatology doctors, and your Mom are your best options.

    If reading is what you want or need then this site might help. Pat O’Conner post to this blog site: I setup Google Alerts and read my way through the hits. I noticed this Pat O’Connel name kept appearing of news on MCC. It appears Pat has made it his ambition to help other cancer patients. I am certain your Moms’ doctors have access to other websites for phacians which provide them with information that I may not see on lwith my searchs.

    I did read at one time about one patient with MCC site on the liver and and how they changed their eating habits, increased their vitamin D, and I don’t recall what else but they say the primary site was gone after x amount of time. I already take vitamins and more since my operation.

    Talking, love, prayers, and luck will help you All. There are no easy paths to take. I wish I could tell you there are specific steps or places that will set all things right. I’ve not found it as yet.

    I respect your Mom’s decisions. I wish you All the best and hope this plays out right for you all find peace.

    • 11

      swampie said,

      Thanks, Martin! I have to take vitamin D3 throughout the winter to keep my immune system from getting its butt kicked by flu and cold viruses. Mom protested she was taking a multivitamin when I asked her about D3. I’ll pick some up for her.

      I took Mom back to the surgeon’s office today. She had a lot of the right side of her face removed, then skin pulled up to cover the wound, and about a 4″ x 2″ piece of skin from her neck was grafted below her eye between her nose and ear. Pretty much everything from her bottom eyelid between her nose, ear, and neck was removed to get clear margins.

      She goes back to another surgeon Friday to get the regional lymph nodes removed for staging. They did light up in the PET scan.

  6. 13

    Martin said,

    Check this company out…I like what I am reading on how they’ve treated Merkel…
    OncoSec Medical: 2013 Will Be A Year Of Crucial Events
    Seeking Alpha
    OncoSec is also conducting a phase II trial in Merkel cell carcinoma, a skin cancer that is much more deadly and difficult to treat than malignant melanoma, which is one of the deadliest cancers. This trial will enroll 15 patients and so far five of …
    See all stories on this topic

    Their website is

    Good luck.

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