Mucosal Melanoma: Celebrating the Survivors

Today is the one year anniversary of the day that Laura was rushed to Beth Israel Hospital to see a top cancer specialist. On a routine exam in the morning her gynecologist found a golf ball size mass in her vagina.  Two days later we were told it was mucosal melanoma.  11 days later we were told there was no cure.  ‘Go home, there is nothing more doctors can do for you.’ Online all we could find about the disease were stories of tragedy and despair.  So I am dedicating today’s post to the mucosal melanoma survivors.  Especially the two women who told me their stories. They both had the almost identical vaginal mucosal melanoma to Laura and are still alive today.

These two women’s stories show you can recover from this rare aggressive disease.  Both women had minimal surgery.  The first woman had her tumor surgically removed (not the radical pelvic exenteration that Laura was offered at Beth Israel hospital) and then had radiation to shrink and destroy any rogue cells left in the area.  She then did the Gerson therapy for 2 years to rebuild her immune system and ensure the cancer never returned.  She has been well now for over 15 years.  The second woman, Teodora was rushed to the ER with profuse vaginal bleeding. The doctors assumed it was just a fibroid, so she went home. When the profuse bleeding returned a month later, she had an immediate laparoscopic hysterectomy with minimal surgical invasion. She is confident this saved her life.  ‘More invasive surgery would have spread the cancer to my lymph nodes and tissues’.  The surgeon pulled out her uterus (and with it the tumor) through her vagina (which she believes caused a minor spread of the disease to her vagina. This was caught quickly and treated with radiation). It is noteworthy that her tumor wasn’t biopsied when it was still inside her body (only  after the whole uterus was removed). I am pretty certain that biopsy spreads this disease (as it obviously did with Laura).  Teodora is well and surviving 4 years on. Bravo!!  Bravo!! My hope is that the doctors (and patients) can learn from these stories and more like them.

If you know someone who has survived this disease please do contact me and tell me your story.  The more information we have, the more chance there is to save lives.

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5 thoughts on “Mucosal Melanoma: Celebrating the Survivors

  1. Lucie, Thanks for those inspiring updates on survival. I heard a piece on NPR this w/e and thought of you and Laura. It was about the FDA warning on removal of uterine fibroids using power morcellation which in lay terms chops up the tissue and extracts through tiny incisions. As a procedure, it is much less invasive than a full incision through muscles, and the recovery time is minimal. However if the tissue contains cancer (which is not known until removed) it may spread. Small chance but growth can be aggressive if cells present.

    In my non-medical mind that kind of goes along with your post today that “spilling cells” (my phrase) is a higher risk maneuver – whether biopsy or grinding up tissue with a morcellator. It also seems to be in line with the recommended reduction* in pap smears from annual to every three years b/c some things like HPV can resolve themselves undisturbed, but are aggravated by the tissue disturbance of a pap smear.

    The Dr on the power morcellation radio interview said it was a very slim chance of spreading cancer but I am a bit skeptical. It definitely warrants deeper conversations with the doctor who recommends this procedure to see if the overwhelming benefits indeed outweigh the risk of spreading potential cancer cells. The FDA warning was mid-April 2014 and there are many articles but here is one on webmd.

    http://www.webmd.com/women/news/20140417/fda-warns-against-procedure-for-uterine-fibroids

    *http://well.blogs.nytimes.com/2012/03/14/new-guidelines-advise-less-frequent-pap-smears/?_php=true&_type=blogs&_r=0

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  2. I lost my Mom to the same type of mucosal melanoma 1.5 yrs ago 😦 I miss her so much. Thank you for sharing this beautiful blog. I hope your doing ok.

    Hugs,

    Wendy

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    1. So sad to hear about your mom wendy. It is such an awful awful disease. what type of mucosal melanoma did your mom have? Did she try any treatments or did they tell her there was no hope from the start? Don’t bother to answer these questions if it is too painful for you. I am sad too because I miss laura everyday. I keep thinking how much she would enjoy being here (she loved good food and the beach). But I also feel blessed to have had her in my life for 3 precious years and for going on the extraordinary journey together of Laura’s last few months. It felt very precious to be with her and witness what happened and to see how gracious she was at the end of her life. Also, now I don’t feel scared of dying. Laura showed me it is actually just a transition, like being born. What happens afterwards is a mystery, although I am beginning to see a lot of clues all pointing in the same direction. I’ll post more about this in a day or so. For now, I am just enjoying all the lovely food and the little dream house, trulli, in Puglia.

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  3. Wow,I must have a feisty Guardian angel through and through. Now reading Katy’s post,I am amazed the things did turn out in my favor against all odds.Because my local Gyn really DID try to biopsy my “fibroid” ,but was not able to get to the biopsy site due to the profuse bleeding .So he proceeded with the laparoscopic surgery instead as my hemoglobin levels were quickly coming down and they needed to operate ASAP.Knowing what I know now /they say one gets wiser with age/ I would not let him touch me.
    Lucy,Thanks for the mention.I admire your efforts to spread awareness about this most deadliest disease of all ,despite your pain.God Bless You.

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  4. I’m not that much of a online reader to be honest but your sites really nice, keep it
    up! I’ll go ahead and bookmark your website to come back later.
    All the best

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