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Thread: Vulvectomy for melanoma

  1. #11
    Senior User
    Join Date
    Jan 2014
    It has been a long time since I updated this thread. I am in fact 5 years 8 months out from the right radical vulvectomy, bilateral sentinel lymph biopsies, and clitorectomy in May 2013. That was my original surgery at the time of my initial diagnosis. Vulvar melanoma at the depth I had with regression has a prognosis that is not entirely reassuring at 5 years, but here I am! I wonder if any of what I wrote above was helpful, in all this time, to anyone facing vulvectomy and/or facing vulvectomy specifically for melanoma. It is hard not to feel as though other women experiencing this are like part of an extended family in the world. I know it can feel like such a lonely diagnosis. Any type of mucosal melanoma can feel like a lonely diagnosis. But vulvectomy is a scary surgery.

    Since my third vulvar surgery on the left side to essentially remove the entire area at risk of melanoma in situ, which had been discovered incidentally on my second surgery (it could never be pinpointed with biopsies), I have not had recurrence of melanoma in any form, knock on wood. Life has been busy with work and a few family crises that have dominated my time and energy the past few years, but also two wonderful sons who are now teenagers. For the most part, I follow up with my surgeon and oncologist regularly, have blood work done, and have melanoma skin checks regularly (as do my sons).

    I do continue to have a certain amount of issues with pain in an area just below my hip bone on the right, and in my right inguinal area, where I had a lymph node that remained swollen about a year after my original surgery and my oncologist had drained and submitted for pathology. It came back showing no signs of cancer but for some reason that area remains tender, and when that right hip starts to ache, it can radiate to that lymph node region and sometimes down the inside of my right thigh and into the surgery area. It even radiates into my back. No one knows exactly why, other than to speculate that it may be adhesions (these can form after surgeries) or nerve related (that area is particularly full of criss-crossing nerves). I have also had issues with some right-sided lymphedema into my ankle and foot, which is most likely due to the sentinel lymph node biopsies, though with the small number of nodes actually removed, would probably be quite rare a response, but the impression I get is that with surgery sometimes you just never know. It was the clitorectomy I disliked the most as time went on. I don't like the lack of sensation it created, it was very difficult to get used to that particular aspect, and in fact it is still an uncomfortable, odd feeling left behind that most of the time I don't notice at all but occasionally is unpleasant. I have absolutely no idea if or how it could have been avoided.

    All things considered, I have very little sequelae from the 3 surgeries. They seem to have landed me, thankfully, cancer free, and mostly I have dealt all right with the diagnosis of vulvar melanoma and all the followup and scans. I have not thus far had to deal with radiation or immunotherapy, and for that I can only be grateful. I remain active, I raise my sons, and I work 65 hour work weeks, so all in all, at almost 6 years out, not too bad.

    I haven't been back to the forum in a few months, but tonight, for the first time in a long time, as I re-read back over this thread, I asked myself if I would have done any of this differently. Do I have any regrets? And I don't. And I would still want to write my original posts just the way I wrote them, and though I realize ultimately we all have to decide, after we are fully informed of the risks and benefits, what is right for us, I would still wholeheartedly encourage you to have the surgery rather than die from the disease. If you have access to a major cancer center, go there, and if you have access to a melanoma specialist, better yet. I did not even know about these things, and yet I was extraordinarily fortunate in my home town to find an an incredibly skilled, compassionate, and expert GYN-ONC surgeon who was more than capable of performing these surgeries and rendering me disease free.

    And if you are wondering if it is possible to still be alive and going strong 5 years and 8 months after being diagnosed with vulvar melanoma, yes, it is. : ) And that is the main message I send tonight, with blessings and wishes for health and happiness to you.

    For anyone facing vulvectomy, please know I am here if you ever need to reach out.

    Wishing you blessings and good health,

    Last edited by CheriD; 01-31-2019 at 11:08 PM.
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  2. #12
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    A true survivor! All cancers are horrible, but vulvar and vaginal mucosa melanoma are diabolic. The fact that you are here despite the odds has certainly helped more than you know. Certain cancers, because of their location, are difficult to talk about, but you have overcome that, which is admirable. As to all of the "post" issues, we may be the walking wounded, but hey, we're walking! And oh, there is so much more to life than we thought - but we must be alive to experience it and even more so, we must be alive to have complaints.

    Great to hear from you.


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