Vulvar Melanoma

mh1229
mh1229 Member Posts: 22
edited March 2014 in Rare and Other Cancers #1
I am hoping to connect with others who have been there done that. Preferably those with vulvar melanoma in particular and not vulvar cancer.

I was diagnosed in January, Stage 3 with a large primary. I have been doing my homework and talking with my oncologist and I know the prognosis is not wonderful... or even good. I have done the surgeries and am doing adjuvant therapy. I feel like a recurance is not a matter of if, but when. I would love to talk with someone!

Comments

  • Cbeth
    Cbeth Member Posts: 1
    #2
    Vulvar Melanoma
    I was recently diagnosed with vulvar melanoma. I had a radical vulvectomy and discection of the right groin lymph nodes. I've been told that my type of cancer is very agressive and at a high risk of reoccurence. i will be starting immunotherapy with Interferon in a few weeks. I'm scared of the side effects and even more scared of reoccurence.
  • Mountain gal
    Mountain gal Member Posts: 1
    #3
    My experience with vulvar melanoma

    I had always been very healthy until I was diagnosed with vulvar melanoma almost two years ago. Then I found how difficult it is to navigate through our health care system. Rather than reliving my difficulties, I try to focus on the successes. The doctor said I was fortunate to find the cancer so early (stage II). I had a radical vulvectomy and removal of lymph nodes on the left groin. The oncologist recommended Interferon treatments. However, I got a second opinion and was told there was little evidence that Interferon would help. The cancer quickly spread to the right groin, liver and spleen (stage IV) and I had a second surgery to remove over 30 lymph nodes from my right groin and abdominal area. It continued to spread until I began immunotherapy with Yervoy and Optivia. I had to stop after 4 treatments because of negative side effects, but the results were miraculous. The cancer is still present, but it is greatly reduced And has stabilized. Now, I am focusing on exercise and diet so my immune system will continue to fight the cancer.

    This has been an incredible journey and my friends and relatives have provided the strength I need to fight the cancer. Because vulvar melanoma is so rare, the doctors cannot provide a lot of advice. I would like to share my experience with other women in need of support.

  • Iuli82
    Iuli82 Member Posts: 1
    #4
    Vulvar melanoma

    Hi everyone!!

    I wonder if you're ok, as I see the first posts are from a few years ago.... I'm 35 years old, and today I just heard that my pathology results after the removal of my left-side vulvar melanoma confirmed there were cancerous cells in my Sentynel lymph node.... So stage 3, don't know yet the subtype.... I'll see a Melanoma specialist at Dana Farber in Boston in 2 days, to discuss the results and the "battle plan".... since it's such a rare diagnostic almost no info is available, so I'd aprecciate to be able to get in contact with any of you, even if only to know how you dealt with your cancer and how you've been....

  • jlp1016
    jlp1016 Member Posts: 2
    #5
    Iuli82 said:

    Vulvar melanoma

    Hi everyone!!

    I wonder if you're ok, as I see the first posts are from a few years ago.... I'm 35 years old, and today I just heard that my pathology results after the removal of my left-side vulvar melanoma confirmed there were cancerous cells in my Sentynel lymph node.... So stage 3, don't know yet the subtype.... I'll see a Melanoma specialist at Dana Farber in Boston in 2 days, to discuss the results and the "battle plan".... since it's such a rare diagnostic almost no info is available, so I'd aprecciate to be able to get in contact with any of you, even if only to know how you dealt with your cancer and how you've been....

    Vulvar Melanoma

    Hi how are you doing?  I just read your post from July and understand.  I am from Boston too, but have moved to Sarasota Florida in 2014.  I have VIN III with severe squamous cell carcinoma in situ along with HPV 16+.  I was misdiagnosed for years, but in 2014, the right gyno found it.  I was immediately sent to one of the best gyno-oncologists on the Planet!  All of this occurred at Mass General.  I had skinning of the r vulva/labia with Dr. AnnaKathryn Goodman at MGH in 2014.  It has come back 4 times now that I am in Florida and I have a great gyno here who has done the laser ablation.  I go tomorrow for colposcopy and biopsies, it's back on both sides, I know it all too well.  Not sure what will happen, not a lot of support groups and I may be in the wrong area.  When I saw vulvar melanoma, your post came up and I thought I would connect with you and just see how you are, and perhaps ask if you had VIN III sscc like me and it turned into full blown cancer.  Did you have any particular symptoms.  I'm just scared, long history of gyno cancer in my family, my mom, aunt, grammy, on and on.  Thank you for your time and really hope your doing well.  I miss Massachsetts!  We are still getting over the hurricane IRMA here.  Be well, please feel free to email me at jlpierce1016@gmail.com if you feel like chatting or need anything.

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