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Vulvar Melanoma

mh1229
Posts: 22
Joined: May 2010

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!

Cbeth
Posts: 1
Joined: Jul 2011

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
Posts: 1
Joined: Oct 2016

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
Posts: 1
Joined: Jul 2017

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....

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