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Vulvar Melanoma

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!

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.

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