Nov 21, 2012 - 12:29 am
I'm new here but am trying to find a community of people who have experience with vulvar cancer. My mother was diagnosed with Stage 4 vulvar cancer about two months ago. When it was diagnosed, her cancer was in her vulva, groin lymph node and skin. Later, her physicians found a small tumor in her shoulder, which was treated with radiation.
Her gynecologic oncologist explained that surgery wasn't an option given the extent of the cancer (I believe because it is in the lymph node and skin of her groin/hip). Her medical oncologist therefore recommended treatment with cisplatin and navalbine, which we used for about 2 months. During that time, my mom had good days and rocky days. Several weeks in, we had to pause chemotherapy for one week to address the tumor in her shoulder with radiation, and her shoulder is starting to feel better.
We have since gone back on chemotherapy and she feels amazing. However, we recently visited the medical oncologist who says that the tumors in her groin area are larger. She too is somewhat confused by the fact that my mother has felt really very good -- she still is sore on her side and in her vulva area, but, thank God, has had great energy and relatively low pain levels. It really is remarkable how much better she's been over the course of the pat week or two. However, her physician said that she couldn't disregard the increase in tumor size between weeks, so we have switched chemotherapy drugs to taxol and carboplatin.
Does anybody have experience with Stage 4 vulvar cancer they might be willing to share? Are there any specific physicians or hospitals that have specific or special experience treating this particular condition? We're remaining positive, having faith and hope, but would like to look for second (or third) opinions and aren't sure where to start for a rare cancer like vulvar cancer. Thank you for any help you may be able to provide!