Vulvar Cancer Support Group
Cancer of the vulva (also known as vulvar cancer) most often affects the inner edges of the labia majora or the labia minora. If you or someone you know has been diagnosed with vulvar cancer, use this community to talk about your experiences and gain support through other people going through a similar struggle. You're not alone
Hi all,
About a month ago, I felt something on my left labia-- managed to have a look; a white lesion. Scheduled with my family practice-- she sent me to GYN, who biopsied. The biopsy came back as Vin 3, and I was then referred to GYN oncology.
When I saw the Gyn Oncologist, she looked at the area, offered several options, but said she would recommend a wide area local excision. Since it was too close to the clitoris, however, she said she might not get clear margins. (We both agreed my little primary bit needed to stay!) After the surgery, if a visual lesion was left, then aldara; if microscopic, just observation. That surgery is scheduled for May 15.
In the meantime, I did a bit of reading and from recommendations that I could find, I SHOULD have a full exam of the entire area including vagina with either culposcopy or a vinegar wash and visual check as well as another PAP; vin 3 is often multicentric/multifocal. Just as background, I'm 62; my last pap was a year ago and was HPV negative, so at that time, my family practice said no need to have ongoing vag exams. In all three visits, the more extensive exam was neither suggested, nor done.
So... I called the oncologist office back and asked. I felt a bit like my onc doc was humoring me (not a good feeling!) -- but she said she could either do it at the time of the surgery or I could call and schedule with the GYN that I'd seen. I opted for having her do it at the time of surgery, but after thinking about it-- that seems a little bizarre. So, I'm asleep and she finds something? Does she biopsy it then, and if MORE vin, schedule another surgery? Does she hack it out with the 1 cm margins and if it's nothing, oh well?
I'm not feeling confident with my care at this point but really don't want to delay surgery-- this thing needs to go!
So... I wanted to throw this out there-- for those who had a diagnosis of VIN 3, did you receive a more complete exam without asking? Am I being too skeptical?
I'm not in the VIN 3 category, but I'm thinking of you and keeping you in my prayers as you head to surgery on Monday. I've had 2 partial vulvectomies due to squamous cell carcinoma, along with a hysterectomy and removal of lymph nodes. I'm 65; my surgeries were in 2010 & 2015. In 2016 I was diagnosed with squamous cell carcinoma again(urethra), and this time I had chemo and radiation for 3 months. I've learned a lot from all of this, mostly: we have to be our own health advocates! So, if you need information or have questions, be sure to ask.ask, ask! Also, being positive is huge!! I wish you the best; please update on this website after your surgery to let us know how you're doing. God bless--hugs!
I had surgery (wide excision) on May 8 for VIN 3. The margins were clear and the pathology showed no cancer cells. Yay! However, my condition was close to the urethra, so the margins are less clear because they did not want to cut that area.
I hope your surgery went well. The recovery is somewhat painful and SORE! But it's been almost two weeks, and I'm slowly healing. Best wishes. I hope to discuss recovery stories on this group, just for moral support!