Vulvar Cancer: Anyone else?

I would like to add that I’m 46yrs old, married and have 2 daughters. I don’t understand why I may have this because I have never has a STD or anything. I’m so perplexed by it all.
Thanks for listening!
Alice

Hello Alice. I have no similar experience, but I want to offer my best wishes to you in getting the answers you need and finding others with similar experiences.

Thank you Samaco, I am still waiting for the results.

Hi @ali1974 Alice,
I'm wondering what you found out from the results of the biopsy. Did it comes back positive for vulvar cancer?

Hi,
I am new to this site and trying to find other women who have had or have vulvar cancer. I realize it is rare and there is not much information on it, but I am currently still having long term effects from radiation and was wondering if anyone would be willing share info. Thanks, Trish

Hi Trisher, I was just about to head off to bed when I saw your message. Let me start by saying welcome. Vulvar cancer is rare. But there are several members who have had radiation for vulvar or other gynecological cancers that you can connect with here like @ali1974 @samaco @naturegirl5 @vsinn2000 @stoligirl and @miriam57

You may also be interested in reading this older discussion:
- Radiation therapy for vulvar cancer https://connect.mayoclinic.org/discussion/radiation-therapy-for-vulvar-cancer/

Trisher, how long ago did you have radiation? May I ask what long-term radiation effects you're still experiencing?

Hi Colleen, thank you for your response and suggestions and links, I really appreciate it. I finished 35 radiation treatments in December 2018. I am still experiencing diarrhea, that I have no control over. My radiologist said I would probably have it forever, due to my reaction to the radiation.

Hi,

I am new to the site. I want to get some thoughts on how others have handled vulvar biopsies. I had an appointment with a nurse practitioner in Sept 2023 for a painful area on my vulva. She said she could not do a biopsy but I should schedule an appointment with the doctor to have a biopsy done. I met with the doctor on 10/24 and instead of a biopsy right then, she wanted to do a surgery which would have been another month to remove the whole inflamed area for a biopsy. I initially said yes, but I now have an appt. this week to do the biopsy. I just can't wait another month to determine if I have cancer. I would like to know the process that others have gone through. Did you get a biopsy first and then see an oncologist or cancer team? I don't want to wait to have surgery, find out it is cancer and then have more surgery later down the road. I have always heard that it is better to have a gyno-oncologist do these types of surgery. I am just pretty confused on the best path to take. Would love to hear thoughts on this.

Hello Tally9004. I was diagnosed with Paget’s of the vulva in August 2023. I would absolutely see a gynecologist before considering surgery. A biopsy is necessary as well to determine if the growth you are seeing is cancer and what type it might be.
If you do a search here for Paget’s disease of the vulva, you will see others that have posted about their journey. Yours may not be Paget’s, but there is good information there as well.
Good luck to you.

Hi Tally,
Welcome! I was diagnosed with vulvar cancer in April 2018. The first thing the gynecologist did after the exam was a biopsy. She then sent me to an oncologist/gynecologist. After meeting with the specialist we decided on a treatment plan. It may be helpful to see if you have a oncologist/gyn in your area. The best of luck. Let us know how you’re doing.