Vulvar Cancer: Anyone else?

Hi, I am scheduled for a biopsy this Thursday. I will keep you posted. I am glad that this group is here because this type of cancer is in such a private and personal part of the body and the comments steady my emotions.

I finished radiation in March and still feeling effects from it. Someone mentioned diarrhea that they can't control. I don't have that problem but because of my incision is so close to my anus that I have to take miralax every couple days because every time I poop I bleed just slightly nothing too serious. And also I'm having trouble with my bladder like I have to wear a thin pad every day because a little bit of urine sneaks out. I am going to start pelvic physical therapy in January and hoping that helps.

Welcome to the club. I too had vulvar cancer. I was able to have a biopsy done in a matter of days. I am so sorry they can't do it without surgery. One thing that I didn't realize until later while I waited for surgery, is that I should have stayed away from sugar. I craved it and ate it and my tumor was huge on the outside by the time I had my surgery. Wishing u the best of luck. How are u feeling otherwise? It is still fresh in my mind ...I had surgery last November and then did 6 weeks of chemo and radiation that I just finished in March. I'm beginning to feel like myself again. Please keep in touch and let us know how things are going.
Bobbi

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.

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,

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.

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