Do they take the clitoris when they do vulvar cancer surgery?

@colleenyoung Thank you for posting this. I am trying to find support for an elderly relative suffering with Paget's Disease of the Vulva. She had a vulvectomy is 25 but the lesions weren't entirely eliminated and she is suffering so much from both returning lesions and the after effects of the surgery. Her "choice" is to use the cauterizing lotion (so painful) or just tolerate the lesions (also painful). I realize this forum is not for diagnosis but I am desperately trying to help her find a specialist who can help her find some comfort measures at the very least. Her gynecologist/oncologists just hands her the lotion and doesn't seem to understand what she is enduring. I read about Dr Cliby on this forum and wonder if she could have a telehealth consultation with him, or if he might provide referrals-- she is on the East Coast and mobility is an issue. I can't believe she has to endure this pain. Thank you.

@westnp1 @redd4848 @ftwtxgirl and everyone else following this discussion, I want to also let you know about the monthly Zoom support group for women with gynecological cancers. It is facilitiated by a Mayo Clinic oncology social worker every 2nd Monday of each month from 5:30 p.m. – 6:30 p.m. Eastern time. The next meeting is March 13 and all are welcome. See more info here:
- GYN Support Group-Women of S-Teal Jax https://connect.mayoclinic.org/event/gyn-support-group-women-of-s-teal-jax-5/

@kanderstag, did you see the questions @sphillips1952 has for you? How is your treatment with immunotherapy going?

Please let us know the details of your immunotherapy. Is it like my IV infusion once a year for Osteoporosis? Just set u up in a comfortable chair and blanket for about an hour being hooked up to the IV? Thanks so much, I have a lot of ground to cover.!

Please let us know the details of your immunotherapy. Is it like my IV infusion once a year for Osteoporosis? Just set u up in a comfortable chair and blanket for about an hour being hooked up to the IV? Thanks so much, I have a lot of ground to cover.!

Hello, I've been dealing with vulgar cancer off and on since 1999. I had partial vulvalectomy done, in pieces, over 18 surgeries since then with my last big one in 2013. I've been clear since at my yearly appts. A couple of years ago we moved, so I lost my doctor of 17 yr and had to wait to see another. I saw her yesterday and am scheduled for day surgery to have some biopsies done, one of which is right on the tip of my clitoris. I've managed to save it over the yrs, but I guess I can no longer. I am very nervous over the cancer taking that area. I've lost so much feeling down there I don't want to lose it all. I've managed to deal with it all over the years and have had counselling and was even a part of a support group set up by my doctor for a couple of yrs till they shut it down. I miss that.

@kanderstag I'd like to add my welcome to this Support Group and to this discussion.

Event though I was well past menopause when I had a radical hysterectomy (endometrial adenocarcinoma) that removed uterus, cervix, ovaries and fallopian tubes in 2019 I felt a real sense of loss. Of course I was no longer fertile but that wasn't the point. So while I don't share your diagnosis I do understand the loss. That can be the case no matter what our ages are.

When do you meet with the radiation oncologist? I am hoping you have a good outcome with immunotherapy.

Hi, new to the group.
Dx with Stage 11C Vulva Melanoma in December, 2022. PET scan negative and sentinel nodes negative x 2. Large R side tumor near clitoris. Had radical vulvectomy in January - path showed tumor was 14mm deep with positive margins so had another surgery yesterday with wider excision and removal of clitoris. Even though I’m 79, I’m feeling down about the removal. Feels like a significant loss to me.
I will start immunotherapy next week and consult with a radiation oncologist also next week to see if that treatment is effective at this point.
I appreciate being able to join this group as I don’t know anyone personally going through this.

I had stage 3 squamous cell carcinoma. It was in the bartholin gland. They removed 6 lymph nodes from the left and 2 from the right. You are the first person I have talked to that has has a similar surgery. How did you find it and were you using a fem ring?