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.
Colleen Young, Connect Director | @colleenyoung | Feb 21, 2023
@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/
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.
Hi @redd4848, I'm just seeing your message now. After such a long journey with so many surgeries, I can imagine how you've become "protective" of your clitoris. With it now being potentially under scrutiny, this must be hard to swallow.
How did the biopsies go? Have you had the results yet?
My tumor 3cm squamous cell carcinoma of the vulva along the upper left vulva with complete extension and invasion into the clitoris. had so it had to be removed during my surgery on 11/14/22…
partial radial vulvectomy surgery with bilateral inguinal sentinel lymph node mapping and biopsies, left inguinal lymphadenectomy. Let me know if you have any questions.
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?
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.
My tumor 3cm squamous cell carcinoma of the vulva along the upper left vulva with complete extension and invasion into the clitoris. had so it had to be removed during my surgery on 11/14/22…
partial radial vulvectomy surgery with bilateral inguinal sentinel lymph node mapping and biopsies, left inguinal lymphadenectomy. Let me know if you have any questions.
@monafone We are not medical professionals or surgeons that post here on Mayo Clinic Connect. So we cannot answer specific questions about surgery. We do provide support and help people such as yourself with information and to look at all of the resources available.
Here is information from the American Cancer Society on surgery for vulvar cancer. This information points out that surgeons are very careful about the quality of life and sexual function in their patients. Have you talked with your doctor about this?
My tumor 3cm squamous cell carcinoma of the vulva along the upper left vulva with complete extension and invasion into the clitoris. had so it had to be removed during my surgery on 11/14/22…
partial radial vulvectomy surgery with bilateral inguinal sentinel lymph node mapping and biopsies, left inguinal lymphadenectomy. Let me know if you have any questions.
@monafone We are not medical professionals or surgeons that post here on Mayo Clinic Connect. So we cannot answer specific questions about surgery. We do provide support and help people such as yourself with information and to look at all of the resources available.
Here is information from the American Cancer Society on surgery for vulvar cancer. This information points out that surgeons are very careful about the quality of life and sexual function in their patients. Have you talked with your doctor about this?
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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.
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Like -
Helpful -
Hug
5 Reactions@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/
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Like -
Helpful -
Hug
1 ReactionHi @redd4848, I'm just seeing your message now. After such a long journey with so many surgeries, I can imagine how you've become "protective" of your clitoris. With it now being potentially under scrutiny, this must be hard to swallow.
How did the biopsies go? Have you had the results yet?
-
Like -
Helpful -
Hug
1 ReactionI 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?
-
Like -
Helpful -
Hug
2 ReactionsHello, 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.
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Helpful -
Hug
1 ReactionWelcome, @ftwtxgirl. Your surgery is quite recent. So nice of you to join to offer support to @monafone as she prepares for vulvar cancer surgery.
@ftwtxgirl, are you or will be having additional treatment after surgery? How are you doing?
My tumor 3cm squamous cell carcinoma of the vulva along the upper left vulva with complete extension and invasion into the clitoris. had so it had to be removed during my surgery on 11/14/22…
partial radial vulvectomy surgery with bilateral inguinal sentinel lymph node mapping and biopsies, left inguinal lymphadenectomy. Let me know if you have any questions.
-
Like -
Helpful -
Hug
1 Reaction@monafone, just checking in to see how you are doing? When will you have surgery?
It depends on the extent the the cancer and required surgery. My doctor said he would try to keep it; and he did. And, it is functional.
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2 ReactionsWhat are your questions? I just had a vulvectomy a few weeks ago for vulvar cancer.
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1 Reaction