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.
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.
@kanderstag, you're right to acknowledge this loss. I know that @redd4848 and @ftwtxgirl will understand this first hand and are willing to share their experiences too.
Kanderstag, this is all so recent for you, recovering from surgery, sense of loss and turning around to get ready to talk about future treatment of immunotherapy and radiation. You must have lots racing through your head. Feel free to let it all out here. Ask questions and then ask some more.
@kanderstag, you're right to acknowledge this loss. I know that @redd4848 and @ftwtxgirl will understand this first hand and are willing to share their experiences too.
Kanderstag, this is all so recent for you, recovering from surgery, sense of loss and turning around to get ready to talk about future treatment of immunotherapy and radiation. You must have lots racing through your head. Feel free to let it all out here. Ask questions and then ask some more.
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?
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.
@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.
@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.
Thank you for sharing and for your support. Appreciated.
I see the radiation oncologist Friday and my first immunotherapy infusion is next Monday- trying to stay positive. Thanks again and I definitely share your sense of loss!
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.
WOW, that’s a LOT of surgeries! So much. Great info for so many issues. I’m trying to get different scenarios to see if they're things
I need to be doing, as far as opinions. How did u come to have so many surgeries, if u don’t mind me asking, or if it’s too personal:(.
You are mighty brave, and I know you will be a blessing to many others.🙏
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.!
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.!
Sorry I didn’t see this query sooner. Yes it sounds like immunotherapy infusion is just like you described. My infusions are every 4 weeks. Second one tomorrow. Good luck with your treatment!
Connect
Connect
Like
Helpful
Hug
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.
-
Like -
Helpful -
Hug
5 Reactions@kanderstag, you're right to acknowledge this loss. I know that @redd4848 and @ftwtxgirl will understand this first hand and are willing to share their experiences too.
Kanderstag, this is all so recent for you, recovering from surgery, sense of loss and turning around to get ready to talk about future treatment of immunotherapy and radiation. You must have lots racing through your head. Feel free to let it all out here. Ask questions and then ask some more.
-
Like -
Helpful -
Hug
1 ReactionThank you for your support of my feelings. It really helps!
-
Like -
Helpful -
Hug
1 ReactionDid u see yr GYN or Specialized Oncologist?
@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.
Thank you for sharing and for your support. Appreciated.
I see the radiation oncologist Friday and my first immunotherapy infusion is next Monday- trying to stay positive. Thanks again and I definitely share your sense of loss!
WOW, that’s a LOT of surgeries! So much. Great info for so many issues. I’m trying to get different scenarios to see if they're things
I need to be doing, as far as opinions. How did u come to have so many surgeries, if u don’t mind me asking, or if it’s too personal:(.
You are mighty brave, and I know you will be a blessing to many others.🙏
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.!
@kanderstag, did you see the questions @sphillips1952 has for you? How is your treatment with immunotherapy going?
Sorry I didn’t see this query sooner. Yes it sounds like immunotherapy infusion is just like you described. My infusions are every 4 weeks. Second one tomorrow. Good luck with your treatment!