1. < Gynecologic Cancers
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Vulvar Cancer: Anyone else?

Posted by ali1974 @ali1974, Nov 12, 2020

Hello:
I have posted on other discussion group about my struggle with my health, previous cancer stories and concerns for my genetic history. I can’t seem to get a break. I just had a biopsy today to rule out vulvar cancer. I honestly didn’t even know there was such a thing. Has anyone been diagnosed with this and is it more common than what I have been reading?
I am BRCA2 and MSH6 positive. 2 time breast cancer and ovarian cancer survivor I have lived a drug and alcohol free life it just doesn’t end!

Alice

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

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Helen, Volunteer Mentor | @naturegirl5 | Feb 25, 2025

@echozepher Welcome to Mayo Clinic Connect. This is a very active Discussion in our Gynecological Cancers Support Group and so I know that you will hear the experiences from others in this Discussion and they will answer your questions.

Your surgery was just yesterday? How are you feeling today?

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echozepher | @echozepher | Feb 25, 2025

Hello,
I had surgery yesterday in Walnut Creek, California Kaiser for an INGUINAL SENTINEL LYMPH NODE BIOPSY - Bilateral - GroinVULVECTOMY RADICAL.
My pet scan showed negative for any disease in lymph nodes.
I am just wondering if anyone has had surgery and everything looks good and then it metastasized to a different area and how long it took?

Also has anyone used immunotherapy instead of radiation?

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andwho | @andwho | Feb 25, 2025
In reply to @wheaton "I think we’re all trying to figure out our new normal. I do experience itching and..." + (show)
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I think we’re all trying to figure out our new normal.
I do experience itching and irritation. My dr was giving me a prescription for a yeast / fungal infection that helped. I have been using Vagisil and Monistat, both are over the counter and much cheaper and most important, they work.
I am also getting frequent UTI’s, which I never had before.
I still have to know where the restrooms are, but it’s a fantastic day when I realize I’ve been out for several hours running errands… and no “issues”! I definitely have learned to appreciate the little things.

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Were you itchy & irritated from a yeast/fungal infection? Is that why your doctor prescribed it?

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andwho | @andwho | Feb 25, 2025
In reply to @bobette1 "I suffer the same. I am 2 years out from surgery/chemo/radiation for stage 3 vulvar cancer...." + (show)
Profile picture for bobette1 @bobette1

I suffer the same. I am 2 years out from surgery/chemo/radiation for stage 3 vulvar cancer. I did have some lymph nodes removed too. Unfortunately my Dr said it is my new "normal". The cream does help some in the moment. Vulvar cancer is a form of skin cancer so I am glad they finally took a look at your mole. I pray for a successful surgery for you.

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What cream are you using & for what symptoms?
Thanks for any feedback.

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bobette1 | @bobette1 | Feb 25, 2025

I suffer the same. I am 2 years out from surgery/chemo/radiation for stage 3 vulvar cancer. I did have some lymph nodes removed too. Unfortunately my Dr said it is my new "normal". The cream does help some in the moment. Vulvar cancer is a form of skin cancer so I am glad they finally took a look at your mole. I pray for a successful surgery for you.

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andwho | @andwho | Feb 24, 2025
In reply to @susanpagets "I have a paget's disease of the vulva and had to have surgery No diapers involved...." + (show)
Profile picture for susanpagets @susanpagets

I have a paget's disease of the vulva and had to have surgery
No diapers involved. I don't know what that could be. And no this is not our fault. I am now using Imiquimod and feeling tired but hopeful to not have to have surgery again right now. And, every day is a new normal

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I was diagnosed with vulvar cancer stage 1b in may 2023.
I’ve been cancer free since but have suffered with a lot of soreness, tendeness. I now have a lot of itchiness & Inflammation. I saw my oncologist 2 weeks ago. She suggested vulvar cream but that is not helping. What is going on! Is this just another Side effect? Maybe pagers???

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susanpagets | @susanpagets | Feb 24, 2025
In reply to @komiskey10 "Thank you so much. The time for all of my tests is fast approaching and I..." + (show)
Profile picture for komiskey10 @komiskey10

Thank you so much. The time for all of my tests is fast approaching and I am extremely anxious. I have read so much about this cancer and most of what I have been reading is terrifying. I am comforted by the fact that I am not the only one to have faced this challenge. I was told I have lichen sclerosis, but now am not sure I do. I need answers and have to get this all straight in mind and try to accept what is happening.

Jump to this post

I have a paget's disease of the vulva and had to have surgery
No diapers involved. I don't know what that could be. And no this is not our fault. I am now using Imiquimod and feeling tired but hopeful to not have to have surgery again right now. And, every day is a new normal

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Helen, Volunteer Mentor | @naturegirl5 | Feb 24, 2025
In reply to @komiskey10 "Sorry for the confusion. I meant scans were positive for me. They were negative for disease..." + (show)
Profile picture for komiskey10 @komiskey10

Sorry for the confusion. I meant scans were positive for me. They were negative for disease in lymph nodes or other areas. The scans showed activity in my thyroid. I have cysts and nodules, but have been battling that issue for 10 plus years.... He had me send it to my endocrinologist. Pelvic MRI showed cysts on my ovaries and in my uterus. Thanks for asking.

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@komiskey10 So all good news for you. Congratulations that nothing new showed up in the scans.

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komiskey10 | @komiskey10 | Feb 24, 2025

Sorry for the confusion. I meant scans were positive for me. They were negative for disease in lymph nodes or other areas. The scans showed activity in my thyroid. I have cysts and nodules, but have been battling that issue for 10 plus years.... He had me send it to my endocrinologist. Pelvic MRI showed cysts on my ovaries and in my uterus. Thanks for asking.

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Helen, Volunteer Mentor | @naturegirl5 | Feb 24, 2025

@komiskey10 This all is good news. I’m curious, though. When you noted that the pelvic MRI and PET were “positive” did you mean No Evidence of Disease? In that case, the scans would be negative for disease. Did the scans shows anything?

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