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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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andwho | @andwho | Mar 4 11:47am
In reply to @juju67 "Hello Tally9004. I was diagnosed with Paget’s of the vulva in August 2023. I would absolutely..." + (show)
Profile picture for juju67 @juju67

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.

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I was diagnosed with vulvar cancer stage 1b in May 2023. Not a candidate for surgery had 32 rounds of radiation & 3 rounds if chemo. After 2 Pet/MRIs no sign of the disease. However I suffer from from late side effects.
Tenderness, itchiness & still need to be careful how I sit!
Since I am itchy wondering could this be the beginning of Pagets? What is this? I’ve heard it happens with must vulvar cancer. True??

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andwho | @andwho | Mar 2 4:03pm
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.

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Has anyone suffered with Extramammary pagets disease ? I had vulvar cancer stage 1b I. May 2023. Read it could come back as EMPD. Is that true?

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Helen, Volunteer Mentor | @naturegirl5 | Feb 26 4:59pm
In reply to @echozepher "Feeling good. Not in any pain." + (show)
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Feeling good. Not in any pain.

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@echozepher Oh, good. I'm glad to hear that. Considering that you just had surgery that's wonderful. Thanks for letting me know.

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Trisher | @wheaton | Feb 26 11:26am
In reply to @andwho "Were you itchy & irritated from a yeast/fungal infection? Is that why your doctor prescribed it?" + (show)
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Were you itchy & irritated from a yeast/fungal infection? Is that why your doctor prescribed it?

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Yes, it was a fungal infection. I am still getting them and currently using Vagisil. It is helping a lot. I have noticed when I have diarrhea episodes, it tends to get worse. Then it’s time for Greek yogurt for breakfast.
I have also discovered wearing “boy short” underwear helps a lot. I wore them going through radiation but have started wearing them again when I need to.

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andwho | @andwho | Feb 26 7:25am
In reply to @bobette1 "I was using a compounded cream of Lidocaine and silvadene cream. I really like that one....when..." + (show)
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I was using a compounded cream of Lidocaine and silvadene cream. I really like that one....when I asked for a refill they gave me clobetasol propionate ointment. Which is ok.

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What kind of symptoms do you have? I get a lot of itchiness. Thought lidocaine was a numbing cream & silvadene was for burns?

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echozepher | @echozepher | Feb 25 11:23pm
In reply to @naturegirl5 "@echozepher Welcome to Mayo Clinic Connect. This is a very active Discussion in our Gynecological Cancers..." + (show)
Profile picture for Helen, Volunteer Mentor @naturegirl5

@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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Feeling good. Not in any pain.

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bobette1 | @bobette1 | Feb 25 8:02pm
In reply to @andwho "What cream are you using & for what symptoms? Thanks for any feedback." + (show)
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What cream are you using & for what symptoms?
Thanks for any feedback.

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I was using a compounded cream of Lidocaine and silvadene cream. I really like that one....when I asked for a refill they gave me clobetasol propionate ointment. Which is ok.

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1 reply
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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Feb 25 6:25pm

@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 1:28pm

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 11:22am
In reply to @wheaton "I think we’re all trying to figure out our new normal. I do experience itching and..." + (show)
Profile picture for Trisher @wheaton

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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