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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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susanpagets | @susanpagets | Apr 4, 2025
In reply to @ali1974 "I would like to add that I’m 46yrs old, married and have 2 daughters. I don’t..." + (show)
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I would like to add that I’m 46yrs old, married and have 2 daughters. I don’t understand why I may have this because I have never has a STD or anything. I’m so perplexed by it all.
Thanks for listening!
Alice

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You don't have to have an STD to get vulva cancer. Mine is called Paget's disease,which is cancer. I have had one surgery and most recently using Imiquimod, which is a cream that is a topical chemo. I have had some good results with that. God bless you.

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bobette1 | @bobette1 | Apr 4, 2025
In reply to @andwho "Anything OTC?" + (show)
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Anything OTC?

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I don't have anything over the counter but I bet you could use Motrin for swelling and there must be some sort of steroid cream OTC. maybe ask a pharmacist. Sorry I can't be of more help.

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andwho | @andwho | Apr 3, 2025
In reply to @andwho "Anything OTC?" + (show)
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Anything OTC?

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Anything OTC??

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andwho | @andwho | Apr 1, 2025
In reply to @bobette1 "Yes I use clobetasol for flare ups." + (show)
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Yes I use clobetasol for flare ups.

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Anything OTC?

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bobette1 | @bobette1 | Apr 1, 2025
In reply to @andwho "Thank you for responding & sharing. Do you use any creams or anything to help?" + (show)
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Thank you for responding & sharing. Do you use any creams or anything to help?

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Yes I use clobetasol for flare ups.

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andwho | @andwho | Mar 31, 2025
In reply to @bobette1 "I had surgery/chemotherapy/radiation for vulvar cancer and finished treatment in March 2023. I still suffer from..." + (show)
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I had surgery/chemotherapy/radiation for vulvar cancer and finished treatment in March 2023. I still suffer from sensitivity down there and am told this is my new normal. I have found the donut cushions help with sitting. I hope this helps. Boette

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Thank you for responding & sharing. Do you use any creams or anything to help?

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bobette1 | @bobette1 | Mar 31, 2025
In reply to @andwho "Thanks for your help. I did not expect to still be experiencing itchiness tenderness & soreness...." + (show)
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Thanks for your help.
I did not expect to still be experiencing itchiness tenderness & soreness. I guess I’ll never be the same down there & this is the new me. Do your doctors tell you this normal?

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I had surgery/chemotherapy/radiation for vulvar cancer and finished treatment in March 2023. I still suffer from sensitivity down there and am told this is my new normal. I have found the donut cushions help with sitting. I hope this helps. Boette

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andwho | @andwho | Mar 30, 2025
In reply to @wheaton "I still experience itching and discomfort 6 years after radiation. Believe or not, baby wipes help!..." + (show)
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I still experience itching and discomfort 6 years after radiation. Believe or not, baby wipes help! I stick with natural, unscented type. I also just discovered Wellness Love ph balanced vulvar wipes. I picked them up at Target, but they are widely available at other stores. Good luck and let us know if find something that helps.

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Is the itchiness, soreness & tenderness normal after all that time ? I am experiencing the same after almost 2 years, is this the new normal?
Wasn’t expecting to still be tender down there!

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lrcg | @lrcg | Mar 29, 2025
In reply to @andwho "Thanks for your help. I did not expect to still be experiencing itchiness tenderness & soreness...." + (show)
Profile picture for andwho @andwho

Thanks for your help.
I did not expect to still be experiencing itchiness tenderness & soreness. I guess I’ll never be the same down there & this is the new me. Do your doctors tell you this normal?

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There is a private fb group called myempd, get on it, it is a wealth of information. It has changed my life to have the support with others. You will hear some inspirational stories that will encourage you to keep seeking answers. This is what is helping me. I see a new Dr this week. I ebb and flow with my progress. As to what Drs tell you...they just dont know and everyone seems to be a bit different.

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andwho | @andwho | Mar 29, 2025
In reply to @lrcg "I have Pagets but so far no other cancer. A biopsy will tell you for sure...." + (show)
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I have Pagets but so far no other cancer. A biopsy will tell you for sure. I first has excision of my right labia which I dont recommend. When it cane back I used Imiquiod for 3 months it worked but Pagets keeps popping up. Finding a doctor that will try something besides surgery in nearly impossible. Maybe you have lichen sclerosis ? Good luck with it all. I tell myself it could be worse.

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Thanks for your help.
I did not expect to still be experiencing itchiness tenderness & soreness. I guess I’ll never be the same down there & this is the new me. Do your doctors tell you this normal?

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