1. < Gynecologic Cancers

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

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andwho | @andwho | Apr 4 3:21pm
In reply to @bobette1 "I don't have anything over the counter but I bet you could use Motrin for swelling..." + (show)
@bobette1

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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Thank you!

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susanpagets | @susanpagets | Apr 4 11:12am
In reply to @tally9004 "Hi, I am new to the site. I want to get some thoughts on how others..." + (show)
@tally9004

Hi,

I am new to the site. I want to get some thoughts on how others have handled vulvar biopsies. I had an appointment with a nurse practitioner in Sept 2023 for a painful area on my vulva. She said she could not do a biopsy but I should schedule an appointment with the doctor to have a biopsy done. I met with the doctor on 10/24 and instead of a biopsy right then, she wanted to do a surgery which would have been another month to remove the whole inflamed area for a biopsy. I initially said yes, but I now have an appt. this week to do the biopsy. I just can't wait another month to determine if I have cancer. I would like to know the process that others have gone through. Did you get a biopsy first and then see an oncologist or cancer team? I don't want to wait to have surgery, find out it is cancer and then have more surgery later down the road. I have always heard that it is better to have a gyno-oncologist do these types of surgery. I am just pretty confused on the best path to take. Would love to hear thoughts on this.

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I have Paget's disease, Vulvar cancer. I had a biopsy and was diagnosed, then sent to a Gynecologist/Oncologist. She did the surgery. Three years later, it is back. This time, we are using Imiquimod, which is a cream/cancer treatment. This was helpful. I go back in 3 months
Please let me know if I can help in any way. God bless you!

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susanpagets | @susanpagets | Apr 4 11:01am
In reply to @ali1974 "I would like to add that I’m 46yrs old, married and have 2 daughters. I don’t..." + (show)
@ali1974

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 10:24am
In reply to @andwho "Anything OTC?" + (show)
@andwho

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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1 reply
andwho | @andwho | Apr 3 3:49pm
In reply to @andwho "Anything OTC?" + (show)
@andwho

Anything OTC?

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Anything OTC??

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andwho | @andwho | Apr 1 1:04pm
In reply to @bobette1 "Yes I use clobetasol for flare ups." + (show)
@bobette1

Yes I use clobetasol for flare ups.

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Anything OTC?

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2 replies
bobette1 | @bobette1 | Apr 1 11:21am
In reply to @andwho "Thank you for responding & sharing. Do you use any creams or anything to help?" + (show)
@andwho

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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1 reply
andwho | @andwho | Mar 31 9:49pm
In reply to @bobette1 "I had surgery/chemotherapy/radiation for vulvar cancer and finished treatment in March 2023. I still suffer from..." + (show)
@bobette1

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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1 reply
bobette1 | @bobette1 | Mar 31 5:39pm
In reply to @andwho "Thanks for your help. I did not expect to still be experiencing itchiness tenderness & soreness...." + (show)
@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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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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1 reply
andwho | @andwho | Mar 30 8:17am
In reply to @wheaton "I still experience itching and discomfort 6 years after radiation. Believe or not, baby wipes help!..." + (show)
@wheaton

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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