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

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

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)
@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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1 reply
andwho | @andwho | Mar 18 8:22am

Does anyone still experience itchiness & soreness since finishing their radiation treatment?
I finished my treatment in August 2023 for vulvar cancer. Are these late side effects of skin toxicity?

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Trisher | @wheaton | Mar 25 1:11pm

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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1 reply
lrcg | @lrcg | 6 days ago
In reply to @andwho "I was diagnosed with vulvar cancer stage 1b in May 2023. Not a candidate for surgery..." + (show)
@andwho

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??

Jump to this post

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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1 reply
andwho | @andwho | 3 days ago
In reply to @lrcg "I have Pagets but so far no other cancer. A biopsy will tell you for sure...." + (show)
@lrcg

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.

Jump to this post

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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2 replies
lrcg | @lrcg | 3 days ago
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?

Jump to this post

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 | 2 days ago
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.

Jump to this post

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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bobette1 | @bobette1 | 1 day ago
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?

Jump to this post

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 | 1 day ago
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

Jump to this post

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

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1 reply
bobette1 | @bobette1 | 20 hours ago
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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