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.

lrcg | @lrcg | Mar 29 1:51pm
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.

REPLY
andwho | @andwho | Mar 29 11:41am
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?

REPLY
2 replies
lrcg | @lrcg | Mar 26 8:49am
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.

REPLY
1 reply
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.

REPLY
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?

REPLY
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.

Jump to this post

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??

REPLY
1 reply
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)
@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

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?

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

Feeling good. Not in any pain.

Jump to this post

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

REPLY
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)
@andwho

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

Jump to this post

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.

REPLY
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)
@bobette1

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.

Jump to this post

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

REPLY
View MoreView Less
Please sign in or register to post a reply.