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 | May 14 10:11am
In reply to @wheaton "Yes, it was vulvar cancer. I had chemo and 35 radiation treatments. I also had a..." + (show)
@wheaton

Yes, it was vulvar cancer. I had chemo and 35 radiation treatments. I also had a vulvectomy a year and a half after finishing my treatment. I found another lump, which was only scar tissue. My onc/gyn did a vulvectomy as a precaution. This is more than likely why I still get occasional itching and irritation. I have started using Vagisil ointment and ph balanced wipes. It is helping a lot.
Ask your radiologist what they would suggest. They will know what is the best thing to use.
The best of luck with your upcoming tests, they are always a little nerve wracking 🤞.

Jump to this post

Does scar tissue cause itchiness & soreness or was it the vulvectomy?

REPLY
1 reply
andwho | @andwho | May 14 10:31am
In reply to @wheaton "Yes, it was vulvar cancer. I had chemo and 35 radiation treatments. I also had a..." + (show)
@wheaton

Yes, it was vulvar cancer. I had chemo and 35 radiation treatments. I also had a vulvectomy a year and a half after finishing my treatment. I found another lump, which was only scar tissue. My onc/gyn did a vulvectomy as a precaution. This is more than likely why I still get occasional itching and irritation. I have started using Vagisil ointment and ph balanced wipes. It is helping a lot.
Ask your radiologist what they would suggest. They will know what is the best thing to use.
The best of luck with your upcoming tests, they are always a little nerve wracking 🤞.

Jump to this post

Does scar tissue cause itchiness & soreness or is that from the vulvectomy?

REPLY
Trisher | @wheaton | May 14 5:15pm

Unfortunately, it’s hard to tell what is the specific cause. The whole area is now scar tissue.

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grandmagail67 | @grandmagail67 | May 14 7:59pm

Hi, I had surgery in December to remove Vulvar Cancer, so yes, it is a real thing. Sounds awkward, but glad to hear you're following up and getting rid of it. Recovery is sometimes more emotional than physical since it alters part of our essential female anatomy - no cancer is always, always the better choice. You'll likely have some itching afterwards. I often find just sitting on the edge of the tub and using a hand shower for a long, warm rinse - than sitting on a soft bath towel will help settle the area down. Good luck to you!

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grandmagail67 | @grandmagail67 | May 14 8:14pm
In reply to @andwho "Does scar tissue cause itchiness & soreness or was it the vulvectomy?" + (show)
@andwho

Does scar tissue cause itchiness & soreness or was it the vulvectomy?

Jump to this post

It may depend on whether or not you had an underlying condition such as lichen's schlerosis as to the effect of itchiness & soreness. Here's a couple of practical hints that helped me. Switch your underwear to 100% cotton boy-shorts for a while. No elastic leg openings or nylon to rub against that sensitive area. Don't wear jeans or pants with thick, or abrasive center seams more often than necessary. If you do, get a period pad to wear to cushion your "tender area". After you go to the bathroom, sit on the edge of the tub and use the hand shower for a warm rinse. Sit on a towel to pat dry. Use gold bond or medical powder to keep the area dry. If your skin is tight with scarring, use a scar reducing scream to soften the scar - which should cut down on pain and itching. Finally, get some anti-itch spray for sunburns and use that if the itching gets too bad. Steroid creams can sometimes be useful but talk to your doctor only if these other things don't work. I've been there - good luck!

REPLY
1 reply
andwho | @andwho | May 15 9:23am
In reply to @grandmagail67 "It may depend on whether or not you had an underlying condition such as lichen's schlerosis..." + (show)
@grandmagail67

It may depend on whether or not you had an underlying condition such as lichen's schlerosis as to the effect of itchiness & soreness. Here's a couple of practical hints that helped me. Switch your underwear to 100% cotton boy-shorts for a while. No elastic leg openings or nylon to rub against that sensitive area. Don't wear jeans or pants with thick, or abrasive center seams more often than necessary. If you do, get a period pad to wear to cushion your "tender area". After you go to the bathroom, sit on the edge of the tub and use the hand shower for a warm rinse. Sit on a towel to pat dry. Use gold bond or medical powder to keep the area dry. If your skin is tight with scarring, use a scar reducing scream to soften the scar - which should cut down on pain and itching. Finally, get some anti-itch spray for sunburns and use that if the itching gets too bad. Steroid creams can sometimes be useful but talk to your doctor only if these other things don't work. I've been there - good luck!

Jump to this post

Thank you for your help. Yes my vulvar cancer was a result of having lichen sclerosis which I had for years not knowing! I only wear cotton underwear. I have boy shorts also. Have only been wearing loose sweat pants, no leggings!
My groin area is very dry & itchy. I’ve tried everything from vulvar cream, cortisone cream, barrier cream, aquaphor & Vagisil. Vagisil helps & calms the itching down but not sure if this is the thing to use!
The itchy soreness has come & go the whole time!
Come August I will be 2 years past finishing radiation. Is this the new normal for me? The doctors don’t really tell you what to expect after treatment is over. (Side effects)
Your thought & suggestions again would be greatly appreciated!!

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