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.

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

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Profile picture for Trisher @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 🤞.

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

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Profile picture for Trisher @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
Profile picture for andwho @andwho

Was your diagnosis vulvar cancer? 6 years you still experience itchiness & soreness? Do they say that is normal? I have an appt with my radiologist & pet
MRI scheduled in June. I’ll be asking a lot of questions.
Do you recommend using anything in particular?
I’ve tried many different things but not sure if it is causing more irritation!
What can you recommend?
Thanks for any help!

Jump to this post

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 🤞.

REPLY
Profile picture for Trisher @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

Was your diagnosis vulvar cancer? 6 years you still experience itchiness & soreness? Do they say that is normal? I have an appt with my radiologist & pet
MRI scheduled in June. I’ll be asking a lot of questions.
Do you recommend using anything in particular?
I’ve tried many different things but not sure if it is causing more irritation!
What can you recommend?
Thanks for any help!

REPLY

Any helpful suggestions?

REPLY
Profile picture for Trisher @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

I have tried many things when the itchiness & tenderness flare up. Not sure what works & whAt doesn’t!
I use aquaphor, lidocaine, silvadene, vagisil & hydrocortisone. Not all at the same time of course !
Any other suggestions out there? Sometimes the itchiness drives me 😠 mad!

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Yes my flare up’s come & go about that often also!

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Profile picture for andwho @andwho

How often do you have flare ups & use clobetasal ?

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It just depends.....flare ups come and go. Depends on how active I am. At least once a week.

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Profile picture for leahchawkins @leahchawkins

Thanks! I’m nervous … as we all are. I’m scheduled for a breast MRI on Sunday night due to a hot spot showing up on my PET scan, so there’s that.😊 I appreciate you reaching out.

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@leahchawkins I can understand the nervousness. I am almost loathe to say this but really anxiety seems pretty normal to me given the circumstances. No one wants to go through this and who wouldn't be very nervous? Is the "hot spot" that showed up in your breast on the PET scan something new you didn't know about? I'll be thinking of you and hoping that the breast MRI is negative for disease. Let me know what you find out, OK?

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