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.

Mentor
Helen, Volunteer Mentor | @naturegirl5 | Apr 24 5:43pm
In reply to @leahchawkins "I have squamous cell vaginal cancer due to HPV. In 1995 I had a total abdominal..." + (show)
@leahchawkins

I have squamous cell vaginal cancer due to HPV. In 1995 I had a total abdominal hysterectomy due to HPV…. And it’s back.
Surgery is not an option as the tumor abuts my urethra and there is not enough tissue to obtain clear margins. Don’t want a permanent urostomy bag, so I have an appointment April 25 with radiation oncology to discuss radiation and chemotherapy and chemoradiation. Possibly 6 weeks….

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@leahchawkins I somehow missed your post of last week that you have an appointment coming up tomorrow in radiation oncology. I'll be thinking about you tomorrow. I am hoping that the appointment helps you figure out the approach that will work the best for you in your life. I realize these are very big decisions.

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1 reply
leahchawkins | @leahchawkins | Apr 25 6:41am
In reply to @naturegirl5 "@leahchawkins I somehow missed your post of last week that you have an appointment coming up..." + (show)
@naturegirl5

@leahchawkins I somehow missed your post of last week that you have an appointment coming up tomorrow in radiation oncology. I'll be thinking about you tomorrow. I am hoping that the appointment helps you figure out the approach that will work the best for you in your life. I realize these are very big decisions.

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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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1 reply
andwho | @andwho | Apr 26 3:27pm
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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How often do you have flare ups & use clobetasal ?

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1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Apr 26 4:01pm
In reply to @leahchawkins "Thanks! I’m nervous … as we all are. I’m scheduled for a breast MRI on Sunday..." + (show)
@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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bobette1 | @bobette1 | Apr 27 7:13pm
In reply to @andwho "How often do you have flare ups & use clobetasal ?" + (show)
@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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andwho | @andwho | Apr 28 7:34am

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

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andwho | @andwho | May 8 4:41pm
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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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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andwho | @andwho | May 8 6:22pm

Any helpful suggestions?

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andwho | @andwho | May 13 1:47pm
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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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!

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1 reply
Trisher | @wheaton | May 14 8:53am
In reply to @andwho "Was your diagnosis vulvar cancer? 6 years you still experience itchiness & soreness? Do they say..." + (show)
@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!

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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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