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.

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 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.

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)

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.

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)

How often do you have flare ups & use clobetasal ?

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 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?

bobette1 | @bobette1 | Apr 27 7:13pm

In reply to @andwho "How often do you have flare ups & use clobetasal ?" + (show)

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

andwho | @andwho | Apr 28 7:34am

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

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)

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!

andwho | @andwho | May 8 6:22pm

Any helpful suggestions?

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)

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!

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)

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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