Squamous Cell Vulvar Cancer: Who out there has this cancer?

8 years ago. They gave me a 40% prognosis- don't believe them! I started radiation and chemo about a month after surgery. Radiation was every day for 6 weeks. Chemo was about 4 treatments.

And I wasn't too tired until the end!

We're any of you using a fem ring? I think that what caused my cancer but i cant prove it.

I did not use a fem ring.

westnp1 Can u tell me how you got thru the radiation when everything is sore, inflamed and burnt. To try and go to the bathroom is horrible. Still have 6 radiation and 2 chemo to go.

They gave me a medical healing salve and it's was good. I was not burnt until the end of the tx.

Hi, Annie..have you tried any pain relief cream? I started with Neosporin w/pain killer in it..but I ended up getting a script from my Dr for lidocaine..spendy way to get it tho, amazon has versions of it for cheaper. I had lived with a growing tumor on the left side of my Vulva for over 10 years. I knew what it was and knew what caused it but I didn't have insurance, then it started really growing (embarrassment kept me from going in at that point, I was also in denial. I figured that it wasn't really gonna happen...fueled by thinking..I'm SPECIAL..I ALWAYS scooch by trouble at the last minute because of crazy chick luck. First time in my 54 years that I didn't side-step trouble in time to avoid falling face first in this mess ). I'm stubborn, kept it hidden from everyone around me until about 5 months ago..it began changing..and it hurt. Sitting was uncomfortable. Just to go the bathroom I had to put lidocaine on the tumor (it burns pretty bad then numbs it . .it's not that bad tho if u put just a tiny bit on your finger..touch a spot u want the pain to dull and just hold it til it doesn't burn..it numbs a small area around it a bit too..so it doesn't hurt like it would if u just tried to rub it on like lotion. I couldn't keep quiet enough during trips to bathroom to keep it hidden any more. I was also having shock sensations down my leg. I finally broke down and went to a clinic. I don't recommend waiting like I did...not the smartest thing I have done. Once I had the biopsy..it woke the beast and the pain was enough to make me follow through I HAD to get that thing off me. The doctors fast tracked me through appointments...and Radical partial vulvaectomy was done (I am still waiting for the last of my stitches to disappear) took my clit in the deal, and I'm still swollen..not sure what the end result will look like..BUT I'm not the least bit concerned with THAT now.....I want to find out from someone beyond this point....and find a way to make a decision about treatment...ugh. Good luck! Hope the cream works for you...also, sitting less helps. I lean over the back of my office chair..it's easier on the booty if you have a surgery like I did too. I still do a lot of standing and walking. Good luck

Hi,
I was diagnosed with squamous cell carcinoma of vulva with metastasis to sentinel lymph node January 2023. I had a modified radical vulvectomy March 2023. Pet scan showed not more tumors after surgery. Contemplating full lymphadenectomy or entering a clinical trial (Groins V III). Can anyone give me there thoughts?
Thanks!

I have this cancer. I had surgery 4 weeks ago..partial radical vulvectomy & illingual. Stage IIIb. Am meeting with radiation oncologist this week to go over additional radiation/chemo treatment.

Hi @cjp930
I was diagnosed stage III a. And had surgery about 6 weeks ago. While I can’t offer any advice I can offer support. Meeting with my doctor today to discuss additional surgery or clinical trial. Good luck meeting with your team. Let me know how things are going.