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

@cjp930 So for 5 weeks you’ll have chemo and radiation on the first day of the week and then just radiation for the rest of the week? Is that how it will work? It’s an arduous schedule. When I had radiation (no chemo) for 5 weeks for endometrial cancer I decided to make “me” a first priority and do whatever I could to take care of myself. I did not have children at home and I have a partner who is very self-sufficient so I could do that. Can you do something like that too? Or let others take care of you?

Our bodies are all different so we need to do what we feel is best for us. Please do keep me posted. Prayers & positive thoughts to you.

Hi @cjp930 I decided to do the clinical trial. (Groins v iii) Neither treatment was better than the other so I went will the less invasive. I'll keep you posted on how things are going.

I start May 8. Will have chemo & radiation that day. Radiation the rest of the week. This will be schedule for 5 weeks.

@cjp930, when will you start radiation and chemotherapy? Will they be done at the same time (concurrent)?

@stolisnc30, how did your appointment with your doctor go? Did you decide to have additional surgery? Any clinical trials an option for you?

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.

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,
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!

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