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

I started radiation treatment this week. So far so good, but I’m curious if anyone has any suggestions for how to deal with the side effects.

Thanks. I will need all the support I can get. I go Monday to the gynecologist oncologist to start the tests.

You are so fortunate that the biopsy showed this cancer right off. Mine was negative, first surgery started with the diagnosis of VINIII (i.e. even the surgeon didn't recognize it when he saw it) and it was not until the post surgery pathology that they made the diagnosis of Stage 1B vulvar cancer.l
This required a second surgery...more extensive and included bilateral lymph node dissection. My second pathology was totally negative (including the surgical site and all lymph nodes removed)
Your path will be more direct. Seeing a gyn oncologist right off the bat would be the way to go. This is a special cancer, so seeing someone who has had a lot of experience with this would be best (especially if a cancer center is nearby -- worth the trip). It will save time. The goal is to have as much information about your situation as possible going into surgery. The proper, experienced gyn oncology team will order all the screenings you will need to accomplish a good result! Feel free to reach out at any time. This is a great, supportive group, by the way. They gave me all sorts of support! (I didn't tell anyone either - lol!) When I had breast cancer I told everybody! That became my label (and still is). You can get all the support you need from your team and this group, especially at the beginning here.

Thank you! I’m heading in for my first appointment. Guess we will develop a treatment plan from here. God Bless you All!

I had surgery for squamous cell vovular cancer last November and then went through 6 weeks of chemo and radiation. My tumor was the size of a grapefruit and I'm thankful it was able to be removed but it's been quite an experience for sure. The worst part is make sure that you don't rip your stitches which is really hard to do as far as I'm concerned cuz I ended up with more scar tissue that expected which affects everything else down there. It has been 5 months since my treatment ended and it still bothers me day today as it probably will for you too because every time you sit or get up you feel it. But it is great to know my cancer is gone. So I wish you the best of luck and keep asking questions because it's not a popular cancer so a lot of people don't know about it

I had surgery for squamous cell vovular cancer last November and then went through 6 weeks of chemo and radiation. My tumor was the size of a grapefruit and I'm thankful it was able to be removed but it's been quite an experience for sure. The worst part is make sure that you don't rip your stitches which is really hard to do as far as I'm concerned cuz I ended up with more scar tissue that expected which affects everything else down there. It has been 5 months since my treatment ended and it still bothers me day today as it probably will for you too because every time you sit or get up you feel it. But it is great to know my cancer is gone. So I wish you the best of luck and keep asking questions because it's not a popular cancer so a lot of people don't know about it

Hi there!
I think that the gyne is the right direction. It is likely that the colorectal surgeon would send you to one anyways.

I'm going to be brutally honest here, this is what happened to me. You might be lucky and just get surgery. But if you don't, this is what happened to me.

I can tell you that the initial set up of everything is the scariest part. Once you start treatments (whether it's surgery, or chemo and radiation) it will become a routine, which oddly adds some comfort. At least, it did for me.

I couldn't have my tumor removed, since it was so close to my urethra and anal verge that if they had operated, I would have lost the ability to go to the bathroom completely. So I had 30 rounds of radiation, and 6 rounds of booster chemo, which made the radiation stronger. It didn't make me sick, (there are meds you take beforehand to help that) and my hair didn't fall out. It did take 4 hours to be run through though.

The radiation was the hard part, cause with that many rounds, it gave me "burns" on the backs of my thighs and buttocks, which had to be treated by a wound specialist. Creams, soaks, medicine, etc. As it heals, it's not as bad, but at the beginning it really hurts.

And the radiation hurts. It takes less than 5 minutes (again, for me it did) but after a while, the whole area just hurts all the time. Make sure that you stay on top of your pain medicine. I couldn't take advil (allergic) so I don't know if that would help with the pain. Sitting hurt so much. I found that sleeping reclined on the couch was the most comfy for me.

Any other questions, please feel free to ask me, I can try my best to help.

Hi there. I just received biopsy results today that I have squamous cell cancer on the vulva (episiotomy scar). I am no strange to skin cancers but this is new and I’m scared. I have an appointment with my gynecologist Thursday. I have no idea what to expect. I had my dermatologist do the biopsy but he recommended I go to a colorectal surgeon. The PA said since she knew where the biopsy was located to go to a gynecologist. Am I headed in the right direction? My husband is the only person I am confiding in. Any advice is welcome.