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

Hi, my name is Liz, and I'm from Canada. Here's my story.

I was diagnosed with this cancer in March 2022. It was a massive outer tumor. It started at the back of the vulva, and went right back to the anal sphincter. It was a very quick growing tumor, and incredibly painful. I went to Juravinski Hospital for my treatment, which began with Lymph node removal (half of them in the groin only. It had begun to spread there), and then 30 rounds of radiation, and 6 rounds of Chemo. Also wound therapy, since the back of my thighs and buttocks were badly burnt from the radiation.

I found out in December of 2022 that I was tumor free. I was told that the aggressive tumors usually respond well to aggressive treatment, so I guess I am a lucky S.O.B. My treatments ended in September of 2022. So it's been 10 months since they ended. I've found that I'm still incredibly tired, and nauseous, and was wondering if that was the same for anyone else? I returned to work (retail) in April 2023, and can still only manage 2 4 hour shifts before I'm completely wiped out.

I do have some issues I was wondering of anyone else is having. I find that my skin down there is incredibly delicate now, and even wiping with a bit too much pressure will make the skin bleed. Is this normal for anyone else?

Any thoughts or responses are appreciated. I'm doing as well as can be expected emotionally (still angry, anxious, and frustrated) but the physical symptoms are whats bothering me right now.

Hi Liz. I’m still very early in the process so I can’t really comment on long term side effects. Did you talk to your doctor about the bleeding? I was having an issue with some residual bleeding and they recommended that I start using the silvadene cream that they gave me post op. It seems to have done the trick.

Good luck with your recovery.

Hi there! Thanks for responding!

This is a new thing thats happened, and I'm going to see my doc in a few days, so I'll be asking them then.
I'm assuming it's because the skin is still so new that it just breaks down far easier than normal. But It's still frightening. I was just wondering if it had happened to anyone else? The whole area is almost alien to me now, it's numb, the skin is weird feeling, and let's just say it s like I haven't hit puberty yet.

Thanks everyone for being there for us all, it's such a specific cancer, and it's nice to have others to talk to that have been through the same kind of thing.

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.

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!
this is just my story, so please take it all with a grain of salt

I had 30 rounds of Radiation, and it was targeted at the tumor (Obvs!) they may make a plastic shell to help centralize the radiation. They may give you tiny tattoos to help keep the plastic frame in position each time. the machine spins around you twice, and then you get down off the table. I also got 10 additional rounds of targeted radiation, with a new smaller shell specific to the tumor itself. It's the aftereffects that are hard to deal with.

The more radiation you have, the worse the burns get. Mine were half way down my thighs, and in and around my buttocks, especially in the folds of the buttocks into the top of the thighs. the skin sloughs off, and when it heals, it's hard and scaly. That's when you need the medicated moisturizing cream. I didn't really have much pain from the burns in the vulva area itself, but I also was partially numb there from having my lymph nodes removed. The feeling is coming back, but it will take a while.

I found that where my burns and tumor was, it was most comfortable to sleep sitting up on a couch, at a slight angle. the cushiness of the couch helped with the pain. But you may find sleeping on your side better.

stay on top of your pain meds, and make sure that they use a numbing gel on you before they start treating the radiation burns. I had lidocane.

please feel free to ask me anything, I want to help people however I can.

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.

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

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

@bobette1 It's good to hear from you and to know that the cancer is gone. It's sad to me that you continue to have pain and discomfort from the surgery, chemotherapy and radiation therapy. I'm hoping over time that the discomfort you are experiencing will lessen.

This Discussion that you started has been very active. Squamous cell vulvar isn't widely known and so it's good that women who have this diagnosis have found Mayo Clinic Connect and this Support Group. You started an excellent and helpful Discussion for the women here.

Do you have any other tidbits or advice for the women who are posting here and scheduled for surgery?