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

Hi Brandy: I had my visual by my gynecologist and she said that this time around I did not have a manifestation of Paget of the Vulva like I had a year ago and two years before that. I have to go back every six months for the rest of my life. So, I appreciate a break this time. She seemed to think that I was responding well to Imiquimod. I did recall reading your text that the second time, last year, that I did not have the burning and the itching was not bad and I remember that I also thought maybe the cream was not working well. But it did, so maybe that will help you. So, I am taking it one day at the time. I think more and more we will see new cases of this disease and maybe that will excite researchers into researching new medications or procedures... Let's hope.. Let's keep in touch

@bijou68 - Hi! Clobetasol is to manage the Lichen Sclerosus that can (& has, in my several cases) lead to Vulvar Intraepithelial Neoplasia (VIN), which is a precancerous condition that can lead to the Squamous Cell Vulvar Cancer.

I am still applying the Imiquimod cream 3x/wk, and the Clobetasol on the other days to hopefully manage/abate any further VIN developments. Though the way it has gone this year, "out of the blue" after 40+ years of watching my skin condition, I am told it will need to be checked every 6 months for the rest of my life. That is fine, if that is what it takes.

I still have no burning from the Imiquimod, and my oncologist says that is OK - with all the caution I'd received about it burning, it worries me that it is really being effective. But I will find out when I return for the 2-month check w/the oncologist in early Sept.

I am not suggesting this, but having had the direction from the oncologist to have the laser ablation (that was the 1st surgical procedure I've had for this, it was in Feb. this year), I wonder if that is an option in your circumstance, rather than the excision being the only option for each spot?

Again, not suggesting it, but maybe worth inquiring about? And can you get to a gynecological oncologist for further insight if you haven't yet?

Best wishes, and let me know.

So glad you had a pet scan BEFORE surgery! I had squamous cell cancer removed and multiple tumors removed. One tumor came back as cancerous and now we are trying to figure out what to do next. 1. Remove all lympnodes in groin area because the tumor was exactly in the middle, followed by 2 rounds of radiation. Risk factor here Lymphedema, which is painful and debilitating. 2. 2 rounds of radiation in the pelvic area and 1 round of radiation targeting the spot where the tumor was. 3. Do nothing now with a yearly follow up.
Sounds to me like you are on the right path and everything is being accessed before surgery! Good Luck!

Hi Brandy: First: ask questions until you are satisfied. It is your right as a patient, and it is your body and you have medical assurance. Is the Dr. you are talking about an oncologist?
I think the Imiquimod will kick in. You only had a few doses so far and i think the effects are cumulative. I think 3 times a week is a good regimen for 2 months. It is what i did at the last manifestation a year ago. The first manifestations 3 years ago was really challenging because i was stold to take it every day and i was a mess with itching endlessly and burning endlessly which made my oncologist changed the protocol to 3 times a week but longer. Last year she gave me a medication to lessen the effects of Imiquimod. I can look at the name of it on my kaiser site. I don't know anything about Clobetasol. What is it for? I have a visual appointment with my gynecologist august 1. Of course, I am not looking forward to it. All i know is that my oncologist 3 years ago proposed an excision of my clitoris but found out Imiquimod was another option. After that with so far a total of 10 different spots in all areas of the vulva, she said that it would be too many spots to excise. So honestly i try to forget i have this strange condition but keep on top of the treatments, the check up appointments etc... If on August the gynecologist who caught all 10 spots, spots again some more manifestation then i will be at a loss. I am keeping you in my prayers and please stay in touch. Brigitte

@vickiehane, I hope @ljchicago will see your question about whether or not she had lymph nodes removed as well.

Vickie, have you decided which course of treatment to get?

So glad you had a pet scan BEFORE surgery! I had squamous cell cancer removed and multiple tumors removed. One tumor came back as cancerous and now we are trying to figure out what to do next. 1. Remove all lympnodes in groin area because the tumor was exactly in the middle, followed by 2 rounds of radiation. Risk factor here Lymphedema, which is painful and debilitating. 2. 2 rounds of radiation in the pelvic area and 1 round of radiation targeting the spot where the tumor was. 3. Do nothing now with a yearly follow up.
Sounds to me like you are on the right path and everything is being accessed before surgery! Good Luck!

I have had twice in 14 months. 2 vulvectomies...first "simple" is ironically more involved a painful and that was my first one. I was so scared to have a 2nd one year later, but the area was caught sooner and was much smaller. I was back to teaching AND bartending in a week. This is easier to fix than some squamous diagnoses. I was so scared. I previously dealt with endometriosis and then cervical then most recently the vulva. Today, they decided a few bleeding episodes 1+ post an early menopause was cause to do biopsy on uterus/endometrium. I feel for you. I wish it was an area like my finger or knee that everyone would love to hear about. It's such a private area and hard to speak with anyone other than my doctor and apparently complete strangers right now. If you'd like to reach out, feel free to let me know and I can contact you somehow without posting here?? Not sure how. But I could use a support group and have yet to find one in my area that deals with this. Anyway, thanks for "listening" 🙂 Trying to keep the smile and the faith - Army Brat/KC

Thank you @ljchicago for sharing your experiences with @bobette1 I agree that some cancers seem to get more "press". Since @bobette1 started this discussion I have been reading about vulvar cancer and learned that while it isn't as frequent as breast cancer or uterine cancer it's not extremely rare either. I had a gynecological exam with a nurse practitioner earlier this year who asked if I wanted to see what she saw. This was the external part of the exam. When I said "yes" she handed me a mirror and educated me on what she was looking at and what I should look for. I wish that this type of education would happen for all of us women when we get these exams.