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

One year ago I was diagnosed with vulvar cancer. It started with LS which I had for a very long time & didn’t know it. I went thru chemo & 32 radiation treatments. A life changer.
Had my 5 month pet mri all was good. Due for another and hoping all is good again. This is my life now. My question is will my vulvar ever be the same again? It has healed but skin is just not the same & still sensitive . It seems I may have late side effects also. Is this the new me?

Been there. All I can suggest is to get medical treatment from a cancer facility that specializes in this. I was amazed at how many "cottage" hospitals are not versed in the latest treatments, or don't know it when they see it. I hope this will be possible for you

Wishing you much luck with the Aldara. Yes please keep me posted. I’m not sure I mentioned but I thought I had LS for 10 years (and maybe it was LS) which I treated with the clob but lo and behold it became or always was EMPD. I’m thinking to go on Aldara for just one area. How are you tolerating it?

I am 7 months out from losing all external genitals to vulvar cancer; but feeling better every day after aggressive treatment. 6 all day chemotherapy sessions and 33 radiation sessions. First pet scan after treatment coming up in a few weeks. This has been the worst 7 months of my life, but, finally I am beginning to enjoy the normalcy of life. Unless you have been as far down as I have been, you don't appreciate and love normal. Life goes on. For now.

Hi @gabi7604, getting a diagnosis of vulva cancer (any cancer actually) throws you into a strange space. It's like entering a foreign world where you don't know the language and no one gave you a map or GPS.

Let me assure you that you are not alone. There are women here like @bobette1 @brandysparks @bijou68 @silverangels @scm @ladee @dignity @yolanda1954 @caddo @wilted @pam6426 @vickiehane and others who have walked this path before you and are ready to guide you, answer questions or just be that virtual hand.

Gabi, it sounds like your diagnosis also may involve some of the surrounding lymph nodes. What have you learned about your diagnosis and treatment options so far?

@nomikins - Hi! Although your Q may not have been directed to me, just thought I'd mention that I am currently taking the Imiquimod ("Aldara") for Lichen Sclerosus ("LS") in the vulva that has become precancerous ("VIN III" = Vulvar Intraepithelial Neoplasia).

I've had the condition diagnosed in January of this year, then had complete laser ablation of the vulva in Feb., then deeper excision of one area in April. Now the Imiquimod for "new" lesions in the areas addressed in the laser ablation, but that were more delicately addressed due to their location near the urethra.

Hoping the Imiquimod will eliminate these regrowths, and no further surgery is required, although the gynecologist checks will be required every 6 months for the rest of my life.

On a continuing basis, though, I have for years been prescribed Clobetasol propionate 0.05% for the ongoing management of the LS condition. In my understanding, this ointment is the current standard of care for my condition, and I have had no side effects from its use.

I do not have Pagets, though I understand some of the commenters here have raised that as a condition they are dealing with.

Best wishes. Will keep in touch.

Good morning:

My oncologist told me three years ago after my gynecologist did my first 3 or 4 biopsies that I may have had a sign warning me a year or a year and a half before the discovery. During Covid I had to use any kind of toilet paper I could find and I noticed that I had a little tear on my vulva skin. A lot was going on at the time (my brother dying of Covid) (loss of my job) and was not concerned. I thought it was due to the different types of paper. The tear never happened again. I was asked to do mirror checks often to note any changes and I do somewhat often. As a suggestion, perhaps you can suggest to your doctor that Imiquimod was used by others having Paget of the Vulva and see what she says. I think that a cream treatment might be worth trying and takes about 2 months before any surgery. Let's keep in touch.

I’m just curious whether you had symptoms with the Paget’s or not. I have virtually no symptoms which is why my medical team said I could wait on surgery or even with using Aldara. But I’m thinking proactively it makes sense to at least try the Aldara. I’d love to know, What were your symptoms before the treatment?

@bijou68 - Thank you SO MUCH for sharing your experience with Imiquimod, and, most importantly, its success for you!!

I have 4 more weeks to go til I see the Gyne Oncologist, and still no burning, but maintaining the regimen, and hope. But, like for you, it is going to be lifelong, every 6 months checking.

Yes, let's keep in touch on this through MCC here. & "Keep Up the Good Work!"

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