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

My vulvar cancer was stage 1B. No surgery due to the size of the lesion (too big & I am very tiny down there).
I am reminded every day & worry if it will return! I have both lidocaine & silvadeen but don’t use very often. I was using a dilator which helped but not all the time .
I understand There are many late side effects so every time I feel something strange I wonder if it’s a side effect. I’ve developed hemorrhoids which I never had before! Could this be a late side effect ? I remember getting radiation they were careful about getting close to the bowels! Anyway it’s comforting to share our stories! Any advise?

@andwho I was not diagnosed with vulvar cancer however you will see within this Discussion that many of your questions will be answered. @bobette1 responded to your question about how she feels almost two years post surgery and how she manages the discomfort.

I will share the following about myself. I was diagnosed with endometrial cancer in 2019 and then a recurrence in late 2021. At the initial diagnosis the cancer was stage 1a which meant the radical hysterectomy with fallopian tubes, ovaries, and cervix all removed was considered by my surgeon (and pathology reports) to have removed all the cancer. No other treatment recommended in 2019. At the recurrence (granular tissue located on the vaginal cuff that tested positive for endometroid adenocarcinoma, the same cancer diagnosed in 2019) radiation therapy was advised. I had 25 sessions of external pelvic radiation and 2 sessions of internal (brachytherapy). As result of the radiation I need to use a dilator likely for the rest of my life to keep the vagina in good health. Whenever I use the dilator and a vaginal moisturizer (also needed) I am reminded of the cancer and the surgery. While this is not as uncomfortable and painful on a daily basis as @bobette1 describes my pelvic floor was rearranged by the hysterectomy as were my intestines and so I do have discomfort with some movements.

Working with a pelvic floor physical therapist has helped a lot with all of this. I also worked with a trainer at my gym who helps me keep in good shape.

I write all of this to encourage you that it could be that your vulva may change and it will likely be an adjustment for you. I don't like the changes but I am learning to live with them. You also don't have to like your changes either but I can assure you that with Mayo Clinic Connect you will get lots of compassion and support that will help.

I had a vulvar cancer and had surgery on late2022 and started 2023 with chemo and radiation. I can tell u that my skin is still very sensitive. Did u get some cream from your oncologist? Mine is a combination of Lidocaine & Silvadene cream. I don't use it all the time but it does help. Especially at my incision site. The toughest part for me is when I walk or sit, I feel it. Hard to forget you have\had cancer when you are reminded everytime you move. What stage was your cancer? I also had several lymph nodes removed. ♥️ Bobbi

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.