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

To you All! You are all courageous! We are all in it together and it is a heartwarming feeling. My oncologist who proposed Imiquimod (Aldara apprently) was an alternative to have surgery as i had too many spots. The side effects you can work with. I will be glad to fill you in what i did to alleviate the effects. So far both my oncologist and my gynecologist say that Imiquimod is working well for me the two times over 3 years i have had to use it. So far! Let's be honest! Who knows what is in store for me. Give it a try before doing more drastic treatments. Unfortunately we are more like in the trials and errors for all of us! Prayers and healing thoughts to you All!

@andwho - Oh my! Best wishes this week.

Thinking of you, and do check back so we can keep the good thoughts coming!

In terms of the dx of EMPD, yes it was by punch biopsy. And then many more mapping biopsies all around the vulva to find how widespread. The biggest concern is that Pagets can go from non invasive to invasive. But they say it’s very slow moving. Even so, we really don’t know how long I’ve had it because I was being treated for LS all this time, which was never confirmed by biopsy. Ugh. Wish I had had it biopsied from the get go.

Glad to hear you are in remission. I’m afraid for myself that the fear will always be there.
Have you experienced any late side effects? I seem to develop issues I’ve never had prior to radiation.

Mine was stage 3 and the tumor\mass was bigger than they thought ...it was the size of a grapefruit. The best advice I have is it takes time to heal long after treatment ends. Your skin where u received radiation may never be the same again. It is great that u didn't have to do surgery. I feel like I will never have a sexual relationship again. I had pelvic PT which helped a lot . But I am very thankful to be in remission now.

Welcome. This the first step to recovery. Support.
I was diagnosed with stage 1B vulvar cancer. No lymph nodes were involved thank god. No surgery lesion was too big. Went thru 3 rounds of chemo 32 radiation treatments. Have had 1 follow up pet mri all was good, going for the 2nd pet mri this week and hoping all is good! Having had cancer is a life changer you never forget. My vulvar is not quite the same & skin still sensitive when sitting & driving. but this is the new me!
I am happy to answer any questions.🙏

@nomikins - Hi! The Imiquimod (Aldara) has had no burning impact for me, which is surprising but I guess not unique. It did make me wonder if it is/was working. I will try to see what I can see on visual inspection (it is difficult to do this, in my experience), but I sure hope it is working! I have the follow-up appt w/m oncologist in early Sept, at which point that'll be 2 months of Imiquimod application.

Also, appreciate your mentioning your experience with EMPD. I think I will mention this to my gyne-oncologist. May I ask how it was diagnosed? I'm guessing it was a biopsy with the lab assessing the cellular structure and type/s.

Geez! As far as the Aldara then, if your gyne-oncol recommends it, absolutely go for it, and I hope it will be effective for you. Is there anything else you have to be concerned with when being diagnosed w/EMPD?

Best to you, and keep posting, as you can.

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