Vulvar Cancer: Anyone else?

Hello, ladies. I am also in your boat—had a partial vulvectomy 2 1/2 years ago, which did not achieve clear margins. Since then, I have been through two rounds of treatment with imiquimod, which is very irritating. So I, too, wear longer skirts or harem pants (available through Amazon) without underpants. I have found that I can wear leggings in a size or two larger, so the crotch doesn’t touch my vulva. Feels funny, but works! I strongly second the advice to get biopsies whenever recurrence is suspected. I also rely on Aquaphor to soothe my skin.

Just curious as to what it feels like when things touch against your vulva?
For me it’s a feeling of soreness and tenderness.
I need to be careful when getting in & out of my car & when sitting.
Just doesn’t feel the same.
Is this the new normal?

I would describe the feeling the same way—tender and sometimes sore. Stretching to get in and out of the car or doing exercises doesn’t bother me anymore, but I do have to occasionally adjust how I sit. Yes, I am guessing this is the new normal.

So my PetScan and pelvic MRI were for the most part positive. I am having partial vulvectomy surgery on March 10. During my office exam, the mole that other doctors said was just a mole didn't look right to my Mayo doctor, so he biopsied and it has been confirmed as malignant, so will be having that removed as well. I am not sure what will happen going forward other than repeat exams and scans, but I feel fortuate that things will not be as horrific as I was first told. I am anxious about missing something going forward. The first "lesion" was so tiny and the second a small mole. I need education on what I need to look for! Thank you all for your kind words and prayers, I feel blessed to have you all as a sounding board.

@komiskey10 This all is good news. I’m curious, though. When you noted that the pelvic MRI and PET were “positive” did you mean No Evidence of Disease? In that case, the scans would be negative for disease. Did the scans shows anything?

Sorry for the confusion. I meant scans were positive for me. They were negative for disease in lymph nodes or other areas. The scans showed activity in my thyroid. I have cysts and nodules, but have been battling that issue for 10 plus years.... He had me send it to my endocrinologist. Pelvic MRI showed cysts on my ovaries and in my uterus. Thanks for asking.

@komiskey10 So all good news for you. Congratulations that nothing new showed up in the scans.

I have a paget's disease of the vulva and had to have surgery
No diapers involved. I don't know what that could be. And no this is not our fault. I am now using Imiquimod and feeling tired but hopeful to not have to have surgery again right now. And, every day is a new normal

I was diagnosed with vulvar cancer stage 1b in may 2023.
I’ve been cancer free since but have suffered with a lot of soreness, tendeness. I now have a lot of itchiness & Inflammation. I saw my oncologist 2 weeks ago. She suggested vulvar cream but that is not helping. What is going on! Is this just another Side effect? Maybe pagers???

I suffer the same. I am 2 years out from surgery/chemo/radiation for stage 3 vulvar cancer. I did have some lymph nodes removed too. Unfortunately my Dr said it is my new "normal". The cream does help some in the moment. Vulvar cancer is a form of skin cancer so I am glad they finally took a look at your mole. I pray for a successful surgery for you.