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

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@ljchicago

They are free to reach out to me. Sadly, not new to it, but the first one was literally "scarring" both physically and mentally, and as problems persist, it would be nice to "speak" to people. I can't find a local "in person" group. Even mastectomies have become openly spoken about, but I feel like women's genital areas are off-limits for any kind of talk. We even talked testicular cancer when it was Lance Armstrong! Why did I not even know I HAD a vulva, considering I had dealt with endometriosis, nerve pain in utero, 2 vulvectomies, 3 laps for cervix, partial ovarian removal, etc.??? You'd think I'd be an expert. I had to read up on the topic! But nothing prepared me for being told it was no big deal, when they can only see the surface. They basically fully diagnose/remove any cancer at the moment of surgery, so they can only guess how "bad" until they actually get you under...then you have no say. I felt mutilated after my first. They said it was necessary. The second was much less traumatic and hopeful for me in the future. I was already told at my follow up today that there is new growth, but mild, so it's already coming back! But they don't touch at VIN 1, so Im basically waiting for it to grow until they have to remove again. At my rate, probably early 2023. On top of that, I hit menopause pre-50 and have some spotted bleeding 1+ after, so multiple biopsies on the uterus today. One week to worry about that one. Prayers it's no big deal. Bobette, boxermomma and wheaton, reach out if you want. - Undesirable nearly 50 singleton mom of 3 female teens here in flyover country feeling all alone in this. Seriously could use some sisterhood here.

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Replies to "They are free to reach out to me. Sadly, not new to it, but the first..."

Thank you, @ljchicago. I'm confident that @bobette1 would appreciate connecting with you here in this discussion forum. While I'm sad that you are familiar with vulva cancer and other gynecological conditions and cancer, it is good to know that you are here to support others. And in doing so, will hopefully also feel the support of sisterhood. Thanks for raising your hand.

@bobette1, how are you doing? How did the appointment go with the oncologist?

Hey, thank you so much for your post. I can't tell you how much it means to me. It IS so hard, and embarrassing, to have this kind of diagnosis! Like, WHO wants to talk about this? I was given the results of my biopsy yesterday and it was already VIN II. Already have an appointment with a gyn oncologist for surgery. My cancerous area is around my vaginal opening and I'm terrified for the surgery. Will I be completely disfigured?? Sorry to ask but.... I'm scared!!

I'm curious when u say vulvectomies, what did they remove? I had a vulectomy and they removed my left labia, why ? I'll never know.

Hello. New to this group but grateful to find it.
I’ve had three biopsies, and one laser ablation. All of the biopsies have come back VIN1.
My gynecological oncologist is very proactive with any change in skin.
I’m 72, and had stage 1 ovarian cancer 15 years ago, so they were hesitant for me to use any estrogen.
I also have Vaginal Atrophy,so I’m really wanting and waiting to receive some very mild estrogen cream?
Sometimes it’s all overwhelming.
The VA is really very uncomfortable.
I’m in Northern Indiana.
I’m glad to find this forum.