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

Welcome @bobette1, This is all so new for you. I'm sure you have loads of questions. @wheaton and @boxermomma have experience with vulvar cancer and hopefully will have some tips and thoughts to share with you.

Bobette, have you already discussed a treatment plan with your oncologist? What's the next step for you?

I am meeting my oncologist tomorrow

I have had twice in 14 months. 2 vulvectomies...first "simple" is ironically more involved a painful and that was my first one. I was so scared to have a 2nd one year later, but the area was caught sooner and was much smaller. I was back to teaching AND bartending in a week. This is easier to fix than some squamous diagnoses. I was so scared. I previously dealt with endometriosis and then cervical then most recently the vulva. Today, they decided a few bleeding episodes 1+ post an early menopause was cause to do biopsy on uterus/endometrium. I feel for you. I wish it was an area like my finger or knee that everyone would love to hear about. It's such a private area and hard to speak with anyone other than my doctor and apparently complete strangers right now. If you'd like to reach out, feel free to let me know and I can contact you somehow without posting here?? Not sure how. But I could use a support group and have yet to find one in my area that deals with this. Anyway, thanks for "listening" 🙂 Trying to keep the smile and the faith - Army Brat/KC

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.

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?

@bobette1 I can imagine how frightening this is for you. While I wasn't diagnosed with the same cancer as you I do remember feeling very shocked and practically "out of my body" when the gynecologist called me to tell me my biopsy was endometrial cancer.

You mentioned in an earlier post that you had an appointment scheduled with your oncologist. Have you met with them yet? Do you have a plan of how the cancer will be treated? Personally, for me, once there was a plan in place I began to feel better because I "knew" I didn't have to worry alone anymore and the cancer team would take care of me.

Oncologist appt went as expected. PET scan is Tuesday and if all goes well surgery will be scheduled.thank you for asking.

Thank you so much for reaching out. I. Saw my oncologist and went as expected I have the pet scan this Tuesday and if all goes well surgery will be scheduled after that. It's so frightening not knowing anybody else that has had this particular cancer being that it's on the outside of my body is even worse because it's so sensitive I can't sit comfortably I can only lay down and I'm trying to work up until I have the surgery and I have a sit-down desk job. Good news though he thinks he can get it all with surgery and I won't need chemo or radiation which is a blessing

@bobette1 Thank you for letting me know how your appointment went with your oncologist.

It's great that you will have the PET scan very soon and surgery can be scheduled quickly if all goes well with the PET scan. It is good news that your oncologist believes all you will need is surgery which is reassuring. You will know very soon the direction your treatment will go.

Oh, it sounds so uncomfortable for you. I didn't know what I'd feel like doing after my surgery so I spent some days before then cooking and storing away meals . That felt good to me. What are you doing to take care of yourself that feels good to you?

Thank you @ljchicago for sharing your experiences with @bobette1 I agree that some cancers seem to get more "press". Since @bobette1 started this discussion I have been reading about vulvar cancer and learned that while it isn't as frequent as breast cancer or uterine cancer it's not extremely rare either. I had a gynecological exam with a nurse practitioner earlier this year who asked if I wanted to see what she saw. This was the external part of the exam. When I said "yes" she handed me a mirror and educated me on what she was looking at and what I should look for. I wish that this type of education would happen for all of us women when we get these exams.