Vulvar Cancer: Anyone else?

I, too, had squamous cell of the vulva with surgeries spanning 10 years..last one being 25 years ago. Please look for my suggestions in Paget’s disease forum? I have no idea how to transfer all of that info to this group, but the recovery is so similar. I was hoping administrator could copy info to this page. I never had radiation or chemo, but there were less than 3 patients in the US, and my prognosis was not good back then.

No. Only radiation.

@scm I know that you will be in the care of a caring, compassionate, and collaborative medical team. They will answer all your questions including the fears you have about the chances of a recurrence. They will explain the lymph nodes to you. Yes, you are terrified. I was too but I also had a certain peace that came with knowing that I was surrounded by a team of people who cared for me as a whole person. I’m grateful that you are going to Mayo.

May the peace and light of the holidays surround you. Winter Solstice was just a few days ago and we are entering into brighter days.

Are you having immunotherapy?

Honestly, I am terrified! Praying that lymph nodes are clear as that gives me a chance of recovery. I just keep reading that it comes back even after a radical vulvectomy and that there seems to be problems after a vulvectomy with infection and healing but feel that Mayo is my best chance

@scm It’s good to see that you went to Mayo Clinic as planned and that you had a thorough visit. That was my experience when I was diagnosed with endometrial cancer in 2019 and then a recurrence in 2021. In fact, I will be at Mayo Clinic for my cancer surveillance appointments on January 9, just a week after you. I go to every one of these appointments with some anxiety and dread that has become a little better in the past two years. I understand the anxiety I experience is normal.

How are you feeling now that you have this plan in place and know that you’ll be having surgery on January 2?

I went to Mayo on Dec. 6th as planned. Saw several surgeons on my team and had a pet scan. The second surgeon removed the tumor and some margins. Pet scan showed clear lymph nodes but biopsy showed invasive melanoma more than .5 mm in depth. I am having a wide radical valvectomy on Jan. 2nd and they are going to take sentinel node biopsy. My surgeon said that the pet scan is very good at detecting major melanoma in organs and lymph nodes but has difficulty catching microscopic melanoma in the lymph nodes and she wants to be sure. Immunotherapy will follow. If it is found in the lymph system, then radiation, chemo and immunotherapy. I will be at Mayo in Rochester.
Where are you being treated?

Hello like you had no clue about vulvar cancer
But for year I'd get a patch that would itch dr always said just yeast infection so I treated it and put Tea tree oil on it it go away for a while then come back this been going on for year the do my pap normal but I do have history of cervical cancer for mid 90 it's been 27 years I just word as there was to lesson and he only biopsy 1 of them I've seen a lot of post women not.sure where come from just head's up you can be born with a certain gene smoking sex have a sore that you may of itched to much
3 years ago mine wasn't there I had angio on heart that same night went to er I thought had a uti same symptoms even was sent to urologist kept showing sign of uti but no bacteria so please if anyone has this happen get to gyno I don't know what's a head for me but thankfully I only have few days to find out oh think that mine may be coming from thyroid goiter but will see
Prayers to all

The diagnosis of hpv can be made ahead of time. I was told at DF that hpv related vulvar cancers are generally slower growing than most. For that reason, I decided to "go big or go home" Two surgeries and complete lymph node (16 total) excision both sides (all negative nodes on pathology). That lymph node stuff was tough to get over, but now I am looking at 2 years worth of 3 mo. surveillance visits and that's about it, and 3 more years every 6 months. Completely healed inside and out. It's out of my mind. The type of pre-cancerous skin condition was misdiagnosed initially, and the type of pre-cancer skin condition I do have is less threatening as well.

Hi Alice, I was diagnosed with stage 3 Vulvar cancer a little over a year ago. I had surgery and then once healed from that, I had 6 weeks of chemo and radiation. I took had never heard of vulvar cancer. I think I got mine from a mis diagnosed HPV infection. Anyway, not very common. Please keep in touch when u get your results. I will be praying for you.
Bobbi