Vulvar Cancer: Anyone else?

Many women are exposed to HPV and have no symptoms.
Cancers can develop after many years since the time of exposure/infection. Have you asked your doctors if this is a possibility?

One more thing…I was diagnosed with “pre-cancerous lesions in the vulvar area and inside where my uterus was. (Had a hysterectomy)
They were removed surgically, and I was told to be examined every 3 years in case other lesions developed. I was diagnosed with HPV in the 1990’s and the pre-cancerous lesions were found more than 20 years later.
Hope this was helpful to you or any others with this issue.

Hi,

I did not have cancer, it was just a large lesion from Lichen sclerosus. The incision is almost healed now, it has been a tough month. Now that I have thought about it, the area started a number of years ago as a redish and tender area but my physician never indicated that it could be attributed to Lichen sclerosus. I guess the vulva is like your back or the back of your head, out of sight out of mind. I never look at that area because it takes an effort to check these areas out. I know now to check the vulva regularly to try and head anything off before it gets out of hand. I was diagnosed with Lichen sclerosus in January 2021 but had hip surgery in the summer of 2022 and quit applying the steroid ointment which keeps the Lichen s. at bay.

I had a modified radical vulvectomy on October 25 for squamous cell cancer and will have radiation 5 days a week for 6 weeks. The margins were clear but too narrow and one lymph node was positive and had metastasized so it is Stage 3 so I will have radiation on the abdominal area also. Hopefully others whose cancer is similar will share their radiation experience as I feel that will be helpful to me..

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

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.

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

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?

@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?

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