VIN 3 dysplasia recurrence

zbethz
zbethz Member Posts: 1 Member
edited December 2022 in Gynecological Cancers (other than ovarian and uterine) #1

I had the ultrasound ablation surgery last July to remove some VIN 3 lesions. I healed up nicely, but felt itching in January. A follow up showed I have VIN 1 now, and they say no treatment needed. It has gotten worse in the past 2 months and I had to argue to be seen again before my July follow up. In 2 months, I have noticed two new lesions where old ones were removed. I can't believe how quickly the lesions came back and how dismissive my oncologist has been in regards to seeing me sooner. I will be seen on May 10th. The waiting is killing me. I assume I'll have to have the same procedure again, and possibly they will have to cut into my left inner labia. Can anyone who has been through this let me know how close this is to escalating to vulvar cancer, and what their journey has been? Can things jump from VIN 1 to VIN 3 and then cancer, seemingly overnight? Would really appreciate some advice and support. Thank you so much.

Comments

  • lauriegb
    lauriegb Member Posts: 12 Member
    #2

    Hi zbethz, I just read your post and wanted to reach out. I am 1 month post op for VIN 1,2 and 3. I have occasionally felt some itching since surgery but i may just be paranoid. My oncologist said it’s probably healing. I will definitely pay attention. Next follow up isn’t until October.

    How are you? How did things ever turn out? I know “our board” isn’t as active as others. Im sorry if your questions were unanswered.

    I hope you are good!

    laurie

  • SkyHigh
    SkyHigh Member Posts: 1 *
    #3

    I waited 17 years before seeking treatment for a spot that I turned White immediately upon applying salicylic acid. Which I had applied in an attempt to remove it. Yes I’m that type of person. Biopsy result was VIN III. Upon consultation with two oncologists at two cancer centers I refused surgery. There is a 25%-80% recurrence rate of VIN. I decided to live my life wholly intact as long as I can and then accept my fate. I chose Aldera cream. It purposefully induced an inflammatory response that allows your immune system to eradicate the lesion. Some people’s systems don’t react to it. Mine did. I applied it more often than prescribed which my oncologist was fully aware of. Most people can’t handle it. So they give up. It can become erosive. I bled. It was painful. She asked “Doesn’t it hurt when you apply it to open spots?” YES! It can become systemic and cause you to feel like you have the flu. I’ll take that over awakening from anesthesia only to discover the extent of maiming had been done to me at the hands of a surgeon and “their team”. I have to be in control of myself. It’s just who I am and what I’m comfortable with. Two years down the road I forced another biopsy and will use the cream again. I am still wholly intact. No cancer. Aldara cream is only for the few who will truly be dedicated to the application of its use, be prepared for pain to the point of prescription lidocaine that burns like fire upon initial application, and the inability to sit for long periods of time, or grin and bear it. I studied research papers, studies and forums from the U.K., Turkey and Australia before I made my decision.

  • sandym2554
    sandym2554 Member Posts: 2 Member
    #4

    Hi SkyHigh

    I am so glad I read your post. I am going through a battle with a surgeon right now about having that hideous surgery. I also chose the Aldera cream and wondered if that was the right move. Now that I heard your story I have hope again. Last check up showed the cream was shrinking the lesion on one side but still wants to do a partial. I am not going for it. I will face the music later. I never was offered or told about the cream, I did my own research and asked for it. I was never offered an alternative. How are you doing now? I admire your determination. Take care

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