Vulvar Cancer Support Group

I had VIN III 14 years ago which was very extensive due original misdiagnosis. Treatment at that time was a skinning vulvectomy. It is still the recommended treatment for VIN III or squamous cell carcinoma in situ.
9 years later I had surgical excision of a small reocurrence.
I most recently had extensive laser surgery for VIN I.
I am considered to be "high risk" due to my reoccurences.
Best news it that your Doctor did diagnose your VINIII. 90% of vulvar cancers are originally misdiagnosed. The worse it gets, the more extensive surgery will be.
I will be happy to answer any questions you have.

I had laser in September on the labia minor for VIN 111. It was not as bad as I thought. I am now having a burning sensation on the other side, but no ulcer as before.

thanks for your replies. it is helpful to talk to someone who has been through this. i met with the oncologist. he said he is going to do laser since it is so widespread but that from what he could see it didn't look cancerous. my husband would feel better if the dr. wasn't just making that judgement with his naked eye, but it helped me relax. the dr. said it would be very uncomfortable and to expect 3 weeks out of work and a high rate of reoccurence. not looking forward to laser, but will be glad to have something done.

Hi OMG123,
The Doctor should do biopsies during surgery to get an ideal of the "margins" or the area of spread.
The main item that you will need after surgery is the longer maxi pads. A good supply for three weeks. A couple of bags of large cotton balls (instead of toilet paper) and a squirt bottle to rinse with warm water. A shower massage (with water pressure as low as you can set it) is helpful for showering after urination. Ice packs help reduce pain. Do not let ice pack touch the skin and do not keep it on for more than 20 minutes at a time. The 7th through the 9th day was the most painful for me and it was not "extreme" as I've read online. Just rest and let as much oxygen get to the site as possible. You will be fine!
17 days after surgery...I could sit on a soft surface for several hours at a time. 1 month after surgery I was healed. Good luck and know I'm here for support!

I guess it's different for all of us, the laser. The baths with epson salt three times a day, loose clothing or shirts and no panties worked the best for me. I felt like I could work after about 10 days.

Hi Tina,
Yes, recovery time depends on the person and the area involved.
My lasered area was very extensive. From my clitoris, beyond my anus and out to the hairline on each side.
Laser was much quicker recovery than my earlier vulvectomy.
The type of surgery required depends on what stage of VIN or what stage and type of cancer.

the laser surgery ended up being pretty extensive. the first two days were not as bad as i thought. the worst was waking up from the anesthesia.... it seems to be getting more sore with each passing day, but with the ice and baths make more discomfort than actual pain. i am only taking one pain med -at night - since they totally knock me out for 10 hours.....

Hi OMG123
You might want to try breaking your pain pills in half. Taking one in morning and one at night. This way it keeps the level of medication more consistant.

I understand wanting to reach out to get additional information. I am having a surgical excision with laser done on Friday, March 20th, 2009. I am starting to get a little nervous with havin both done at the same time. I want to thank you all for your continued support and encourgement.

Here is a site from the American Cancer Society that has some very useful information.

Vulvar Cancer: http://documents.cancer.org/161.00...

It goes through the different stages and the different treatments. Rather lenghty to print off but is helpful.