Vulvar Cancer Support Group

Hi Lisa -

I too have been diagnosed with VIN II/III etc...I have had numerous laser surgeries since 1993. I was finally free for about 2.5 years and when I went for a follow up appointment they found VIN II which progressed to III by the time I had my laser surgery.

I have been off work since July 9th as it is very painful to sit for long periods of time as I am sure you are well aware.

This time I have had a couple of complications. Infection, abscesses and more pain.

I have found it very difficult to find sites pertaining to this as well as support for it.

How are you doing? Let's share some info?

Hiya Lisa and CareBear,
I just read both your stories and can relate as well. I have been "dealing" with Vulvar cancer on and off for 5 years. Both Laser and Excision were used, to avoid the complete vulvectomy. I am currently waiting for my Health Insurance Benefits to take effect so that I can, once again, have laser surgery. The wait is painful, and I'm getting "down" too. Keep in touch, everyone, and I have you in my prayers. I sure could use the support too! :)

Hi KaraD welcome! Waiting is hard to do! How are things going now?

Carebearbc

Hi Lisa, My experience with vulvar cancer involves caring for my mother who was diagnosed with VINI in July 2004. She went through it all-excisions, partial vulvectomy, simply vulvectomy, radiation, topical chemo (5-FU), and finally a total radical vulvectomy. Any questions you have I would be happy to answer the best I could. I know the Doctors tell you as little as they can get away with - Most of them. If you're lucky you may have a Dr. who will tell you as much as you want to know. I hope things are going better for you. Yes, my mother experienced depression and was down after the radiation and subsequent vulvectomy. You are in my prayers and I wish the best for you. Charlene (MeMe1's daughter)

Hello everyone,
I've had VIN III for at least 20 years. I've had so many surgeries, I can't remember how many. It started with laser and ended up with vulvectomy. They say that for a small percentage of people, it never goes away. I guess I'm one of the unlucky ones. I've neglected the disease for several years because I also have Multiple Myeloma, a blood cancer, and thought I was going to die anyway. I would have already died if not for the stem cell transplant. I'm in remission from that but now my immune system has been totally compromised and the vulvar cancer has flourished and now I have anal cancer, too. I'm having anal surgery on Friday. I don't know how much more I can take. Between the bone pain and the literal pain in my butt, I can't do much of anything any more. I'm so thankful that I have a great husband of 28 years. It makes all the difference in the world.

I had my first lazer at 15 came back level3. since then I have had 5 more and this last time I had a huge area removed and reconsturcted. It came back positive and now I have been refered to a cancer doc. my aunt gave me so really good websites.
http://www.aafp.org/afp/20021001/1...
http://www.sydneycancer.com.au/Doc...
They gave me alot of helpful info.

Hello all, and thankyou for your "posts"! I am learning alot just by reading them! I havent gotten the hang of using this site yet, to respond to mail, etc, But Im learning! I have posted in my journal, so I've gotten that far! I have you all in my prayers! See you soon!

Welcome to Everyone who is new. Having Vulva Cancer is very challenging. I too have had many, too many to count, laser surgeries. Mine started in 1993 and just had my last one this summer. It kept me from work for 2 months.

I find it very difficult to go back when you know what's going to happen. I have a check up at the end of November but when I was at an appointment in September I found out there was an abnormality. They decided not to biopsy it or anything until November as I was still healing.

I am from Canada so I know things are handled differently here.

When I first started laser treatments I was having them every 3 months. I was either recovering, waiting for surgery or waiting to see if I still had it. My children were young then.

Kara keep your chin up. It is sooo hard to wait. I think things in Canada are a little better.

Charlene, sometimes it is harder on the caregiver than the patient.

Cherri, I'm glad you have some loving support from your hubby.

Has anyone heard how lisa's doing?

Take Care

Well here we go again. Just got over the last laser surgery and went for my check up where they had to do another biopsy. Will find out next week where we go from here.

I was wondering if any body had any experiance with the effects of radiation for vulvar cancer. We are only half way through it, but there are a lot of side issues (like blader infections that get out of control). Any experiances that relate to radiation???

PS I'm not sure I'm posting in the right place for this question>