Vulvar Cancer Treatments?

I was first diagnosed with cervical cancer in 1991, 6 months later I was diagnosed with Vulvar Cancer, stage I (squamous cell) and treated with surgery (partial vulvectomy). 5 years later the Vulvar cancer returned stage II, again surgery was my treatment. Since then I have had numerous surgeries and laser for this recurring disease.
Does anyone know of any experimental treatments going on or any treatments available, conventional or unconventional? This disease is horrible, treatment is so very painful, their has to be a better way other than surgeries.

Thanks!!
Judy

Hi Judy,
I'm so sorry that you've been going thru surgery and more surgeries. As long as there's something to cut out, they want to keep on cutting pieces off of you. I was dx with HPV related vulvar cancer a year ago and had partial vulvectomy and partial vaginectomy, followed by irradiation. If you are having minor wart like recurrences, I've heard of some girls who used a cream named "Aldara" and with patience it seems to have helped them from getting further surgery for that wart. You should ask your gyn/onc for an opinion about it. It doesn't keep you from getting new ones, but maybe you can avoid being cut again. A vaccine or a cure for HPV doesn't exist, so you better keep your immune system strong, taking anti-oxidants and DON'T SMOKE, if you can.
((HUGS))
Opal

Judy, you are the only person I know who has had vulvar cancer for so long. I know several girls who has had it for some yrs and some who has had numerous surgeries from the VIN II and VIN III, VAIN and AIN. If your first recurrence was after 5 yrs, I think that was great. Most of us will have it back within the first 2 yrs. I'm glad that I passed the 1 yr mark after my surgery without recurrence and was considering myself lucky. I don't know if it helped, but I was taking not only antioxidants, but other supplements like AHCC, Amigdalin, enzyme mixtures, vitamins, barley juice, etc. Anything that wasn't going to harm, but had something to support my system. I got laser akupuncture once a week over months and started to get more sleep and tried to avoid stress. This disease sucks and even if I'm still new to it, I can feel a bit of what you're going thru. How often do you go for check ups now? Opal

I agree with all those statements. Did you use aldara cream? I have it now.

i am trying to chat with some one who has gone thru this surgerey so i dont have anyy answers but alot of questions .this vulva cancer does not sound good,i was unaware they were cuttn parts off me its hard to cope with so lookn for some one whos been there done that .june

 

On 2/25/2008 junespurple wrote:

i am trying to chat with some one who has gone thru this surgerey so i dont have anyy answers but alot of questions .this vulva cancer does not sound good,i was unaware they were cuttn parts off me its hard to cope with so lookn for some one whos been there done that .june

Hi June, I am also in the dark, but I have had laser surgery and excision surgery and survived both, there not that bad, just alot of sitz baths which are more than a bother, but they help, I went for my 6 mth check up yesterday, I knew something was wrong and there is so I am now starting on Aldara cream hopefully to help get rid of the cells again without surgery I am nervous about the side effects. June, during my second surgery they did some reconstruction and everything works fine now, My husband and I do have sex and it doesn't hurt like it did in fact barely hurts at all

Don't make yourself a wreck I did and it does not help, just follow the doctor and make sure you have a good one, I have the best in Boston it is basically all he deals in. It does suck, but these are the cards we were dealt.  Cheer up  Karen

 

 

 

surgery within 1-1/2 years, as of yesterday I am now starting on Aladar

 

 

On 7/22/2004 Judy K. wrote:

I was first diagnosed with cervical cancer in 1991, 6 months later I was diagnosed with Vulvar Cancer, stage I (squamous cell) and treated with surgery (partial vulvectomy). 5 years later the Vulvar cancer returned stage II, again surgery was my treatment. Since then I have had numerous surgeries and laser for this recurring disease. Does anyone know of any experimental treatments going on or any treatments available, conventional or unconventional? This disease is horrible, treatment is so very painful, their has to be a better way other than surgeries. Thanks!! Judy

 

I don't have this particular type of cancer, but I have had cancer twice since 1971 and I am still being followed by M.D. Anderson Cancer Center in Houston, TX.  They are the number 1 cancer center in the country.  You might want to check their website because they have been successful in numerous areas.  They saved my life 36 years ago because I had three months to live and fortunately I am here to talk about it.  If you or anyone has any questions you can contact me or go to the website for M.D. Anderson Cancer Center and you will be amazed.  Good luck!  Gerry