Vulvar Cancer Support Group

Hello RAL,

It is hard to find people to talk to about this. I have only had the diagnosis since Jan 2009.I belong to this group and gyn gals on Yahoo...They have both been a great help .Oleander

I dont know if this went threw so let me know Tucker66. I sent a message to you

I would like to talk to some one who has vulva cancer I am recoving from surgery now Waiting for result of my biopisies they had to be sent to Boston.Why I dont know I had this disease for 11 years cant seem to find a cure please responde. Thank you Tucker66

I was diagnosed with carcinoma in situ (Stage 0) in mid April. It was so hard to talk about it but I must have had some sort of breakthrough because, at this point, I'm considering performance art in Times Square;) Just kidding. But I will find an outlet for the crazy feelings and hopefully a sense of purpose or accomplishment too. I refuse to be ashamed and carry these feelings and go through these experiences in isolation.

Hello, I just joined the support group today. I also have been dealing with the fears,frustrations and concerns of vulvar cancer for many years now...Over ten yeras to be exact...I had a partial vulvectomy when i was 38 years old and today at the age of 49 i still live with the fears of it coming back...It is great to have people who offer understanding and support when good days just seem to go bad... I am here to share,listen and learn..and I am very happy to know there are others out there like yourself who are willing to do the same.....

Hi,

I too am looking for someone to chat with who has a similar diagnosis. I am 43 and I just had a partial vulvectomy and laser surgery in April. I had been suffering with this for over 10 years before I was finally treated. I just started using Aldara two days ago and am having a few side effects but it is nothing compared to the pain I was in before.

I am so happy to find someone else to share this with. I have a hard time with people asking me where the vulva is before I can even explain that I had cancer there!

Hi, I have just joined this group and I would like to know the reactions of people who have had to use Imiquimod (Aldara) cream. I have been using it for five weeks now and am in a dreadful state with open sores, bleeding and awful pain. Has anyone else experienced these affects?

Hi,

I have been using Aldara for the last 3 months. Yes, I have experienced open sores and bleeding, some days it is hard to tell if it is working or making it worse. I find that taking a daily lukewarm bath with Epsom salts helps. I have been wearing skirts only. I find wearing pants uncomfortable. I have had other side effects which threw me off. Joint pain and muscle pain. I have discovered one benefit..... my face is very clear and fresh looking. My husband says that I look 10 years younger!

Have you experienced other side effects other than those you already described?

How long do you have to use the Aldara?

Lynn

Hello, I am new to all of this I was diagnosed with vulva cancer a little over 2 weeks ago. My Gyn Dr. was not to clear, in fact he only told me I had cancer not what kind and I would need surgery that would leave it hard for me to have sex, but not to worry because I could have reconstructive surgeries after. I had to call and ask the nurse after the initial shock, what kinda cancer I had. They made me an appointment to see a gyn oncologist 150 miles away from my home. I have to wait 10 days for the appointment. I would love to talk to women who know whats going on.

Isle62,

I had so many questions after my diagnosis but I was so shocked from hearing the news that the only thing I could think to ask him was how much time I would miss from work. Once I got home I wished I had asked more questions. I found a link for the Mayo Clinic that talks about Vulvar Cancer, it even provides a list of questions to ask your doctor. I found it really helpful. http://www.mayoclinic.com/health/v...

Take good care of yourself. Even though it is rare that you will find someone else who has the same kind of cancer, we are out here and you are not alone.

Lynn