I've joined this site because I saw Michelle Robson on Better Nashville (TV show) speaking of many of the symptoms I am experiencing. I am desparately searching for answers about.....perimenopause, thyroid, hair loss, weight gain, brain fog, fatigue, acne, insomnia, frequent periods with spotting in between, fibroids.....and more. Why is it that we have to suffer so? It shouldn't be this way. Currently, I have not gotten good answers or relief from my Dr., so, I am going to have to become my own advocate. In addition, in hopes that maybe I can help someone in return, I would like to share with you my journey with the following:
The "Other" Gynological Cancer
Not very many people have heard of Vulvar Cancer. I don't even like to say the word. Sadly, this is true with the majority of people. This is not a subject that is comfortable to talk about openly, but the truth is, Vulvar Cancer is something that is becoming more common....and yet little to no information is available. When I was diagnosed in December, 2008, I had no knowlegde of this form of cancer and was extremely frustrated with the lack of information. So I'm writing this to bring more awareness to the "other" gynocological cancer.
Breast Cancer and Cervical Cancer seem to get the most press and exposure, possibly due to the higher number of cases, but the leading cause of Cervical Cancer can cause multiple other cancers. And yet, no one ever talks about them. Cervical, Vaginal, Anal, and Vulvar Cancer can all be caused, but not always, by HPV. (There are cases of Vulvar Cancers that are not related to HPV). There were over 3,900 new cases of Vulvar Cancer in the USA in 2010 and just under 1000 deaths in 2010 due to this cancer. While this is still a rare cancer, it is estimated that 1 in 387 woman born today will be diagnosed with Vulvar Cancer in their lifetime. It is becoming more and more common.
If caught early the survival rate is very high. The problem is making sure that you are going to your doctor and having an exam every year and bringing ANYTHING strange to their attention. I did...and they still ignored it. I had what appeared to be a very small skin tag, which the nurse practitioner dismissed as such. I don't what told me to do so, just a gut feeling perhaps? One day without an appointment, I walked back in to the Dr.'s office and mentioned it again. The Dr. said he would take a look, which ended up being a biopsy. One week later, I was diagnosed with VINIII squamous cell carcinoma followed by a wide local excision of a portion of my Vulva. One year later, January, 2010, it returned followed by laser surgery. Needless to say, this was a life changing event. This is always something that could return, and because of that, it is always in the back of my mind.
No one likes to talk about cancer in their "private parts", but if you have had irregular pap smears, or have been diagnosed with HPV....you need to be aware that you are at risk for these cancers. Do a self examination. Sounds awful, but it may save your life.
I have found a very supportive facebook group consisting of some of the finest, strongest, and uplifting women I've ever met. My cancer has been removed for now, and I am living a "normal" life. Some woman have not been so lucky. They are left with their lymph nodes removed, or with it spreading to other organs. I know how much of a struggle it was (and still is at times) for me physically, sexually, spiritually, emotionally, and mentally.
I am hoping that this didn't offend anyone. I know it is not a topic that people like to discuss. But if I can prevent one woman from going through what I went through, it will be worth it.
For more information on this cancer:
This last site was developed by a wonderful woman who has allowed us to share.
Thank You, Carol! You are an inspiration to so many of us.