The Ovarian Cancer National Alliance changed my understanding of life as a survivor of ovarian cancer. First, as a client, I learned about my disease through their education programs. Then I learned about empowerment, testifying on behalf of other women with the disease. Through their outreach efforts, we engaged the underserved and under-informed. We became the voice of patients to healthcare providers and policy makers, and made substantive change. This is a charity that affects every aspect of ovarian cancer - patients, clinicians, researchers, donors, caregivers, lawmakers and the public. Serving on their board is the most honorable role of my life.
As an Ovarian Cancer Survivor I have found great strength, hope and determination after having been associate with OCNA. The staff is very friendly, willing and knowledgeable. I have attended 4 OCNA conferences and participated with 4 Capital Hill Days. The conferences are structured in such a way so that there is always a interesting speaker or lecture to attend
This was my second conference and once more, I loved it! I attended with the local Memphis leader and realize how much work we have to do.
This was my first OCNA conference and I was deeply impressed by the personal as well as the professional aspects of the program. The leading research was presented in a very focused manner. The tough issue of helath care reform was presented with clarity and directness. The emotional aspects of cancer surviorship were addressed and supported and nurtured. Every stage of the conference was first rate. It was a winner.
How to tell my story -- from the depths of hell-Well let first start off with the diagnosis process for ovarian cancer symptoms or shoud I say the lack of disagnosis of the symptons. My first encounter occurred when the symptons of ovarian cancer started screaming in July of 07. I went to my GP because I felt bloated and my pants were getting tighter around my stomach. My GP said it was probably because I was going into menopause and she sent my on my way. So I didn't think much more about it and resigned myself to a larger size and that the bloating would eventually go away. Over the next two weeks, I needed to urinate frequently or it was more like the sensation of pressure and needing to urinate. So, I was seen by a nurse practitioner who told me it was probably a urinary tract infection and sent me on my with an antibiotic perscription. Two weeks passed by and I still did not get any relief from bladder pressure, plus now I was having trouble having a bowel movement. So again, I went to my GP, explaining my symptons and she prescribed a stool softner-Colace and Lactose-- and sent me on my way. Another week passed and I still had bowel movement problems, urinary pressure, and bloating. I went in to see my GP and finally, this time she performed a rectal pelvic exam and felt a large mass. She then scheduled a transvaginal ultra sound and blood work. I didn't know what to think and she didn't elaborate on what the possibilities of the mass meant. The transvaginal ultra sound revealed two large masses attached and covering over one the ovaries and my CA 125 read 191. I received a call from my GP the same day of my ultra sound and she said she wanted to see me the next day because the ultrasound looked "suspicious". This did not sound good to me. When I consulted with my GP, she said because my CA 125 was elvated and the masses looked "suspicious" she was referring me an on oncologist. That was the when I got a lump in my throat and felt scared for the first time during this whole ordeal. Oncologist meant cancer. When I went to see the surgeon gynooncologist, I took my sister and my niece because I wanted another set of ears to hear what was going to be said. The surgeon told me he was confident that the masses were beign because of my age--48 years old--and I was in good health. He didn't even want to suggest treatment options such as chemo because he didn't think it was necessary to go down that path. The masses turned out to be cancer--Stage IV ovarian cancer. The surgeon said he was sorry that it turn out to be cancer but he performed ultimal debulking and got rid every visible sign of cancer he could. The chemo would get any residual cancer including the mass on my liver. That's the first chapter of my story. As you can see the symptons were not silent--they were screaming yet I did not know anything about the symptons of ovarian cancer or I would have been more insistent on having my GP perform a rectal plevic exam from the beginning just to rule out cancer. But none of the medical professionals connected the dots until weeks had passed and the symptons became more acute. I don't know if it would have made any difference in the staging--I could have already been at stage IV. But, that's not the point--The point is educating women on the symptons and educating the GP's to first rule out ovarian cancer by performing at least a rectal pelvic exam when women first complain about the tell tell sypmtons of ovarian cancer. I am in remission now and am grateful to my family and friends who gave me the encouragement and strength to battle this monster. Let's find a test for early detection so the same story doesn't need to be told over and over again.