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August 1, 2009

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August 1, 2009

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.

The Great!

I've personally experienced the results of this organization in...

the better registration process.

Ways to make it better...

If I had to make changes to this organization, I would...

keep spreading the news.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

the enthusiasm of the staff and volunteers.

The kinds of staff and volunteers that I met were...

OUTSTANDING!

If this organization had 10 million bucks, it could...

give it to researchers for Ovarian Cancer.

Ways to make it better...

I'd like to see the name tags with LARGE print first names and "story line". For instance mine would be II breast 2003, IIIC ovarian cancer in 2006,BRCA1 positive. Also more sit and chat time, focus groups? Another thing would be to have an easel with paper near the registration table so folks could leave a note for others.

In my opinion, the biggest challenges facing this organization are...

continuing to spread the message.

One thing I'd also say is that...

I loved doing the Legacy Corner but was a little nervous and stiff-feeling. :(

When was your last experience with this nonprofit?

2008

July 29, 2009

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July 29, 2009

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.

The Great!

I've personally experienced the results of this organization in...

Everything about the organiztion seems to be first rate.

Ways to make it better...

If I had to make changes to this organization, I would...

More feedback...

Ways to make it better...

there had been better climate control in the meeting rooms and better menus and snacks.

When was your last experience with this nonprofit?

2009

July 25, 2009

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July 25, 2009

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.

The Great!

I've personally experienced the results of this organization in...

reaching out to ovarian cancer survivors and encouraging them to become active in their communities to advocate for early detection research.

Ways to make it better...

If I had to make changes to this organization, I would...

encourage more collabrative actions with NOCC to further the advancement of research.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

attending the Ovarian Cancer National Allicance in Washington DC and meeting other ovarian cancer survivors.

The kinds of staff and volunteers that I met were...

very dedicated and educated on the cause to fight ovarian cancer.

If this organization had 10 million bucks, it could...

make inroads to finding a test for early detection and a cure for ovarian cancer.

Ways to make it better...

I had more time to learn how to be a better advocate for other women.

In my opinion, the biggest challenges facing this organization are...

obtaining funding to support research to discover a test for early detection and research for a cure for ovarian cancer

One thing I'd also say is that...

this organization is a God-send to ovarian cancer survivors and their families.

When was your last experience with this nonprofit?

2009

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