Thursday, March 14, 2013

New Study on OVCA

In the last week I've seen a number of articles and the news clip below posted on twitter and other sites. Apparently someone is finally taking notice of the fact that many women who are diagnosed with ovarian cancer are not getting the care they deserve.

According to a New York Times report, only about a third of women who are diagnosed are recieveing treatment from a specialist and are only seen by general surgeons who are not experienced in treating ovarian cancer.

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Its also interesting to me that this study focused on women who are diagnosed with advanced stages, and how not getting aggressive treatment is reducing their chance at survival. But for me, it was exactly the opposite. My original doctor wanted to treat me aggressively - hysterectomy, chemotherapy, etc. All of that without even knowing how extensive my cancer was already!

But when I got to a specialist, the fantastic Dr. R, he knew immediately that it wasn't the appropriate treatment for me. I suspect he knew pretty early on that my cancer wasn't likely to be advanced - but of course he couldn't actually tell me that until he knew for sure. He also understood, before I ever mentioned it, that having a hysterectomy wasn't the best course of treatment. Even though it might be the "safest", I'm forever grateful that he wasn't just thinking about my survival. He was considering my actual quality of life. He knew that at 31, with no kids, that having a hysterectomy would have been devestating. Especially if they learned afterwards that the cancer had not spread.

He has always been very honest and forthright that if it ever IS found to have spread, those organs will have to come out. But he wasn't going to jump to conclusions based on what is "usual" in ovarian cancer. He has seen enough cases to know that each woman, and each cancer is different. This was obviously something that my first doctor lacked - she based her treatment recommendations on what is "typical". She assumed my cancer would be advanced and that being aggressive was the way to go. Oh how glad I am that she was wrong and I didn't have to find out the hard way.

I was also struck by a quote from the study, that echoed something I'd heard another survivor say at a recent meeting with my local chapter of the NOCC.

"If this was breast cancer, and two-thirds of women were not getting guideline care that improves survival, you know what kind of hue and cry there would be,” said Dr. Armstrong, who was not involved in the study. But in ovarian cancer, she said: “There’s not as big an advocacy community. The women are a little older, sicker and less prone to be activists.”

I've struggled with how best to advocate for the ovarian cancer cause. Part of me wants nothing to do with it honestly! I mean, I didn't exactly sign up voluntarily to be part of this group, did I? But after my initial experience, I've been trying to figure out how to reach out to women who are like me. Young, diagnosed in early stages, the ones who don't fit to usual "type" of woman with ovarian cancer.

So, I've started with the NOCC 5K - awareness is obviously very important! The more people who know the symptoms, the more women who might be diagnosed early. And if more women get the right treatment, hopefully those terrifying survival statistics will change. It's not the end all be all, but everyone has to start somewhere.

Thanks again to everyone who has donated or signed up to walk/run with me. (Click the link above if you still want to donate!) I'm so excited to celebrate how far I've come and how lucky blessed I have been.

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