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APONI_KB's Photo APONI_KB Posts: 503
6/3/17 9:55 A

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I'm sorry to hear this. I had the genetic testing done, my insurance paid for it though I think because I was on the younger side when I got BC with no family history. Longest two weeks of my life.

How are you doing now?

"There's so much to discover,
think how much wiser we'll
be at the end of all this"
doctor who



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BECKYANNE1's Photo BECKYANNE1 SparkPoints: (255,899)
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4/28/17 7:07 A

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Thank you for your post. Due to other complications, I had to have a major surgery after having BC and my Dr offered to remove my ovaries at that time. I didn't have to think twice on that one. I had the BRCA1 test done because my mom was also diagnosed with BC. She didn't want to do the test because of the cost so I did it and my ins. Co. paid for it. Luckily it was negative. I too am a 5 yr cancer survivor this year.

Becky


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CARO488's Photo CARO488 Posts: 976
4/23/17 5:46 P

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Thank you for your message and for your fight.

Dance like no one is looking.

Love like you've never been hurt.

Live like you'll never die.


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PINGPONG6's Photo PINGPONG6 SparkPoints: (30,380)
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4/20/17 7:01 P

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Hi all,
I have not participated in this team for a long time, and life has not been kind while I was gone. After breast cancer treatment in 2010, I finally finished 5 years of Arimidex in July of 2015. I saw my breast surgeon in Nov 2015 and said goodbye to her as a 5-year survivor. In Dec 2015 I started having pelvic pain and went to my primary care in Jan 2016. After a number of normal tests I had a CT scan in mid-Feb. It found a suspicious mass on my left ovary.

10 days later I saw an oncology gynecologist and 3 days later on Mar 1st I was in surgery. It was ovarian cancer, stage 3B. My world crumbled before my eyes. Ovarian cancer is one of the most deadly of cancers, almost never found early and frequently no symptoms at diagnosis. I was lucky I had the pelvic pain; most ladies don't. So after 4 1/2 months of chemo and a long (to me anyhow) recovery, I have now been in remission for 9 months, thankfully.

My mission is 2-fold. First I want to spread awareness about ovarian cancer. Nothing personal ladies, but I have now learned that nearly all of the money for research for female cancers has gone to breast cancer, which has a better survival rate. And there is no screening test available for ovarian cancer, which is why it is usually found late, frequently too late. There have been no changes to the treatment for it either; my treatment was the same as was used 20 years ago. There are a number of clinical trials in progress, but many cannot participate for various reasons. None are for first line treatment, only for recurrences. Having been there myself, I would rather have breast cancer given a choice.

Second, I had genetic testing done last summer, and I am BRCA1 positive, as are other members of my family who have now been tested.. I asked to be tested when I had breast cancer, but was told I didn't "qualify". Though there is cancer in my family, it wasn't breast or ovarian that we knew of, but then there were almost no women in my family for several generations and some get lucky. I view this as negligence on the part of the medical and insurance communities. Had I been tested when I had breast cancer, I would have had the prophylactic surgery and probably avoided the pain and suffering I have endured from the ovarian cancer. And the primary reason for not testing is to save money, based on statistics.

Ladies, we need to demand that these issues not be ignored. I believe that anyone diagnosed with either breast or ovarian cancer should be tested (if they wish) for BRCA1, BRCA2, and the lesser known Lynch Syndrome gene. I also believe that ovarian cancer research has been neglected for funding because men who make those decisions can't see the results of it as they can with breast cancer. Unfortunately we still have a male-dominated society, even though I have seen great progress made in my lifetime. But these 2 issues cannot and should not be ignored. Quite literally, lives depend on it.

OK, now I'm off my soapbox, and I'm glad to be back. I'd love to hear comments from any who read this post.

Thanks, Myra



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