I know I'm taking a break but...

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leesag
leesag Member Posts: 621 Member
edited March 2014 in Ovarian Cancer #1
I know I'm taking a break but I wanted to repost this here. This was in response to a post on Inspire, and I think perhaps my "break" has helped me to begin to sort out some stuff. I thought I'd throw it out there for you to comment on. This was a response to the lack of OVCA attention.


"Part of the issue is that we are an extreme minority. I checked some stats in my state (it was an OVCA website, can't remember the address) and in 2006 only 460 cases of OVCA were DIAGNOSED in the state of Maryland. All things considered, once again I appear to be a high achiever. Not only was I diagnosed in 2010, but I also was diagnosed at Stage IIIC with a CA125 of almost 10,000! lol

For a long time I was bitter about the discrepancy between the pink and the teal. But I've since made my peace with it (sort of). Honestly, we benefit from the research dollars spent on pink, and our "orphan drug" status as a "minority cancer" does carry with it certain benefits to drug companies.

In the long run, what matters is that we educate our friends and they carry the message forward. Since I've been diagnosed, many of my coworkers, who have had issues that been ignored by their docs for years, have begun to speak up and self advocate. The stats say that they probably don't have OVCA, but the reality is that the symptoms they have ARE being taken seriously now and they are getting the testing and treatment they need to alleviate those symptoms.

Does it suck that we don't have cure or a Teal Bandwagon to follow? Absolutely. But on the other hand, I know of three people who have better medical care because I told them my story, and they spoke up for themselves.

My motto is no longer, it is what it is, but rather, "it is what you make it." Know the symptoms, know your body, and know that you are in charge of your health care is my message to others. OVCA or no OVCA (and I pray that none of my friends ever has to face this disease!)

Hugs
Leesa

Comments

  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #2
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    Me, too, Leesa. I just try
    Me, too, Leesa. I just try and shrug it off. In this morning's paper there was an OP Ed piece written by a State Rep, outraged because Avastin may not be available for breast cancer patients if the FDA does not approve it for treatment of BC in Dec. Hey....how ovarian cancer? What are we, chopped liver?
  • Mwee
    Mwee Member Posts: 1,338
    #3
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    Dear Leesa
    I hope you and your husband are doing well. Our only hope is that with all of the funds that have been diverted into breast cancer research, new drugs will be developed to help "other" cancers. My brother was diagnosed with pancreatic cancer last spring and he's just about to start his chemo and low and behold, he'll be doing gemzar just like me!
    (((HUGS))) Maria
  • Susan523
    Susan523 Member Posts: 231 Member
    #4
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    Pink
    I know what you mean; I found myself getting very resentful in the month of October, when EVERYTHING was pink. Even the NFL~

    I had tried for the last 6 months to contact our local newspaper's editors, asking them and reminding them that "September is coming. September is the month for OVARIAN CANCER. Ovarian Cancer's color is TEAL". I sent them symptom cards, too, via 'snail-mail'.

    There was no story; no awareness spread.

    I decided to spin it around in my head, as I was getting so angry. So now when I see PINK, I tell people, "did you know that PINK is linked with TEAL?"..... and I go on to tell them the symptoms, the BRCA testing, etc.
  • MoMomsa
    MoMomsa Member Posts: 16
    #5
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    Pink
    I have to agree that pink seems to be the "in" cancer color but, that's ok by me. If it brings more awareness or even, I dare say a cure, it can only benefit ovarian cancer. And yes, not a lot of people know the Ovarian cancer signs, I didn't either, thinking, "This is what the 40's bring?" Darn! However I found out the hard way. Since I'm writing a book, I'm enclosing it in the last chapter....My bout with Ovarian cancer and Thyroid cancer too. I am adding the signs so if it helps one woman, then that will be worth it. I read your stories and know how fortunate I am. It makes me feel the push that much stronger. My journey has been easier than most in this forum, but the emotional one takes it toll. All of you are extremely strong, I hope those around you see it. In the meantime, since I have a voice, I'm going to use it, in writing....

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