ACS CAN: Your words matter

(by Susan) The American Cancer Society Cancer Action Network is a great source of information about legislative action in your community and nationwide that affects screening guidelines, insurance coverage, and standard of care for cancer treatment and detection. In a world where the problems loom ever larger and our ability to reach out and help each other feels so limited, ACS CAN is focused on providing you the information you need to email your Senator, participate in events on the Hill or at your statehouse, or just be informed about how the latest news may affect cancer patients in treatment or in recovery.

The ACS CAN also recruits cancer survivors and those who have loved someone with cancer to speak at Congressional hearings, hearings on the state level, and other events where your words can make a difference. I’ve responded to two requests this week, actually, and I am waiting and HOPING to hear that I’ve been selected to speak on the Hill on February 10. I need to talk about cancer research funding and what a difference research and clinical trials can make. After all, 20 years ago, only 1-2% of patients with IBC survived to the five-year mark. Today, 50% do.

I’m one of those 50%. I have to be. I have way too much to do to fight a relapse. And I WILL NOT let cancer beat me.

It’s not completely up to me, you know. My survival depends critically on new advances in research into inflammatory breast cancer and other locally advanced breast cancers, those that kill far too many of the women that they invade. Right now, there are only a few studies that are even investigating the mechanisms involved in inflammatory breast cancer. Komen sponsors one. The Inflammatory Breast Cancer Research Foundation sponsors another. The others must compete against much more popular cancers in peer review, and since not many of us are around to advocate for IBC and other locally advanced breast cancers (LABC), they rarely receive funding.

We must change that. We must.

And we must do it before my friends and I have a recurrence, or more of our friends are diagnosed.

To find out more about how you can speak out against cancer in a real and meaningful way, visit the ACS CAN web page and sign up for updates to your inbox. You can also friend ACS CAN on Twitter and Facebook.

Cross posted at Toddler Planet.


2 Responses to ACS CAN: Your words matter

  1. Lyn says:

    I hope you get chosen Susan. IBC, though has come a long way, is still extremely dangerous and misunderstood. I met another IBC patient, who is a very good friend now, when she was diagnosed a month after me. We have the same doctors, surgeons, radiologists, support- and I am supposedly cancer free and she is not. She did not respond to the chemo as I did, and the IBC grew the entire 7 months she endured horrible chemo. She had no spots besides the breast at the beginning of diagnosis and the night before her mastectomy they found it had grown to her liver, her lung, and her spine. During chemo. How is it that I almost perfectly responded to chemo, and my dear friend did not? How is it that I am supposedly ‘cured’ and my friend is now undergoing radiation on all points of her body and doing daily chemo once again? There must be more research, and more funding to make this happen.

  2. whymommy says:

    Amazing, Lyn. I didn’t realize until I talked to Ginny how very little research there is on IBC and the Locally Advanced Breast Cancers. Of course general breast cancer research is helpful (that’s where our chemo drugs came from, as you know), but IBC presents such an opportunity to intervene in an aggressive, fast moving cancer. I sometimes wish I had gone into research medicine, so I could propose and do something about it myself.

    But instead we can talk. And stories like yours are important. Thanks for the comment.

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