Changing the conversation

Deadline 2020After a weekend workshop with 800 energetic, amazing, committed women (including 8+ incredible bloggers and 30+ metastatic women fired up to fight for the END of breast cancer), I have new energy and new spirit and new FIGHT in me, both against this horrible disease in my own body and against its formation of tumors and spread in bodies (called metastasis) in general.  There are some exciting ventures afoot, and hundreds of fired-up women canvassing the Hill today, talking to their Senators, Representatives, and the Legislative Assistants (LAs) that make things happen on Capitol Hill. 

There is hope – but there is more than hope – there is now a DEADLINE and a plan for the END of breast cancer tumor formation and metastasis: January 1, 2020.  Ridiculous? Perhaps.  Daring? Definitely.  More details will be coming, interspersed here with my usual stories of motherhood and science and friendship, and I’ll be introducing you to some amazing women, my fellow #cancerrebel warriors who STAND UP and FIGHT BACK and will not be comforted by pretty colors or hope.  We need more than ribbons, my friends.  We need RESEARCH that will bring about BIG change, more than incremental changes and improvements in the drugs that poision us (but poision the cancer just a little bit faster).  I love my chemo, don’t get me wrong, but wouldn’t it be great if we could SUPPRESS the tumor cells into dormancy or make the surrounding tissue UNWELCOMING so that they would move on, and “leave the neighborhood” entirely?  There is promising research, and it is exciting.  I can tell you more about that in the coming weeks if you like, but today I want to echo four statements from the conference speakers (with citations), and I hope you can hear the urgency through your computer screen or smartphone:

1. More than 500,000 women still die of breast cancer each year.  “The five-year survival rate for women diagnosed with localized breast cancer is 88-93%; the five-year survival rate for women diagnosed with metastasized breast cancer is just 15%.”   Fran Visco, NBBC President (the NBBC Baseline Status Report states that the first statistic is 98%, citing Welch et al JAMA 283(22): 2975-2978).  We hear all the time about survival rates improving – but for those of us with metastasis, there is a long way to go.

2. “Over 30% of women initially diagnosed with earlier stages of breast cancer will develop metastasis” — and no one knows which ones. – Musa Mayer, survivor and advocate, citing O’Shaughenssy, Oncologist 10: 20-29, 2009.  If new research can prevent secondary metastasis, women with primary tumors can live longer and healthier.

3. “Age-adjusted cancer mortality has not changed significantly in the last 60 years: it has decreased just 5%, while heart disease decreased 65% in the time period 1950-2005,” – Sharon Begley, journalist.  We can do better.

4. “Only 5% of cancer research funds are spent on metastasis, yet it kills 90% of all cancer patients.” – Dr. Patricia Steeg, researcher, in Sleeman and Steeg, EurJCancer 46:1177, 2010; Science Daily 1 June 2010. 

Can we cure cancer? Gosh, I hope so.  Can we prevent tumors from forming and metastasis from spreading?  We must.

What can be done?  Steeg urges new “secondary metastasis prevention” clinical trials that could occur even if experimental therapies (successful in mice) did not shrink existing tumors (there are a number of studies that show no change in the primary tumor but BIG changes in metastases.  All cancers are not the same.).  Success would be defined as MORE TIME for patients with (for example) bone mets.  More time.  I want more time.  To find out more and to tell the NCI this work is important, please leave a comment at the NCI site (Steeg’s provocative question WS-90) too.  Thank you.

For more of the conversation, please follow these #cancerrebel bloggers and warriors: Elizabeth@ccchronicles, @pinkribbonblues, @kathikolb, @uneasypink@jodyms, @chemobabe@yscbuzz  – and learn more about #deadline2020.  If you’d like to hear more about the plan for Deadline 2020, new theories on metastasis, tidbits about cancer treatments 4000 years ago, what dormant tumor cells are, why Dr. Susan Love calls lifesaving surgery/radiation/chemo treatments slash/burn/poison, or how physicists are taking a new look at cancer cells, why, just ask and I’ll happily share with you what I learn.


10 Responses to Changing the conversation

  1. Ccchronicles says:

    Well said Susan and I was so excited to meet you too! What a weekend! I felt like we were enveloped in Wonder Woman’s golden lassoo of truth! Breast cancer truth. Because nothing but the truth matters from hereonin. Uncomfortable for people to hear? Yes. But so is having breast cancer. It’s not pretty in pink.

    • Absolutely. Yes. It’s an uphill battle but there is NEWS about new and promising research in cancer and it can get to clinical trial IF people understand how primary and metastatic cancers differ. I’m inspired.

  2. I can hear your renewed vigor. Its beautiful.

  3. NYFriend says:

    Very exciting news! Looking forward to hearing more late.

  4. nancyspoint says:

    I just discovered your blog via Uneasy Pink, somehow I’ve missed it, but I’m happy to find it now! Thank you for attending the conference along with the other cancer rebel warriors. Even though I was not able to attend, I do consider myself a fellow warrior. There is important work to be done isn’t there? Count me in. Looking forward to reading more…

  5. Kathi says:

    Excellent post, Susan. It was wonderful to meet you at NBCC. Feeling the energy there & knowing there are so many of us Cancer Rebels out there is one of the few things that has given me hope amid the sobering information you summed up so well here. Big lopsided hugs!

  6. Kathi says:

    P.S. I LOVE the “Us Lucky” post.

  7. Beckye Estill says:

    Excellent post, Susan! Re-posting on FB and Twitter. Godspeed to the researchers. The cure can’t come too soon.

  8. […] friends Susan at Toddler Planet and Elizabeth at The Liberation of Persephone both IBC survivors like me, also wrote about these […]

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