Monday, August 9, 2010

Why We Do What We Do

Everyone has a passion.  Mine is cancer.  Cancer has dodged in and out of my life since I was 13. To this day I follow cancer news and developments, sweat it out when friends and those I love are tested, and pray for them and the doctors, nurses and technicians who care for them.

Today a story by Denise Grady in the NY Times regarding early puberty in U.S. girls was a bit of bad news for the long-term cancer forecast. This could portend an even larger population at risk for breast (and other) malignancies as these girls grow into women. Both circulating hormones and fat are implicated in breast cancer.  Another study published recently says that each pound gained after age 21 -- successive weight gain with age -- adds an increased risk for breast cancer. To top it all off, the American Cancer Society also reported today that growing waist size does not bode well for anyone's long-term longevity, but especially for women.

So with these reports I've marked different points where I stick my advocacy flag in the sand.

Since attending the innovative SXSH "unconference" in March -- Sharing Engaging Social Health -- I've been struggling to apply the "relational" aspects of social media to bear on some of the very real difficulties of being treated for cancer.  Breast cancer, unlike its more difficult sister -- ovarian cancer, provides those diagnosed with a dizzying array of choices based on type, stage, and genetic characteristics that range initially with surgery, choice of plastic surgery (surgeries), chemo- therapeutic agents, radiation, and THEN hormonal therapy that can last up to five years.  Reports indicate that fewer than half of breast cancer survivors (in particular young women) are likely to complete the treatment course; a finding I blogged about in July.

A flag in the sand and a question no one can answer: what might happen in the next 10 - 15 - 20 years if such a large portion of young survivors don't take this medicine? Was their cancer already cured without hormonal therapy or was a potential insurance policy ripped up before it was even read?

As I continued to talk about this issue with people my post evolved into a proposal, and the proposal into a submission for the first interactive health panel at SXSH, the film, music and emerging technology festival that takes over Austin in March. Then late last week I heard that my proposal,  'Social Media: The RX for Improved Adherence?' was accepted for the SXSH Panel Picker, the second phase of the selection process.  

I'm proposing a full-fledged web community that is specifically devoted to aromastase inhibitors, with feeds of women's conversations, posts from oncologists, posts from women who comply with treatment, and those those don't. The objective is for women to have a place for information and support about what might -- for some -- be a life-saving treatment element.

Look at it this way:  1.3 women worldwide are diagnosed with breast cancer yearly. Approx-imately 75% of them, or about 975,000 women, would be eligible for hormonal therapies.  That's 975,000 sisters -- White, Afro-American, Latina -- who need a place for credible information, support, and exchange.  On their terms.  

You can help me and Colleen Young (on Twitter as @sharingstrength) who is a co-collaborator with me, in casting your vote on the SXSW  panel picker beginning Wednesday.  You will have to create an account with a log in.  As soon as the page is live I'll post the link.

We can make a difference!  Let's bring this program to Austin next March!

Thanks in advance for your support,

3 comments: said...

Bravo! I like it! You're right.. It's scary to think what might happen to the women who stop treatment. I talked to a man w/breast cancer who doesn't want to take Tamoxifen. Hadn't even thought doctors might put a man on aromatase inhibitors. Sounds like a good resource, Jody.


Anonymous said...

I stopped tamoxifen after 2 1/2 years. Life was miserable, painful, and scary on that drug.

I have a proposal up for #SXSW as well. We are working on similar paths and should really talk at some point. Alicia

Annemieke said...

Dear Jody,

So very proud of you for getting proposal selected. Just let me know when and how to vote for it!!
This blog once again makes it very clear what dangers lay ahead if young women stop taking their medicine prematurely. Thank you for teaching me again! Big hug, Annemieke