October’s Arrived, So I’m on My Soapbox

Credit: benefits.com

I didn’t know how I was going to write about Breast Cancer Awareness Month this year, and then I saw this message on Facebook, posted by a guy I knew in high school:

Lost my mother, grandmother (and both her sisters) and great grandmother to breast cancer. I get checked every year by my doctor.

#getchecked

#protectthetattas

I immediately sent him a private message: “Have you had genetic testing for BRCA and other mutations?”

Guy: “My brother has since he had daughters. Was negative. But he and I are vastly diff makeups. He’s def from my father’s DNA. And I’m sure I’m more my mother’s. Never got tested since I only had boys.”

I couldn’t have asked for a better set-up!

Me: “You should consider consulting with a genetic counselor because men, not only women, can pass mutations on to their children. So, if you carry a hereditary cancer mutation, each of your sons has a 50% chance of carrying it—and a 50% chance of passing it on to their own kids, both sons and daughters. Happy to discuss further if that would be helpful. I’ve learned all of this the hard way, and I work hard to make sure other families don’t have the experiences that mine did. Also, some of these mutations are much more prevalent among Ashkenazi Jews than they are in the general population. I’ll also butt out if you think this is none of my business.” 

Guy: “I appreciate it! I will pursue it further.”

Me: “Excellent! Please keep me posted.”  

If, in fact, Guy or either of his sons turns out to be a BRCA mutation carrier (pfth, pfth, pfth), they’re at increased risk of male breast cancer, prostate cancer, pancreatic cancer, and melanoma. So, I hope he follows through, gets genetic counseling, and does whatever might be necessary to protect his own health and that of his sons.

To learn more about hereditary cancer, visit FORCE: Facing Our Risk of Cancer Empowered, a national non-profit organization solely devoted to providing resources and support to the hereditary cancer community. To find a genetic counselor in your area, visit the National Society of Genetic Counselors. Visit JScreen.org to learn how you can test for hereditary cancer mutations from home and consult with a genetic counselor about the results.

Yes, It’s ThatTime of Year Again

Friends,

You know the least favorite part of my work on behalf of FORCE: Facing Our Risk of Cancer Empowered is asking for funds to support the critical work this organization so effectively accomplishes, but as Liza Minnelli rightly sang in “Cabaret,” “Money makes the world go round.”

You also know that your philanthropic donation (no matter the size) will help ensure that FORCE is able to continue to raise awareness about inherited genetic mutations (most people who carry them are unaware of their status), offer emotional support, provide practical, evidence-based resources and scientific updates, advance targeted research, advocate for protections on behalf of those in the hereditary cancer community, and more. Most vital of all, thanks to FORCE, no one has to travel this journey alone.

Lastly, you know that the FORCE community and the work to which we, a cadre of mostly volunteers, are deeply devoted mean so much to the countless individuals and families affected by hereditary cancer-causing mutations – including me.

For these reasons and so many others, I appreciate your support of this cause and am extremely grateful to have you in my life.

From the bottom of my heart, thank you,
~ Jane.

Last Tuesday marked the fourth anniversary of my prophylactic bilateral mastectomy (PBM) and reconstruction.  It was surgery that I believe saved my life.  FORCE: Facing Our Risk of Cancer Empowered has been equally life-saving in my BRCA journey.  If you're the least bit inclined to support this incredible organization during its annual fundraising campaign, I'd be grateful. The letter below provides addition information about this year's campaign and my ongoing involvement with the organization.  

July 21, 2015

Dear Friends and Family,

Thank you for visiting my FORCE fundraising page!  

Four years ago today, I underwent life-saving, life-changing, and life-affirming surgery that kept me in the hospital for five nights, including one in intensive care, and then at home recovering for more than eight weeks.  As tough as it was, I'd do it all again in a heartbeat.

No April 2 Redux

Dear The Mums,

Today is April 2.  Three years ago it was a Friday.  We were three days into counting the omer and Barbara Kline Shapiro's father had just died. His funeral was that morning and Daddy went, which meant that I was at the hospital by myself when Dr. S. told me, using his less-than-perfect bedside manner, that the metastatic breast cancer that had resulted in a pelvic fracture that was causing you such excruciating pain was all over your body--in your bones, in your liver and in your lungs.  Of course you were there, too, but the Fentanyl made you loopy and you sort of drifted in and out.  Lucky for me, Elliott and Shira showed up sometime during that morning and then I wasn't alone anymore.

Interestingly, on this year's April 2, I attended the first-ever benefit screening of "Decoding Annie Parker," a not-yet-released feature film about the discovery of the BRCA1 gene. Lucky for me, it was right here in New York at the Directors Guild Theater on the west side. Additional screenings -- sponsored by the The Basser Research Center for BRCA -- are scheduled for this fall in other cities, including Los Angeles on September 17 and Philadelphia on October 2.

The film traces the life of Annie Parker, who lost her mother and her sister to breast cancer before she herself battled both breast and ovarian cancer.  Even as Annie fought these diseases, convinced there was a genetic link within her family,  Dr. Mary-Claire King and her research team were working feverishly to connect the dots within families like Annie's, where breast cancer is present in more than one generation. Of course, in the end, they did just that and, with their discovery of the BRCA1 gene, made one of the most significant cancer breakthroughs of our time.

For many of us in the audience tonight, Annie Parker's story is our story.  It's my story and, although you didn't ever know it, it's your story, too. I'm indebted to Annie Parker for allowing it to be told and to Steve Bernstein, the producer, for telling it so well.  I am hopeful, too, that if enough people see Annie's story and the Basser Center is successful in its work, fewer families ever will have to endure an April 2 like the one we endured just a few short years ago.

Miss you....xoxo,
~ Boo!

A Very Public Conversation

As regular readers of this blog know, I’ve been in pursuit of a master’s degree in public administration (MPA) one course at a time for nearly six years.  In less than a week, I’ll start a summer course -- the penultimate one of my studies and in the fall I’ll take the final course, in which I’ll research and write my thesis on public policy issues related to the use and possible misuse of genetic information.

I’ve actually been researching this topic for quite some time--or at least collecting articles to read, thanks to a Google alert I set up for “Myriad Genetics,” which is the company that holds the patents--and does all the genetic testing--on the two BRCA genes that scientists have discovered thus far: BRCA1 and BRCA2.  (As regular readers of this blog also know, I’m a carrier of a BRCA2 genetic mutation that significantly increases my lifetime risk of both breast and ovarian cancer, and in the last 18 months I’ve had all the prophylactic surgeries, including micro-surgical breast reconstruction using my own abdominal tissue.)

Several years ago, the ACLU and a long list of other plaintiffs sued Myriad Genetics claiming that, among other things, genetic material is a “product of nature” and therefore cannot be patented. Myriad’s refusal to license its patents not only stifles important scientific research on these genes, but also makes the cost of testing for BRCA mutations exceedingly expensive and, in some cases, cost prohibitive, particularly for individuals without health insurance and those whose insurance won’t cover the test. The case currently is making its way through the court system and very possibly will end up being decided by the Supreme Court.

Perhaps my best research to date, though, has come from my latest read: written by Rebecca Skloot. Painstakingly researched over the span of a decade, the book tells the story of Henrietta Lacks, a poor, uneducated African-American woman in Baltimore who, in 1951 at the age of 31 succumbed to an extremely virulent form of cervical cancer. Unbeknownst to Henrietta or her family (including her husband, five young children and a slew of extended relatives), a sample of her cancer cells was successfully grown in a laboratory by Johns Hopkins scientists, a feat that had never been accomplished before. Because of the “immortal” characteristic of HeLa (an abbreviation of Henrietta Lacks) cells, they grew unlike others and have been used in the decades since in an astonishingly wide array  of scientific and pharmaceutical experiments.  Some of this research has led to the development of vaccines and medications, as well as to an enhanced understanding of cancer and other diseases--all unbeknownst to the Lacks family.
 
Although Henrietta lived and died before we as a society ever grappled seriously with the exceedingly tough public policy questions surrounding informed consent, genetic information disclosure or the resulting use and possible misuse of the data, these topics most certainly deserve our attention in today's world. Indeed, as Skloot writes in the book’s afterword, “Ellen Wright Clayton, a physician and lawyer who is director of the Center for Biomedical Ethics and Society at Vanderbilt University, says there needs to be a ‘very public conversation’ about all of this.”

This fall I look forward to researching and writing extensively about these issues and, if I’m lucky, to promoting and participating in the very public conversation they deserve.