So Much to Write, So Little Time

I have been percolating a post since Friday, January 23, but haven't yet had enough uninterrupted time to sit down and actually write it.  Hopefully in the next day or two...

In the meantime, I did have enough time to be a guest blogger, writing this post, which appears over on the blog of FORCE: Facing Our Risk of Cancer Empowered.

Looking forward to being together with my sisters in Philadelphia in June.  Who's with me?

#BlogElul: To Know or Not to Know

When I lived in Los Angeles more than a decade ago, the father of one of my colleagues had breast cancer.  In light of the diagnosis, his doctors suggested that my colleague have genetic counseling and possible testing for a BRCA gene mutation.

"No, I don't want to know," she told them.  "Whatever will be will be."

By contrast, more than two years ago, on the day after this blog post about BRCA awareness went live, a different former colleague wrote to say, "I just wanted to tell you that I found your blog so inspirational."

A few weeks ago, she wrote again:  "Hey Jane.  I wanted to tell you that

my father and I met with a genetic counselor to assess my risk of getting breast cancer  My dad was tested for the BRCA gene and it ended up being negative.  Thanks so much for talking about your experiences in a public manner.  It really inspired me to check out my own health."

I responded with this:  "Plonit -- thanks so much for your message!  I'm thrilled that your dad's test was negative and that my experience prompted you to get tested.  That's exactly why I do it!  Thank you!!"

Needless to say, I'm pleased to know that my efforts to raise awareness about BRCA mutations, especially within the Ashkenazi Jewish population are meeting with some success.  I'm glad to know, too, that my friend's father tested negative for a mutation and that she and her siblings are not at any greater risk for cancer (breast, ovarian, prostate, pancreatic and melanoma) than people in the general population.

As for my friend in Los Angeles, I hope she knows that even though she's opted not to test for a known BRCA gene mutation, she (and her daughter, beginning at age 25) should be doing surveillance as though they had, in fact, tested positive.  The regimen includes a mammogram once a year and an MRI six months later, meaning that they'd be getting each mode of testing no more than once a year (so insurance will cover the costs), but also getting two chances in one calendar year to be checked, increasing the likelihood of finding disease, if any, in its earliest, most curable stage.

Whether or not individuals want to know their BRCA mutation status, it's critically important that they know and understand the risks associated with these mutations and that they use that knowledge to make decisions about testing that are right for them and their families.

For more information about hereditary breast and ovarian cancer (HBOC) syndrome or to locate a certified genetic counselor who can help your family assess its risk, check out the website of FORCE: Facing Our Risk of Cancer Empowered.

In the year ahead, may we all have access to the knowledge and resources necessary to make the best possible decisions for ourselves, our families, and our loved ones.  Amen.


Inspired by Ima on (and off) the Bima, this #BlogElul post is one in a series marking the days of the Hebrew month of Elul, which precedes the Jewish High Holidays and traditionally serves as a time of reflection and spiritual preparation for the new year. 

Funding for FORCE: Facing Our Risk of Cancer Empowered

Dear Friends,

Although asking friends and family to donate to a specific cause is not among my favorite things to do, I'm willing to do it once a year on behalf of FORCE: Facing Our Risk of Cancer Empowered, whose 2014 fundraising campaign is underway.  I wholeheartedly believe that I would not be where I am in my BRCA journey today were it not for this incredible organization that is devoted solely to providing up-to-date information, resources, and support to the individuals and families that are at risk of hereditary breast and ovarian cancer (HBOC) syndrome.

As readers of this blog know, I have been exceedingly open and forthcoming about my BRCA mutation and the steps I've taken in the last several years to reduce my personal risk.  I'm not going to retell my story here, but if you want to read about it, there are plenty of details elsewhere on this blog. (Just put one or more of these keywords in the search field in the upper left hand corner on this page and you should get lots of posts from the past:  HBOC, breast cancer, BRCA2 mutation, BRCA BRCA awareness, breast cancer awareness, FORCE, gene mutation, mastectomy, prophylactic mastectomy, and/or breast cancer awareness month.)

I will say, however, that I am proud and honored to give back to FORCE as one of two volunteer outreach coordinators in New York City. In this role, I work with my partner coordinator to schedule, organize and help facilitate peer-to-peer support meetings on topics of interest to the hereditary cancer commuity; provide one-on-one support to members dealing with emotional and physical impacts of their BRCA status; and manage regular communications to members of FORCE's NYC group.  I also speak and write frequently about BRCA gene mutations in an effort to raise awareness about their presence, particularly in the Ashkenazi Jewish community, where one in 40 individuals (both women and men) is a carrier, and most of these people are unaware of their status.

Indeed, until four years ago, when my sister (thankfully, she's negative) and I took the initiative to get tested after we lost our mom to exceedingly virulent breast cancer, we, too, were unaware of the presence of a BRCA mutation in our family.  Although we'll never know how different our family's story might have been had we known about the mutation sooner, if my work with FORCE can prevent even one other family from enduring what we did because we didn't know, I believe some good will come from our experience and that my endeavors will contribute to the Jewish concept of tikkun olam -- repair of our world.

Because FORCE has been been -- and continues to be -- a tremendous blessing to me and to so many others, I would be exceedingly grateful for your support during this year's fundraising campaign.  (Donating through my FirstGiving page is simple, fast, and fully secure.)

Thank you, as always, for your support of me and of FORCE, the organization that means so much to me.

xoxo,

~ Jane.

Where in the World is JanetheWriter?

This week, I did a bit of "blog-trotting."

On Tuesday, I was over at "Focus on Cancer," the blog of the Abramson Cancer Center at Penn Medicine as part of Hereditary Breast and Ovarian Cancer (HBOC) Week.

Today, my Ten Minutes of Torah essay about Torah study was on the blog at ReformJudaism.org, the URJ's site that's all about Jewish Life in Your Life.

Stay tuned...you never know where I might turn up next!

Guess What? We're One of Those Families

Dear The Mums,

I can't believe that I haven't written to you since June, when Ian graduated from P.S. 41.  He's already been at Lab Middle School for nearly a month and even though it's going to be close to 80 degrees tomorrow in New York City, today is October 1.  Breast cancer awareness month is upon us, the world suddenly is awash in pink, and with the color adorning everything from yogurt lids to coffee cups, tee-shirts, and football helmets comes an emotional roller coaster of memory, and yes, many "what ifs," a few of which nagged at me last night.

Barbara Walters moderated a BRCA awareness symposium at Central Synagogue that was geared specifically for the Jewish community, where the incidence of BRCA gene mutations is 10 times greater than in the general population.  (Too much in-breeding in the shtetl, I always say.)  The event was the outgrowth of a High Holiday awareness campaign during which posters with BRCA information were sent to every Reform and Conservative congregation in the country in the hopes that they'd be displayed in lobbies and restrooms where they could be seen and read by worshipers throughout the High Holiday season.

Last night's panel featured four physician-researchers from top-notch institutions, each of whom has devoted his or her studies and clinical practice to breast and/or ovarian cancer and thus is an expert in the ins and outs of hereditary breast and ovarian cancer syndrome, which often results because of a BRCA mutation within a family:

• Carmel Cohen, M.D., Professor of Obstetrics, Gynecology and Reproductive Science, Mt. Sinai School of Medicine
• Susan Domchek, M.D., Basser Professor in Oncology, Abramson Cancer Center, University of Pennsylvania and Executive Director, Basser Research Center
• Noah Kauff, M.D., Director, Ovarian Cancer Screening and Prevention, Gynecology Service, Department of Surgery, Memorial-Sloan Kettering Cancer Center
• Julia Smith, M.D., Ph.D., Director, NYU Cancer Institute's Breast Cancer Screening and Prevention Program and and Director of the Lynne Cohen breast cancer preventive care program at NYU Langone Medical Center

Guess what, The Mums?  We're one of those families.  But, because Aunt Claire was diagnosed with breast cancer at about the same time that Mary-Claire King was discovering the BRCA1 gene and the havoc it can wreak in families where a mutation in the gene is passed from one generation to the next, it was too soon for her to be tested.  By the time a mammogram uncovered your triple negative breast cancer in 2008, you certainly should have been tested for the BRCA2 mutation we now know you carried.  Why your oncologist didn't suggest it, we'll never know...

In any event, there was a terrific turnout, and it looked as though most of the sanctuary was filled.  A classical rendition of Hinei Ma Tov opened the program, sung by a woman with a lovely voice, accompanied by violin and piano.  Peter Rubinstein, who's going to retire at the end of this year, I think, followed with a few remarks.  Two congregants from Central, Mindy Gray, who with her husband provided funding to establish the Basser Center in memory of her sister, Faith Basser, who died of ovarian cancer at 44, and Stacey Sager, a WABC-NY reporter who had both breast and ovarian cancer and isn't yet 50, also spoke briefly after which the panel discussion began.  Barbara Walters was a wonderful moderator, and there was even time at the end for two or three questions from the audience -- which we submitted on index cards.

From my perspective, the evening's most important take-aways were these:

• If you're Jewish and have relatives with breast and/or ovarian cancer, talk to your doctor about genetic counseling and testing.
• Don't be afraid to pursue genetic counseling and testing.  In most cases, insurance will cover the cost for individuals of Ashkenazi Jewish descent.  Knowledge is power and this power, as I know from my own experience with HBOC syndrome, saves lives.
• If you experience any of these symptoms for a period of a week or more, go see your doctor and ask him or her to prove that you don't have ovarian cancer: bloating, abdominal pain, a full feeling after eating, or urinary symptoms that include increased urgency or frequency.
• If you find yourself in need of medical professionals who are experts in the world of hereditary cancer syndrome, they're most often located at large medical facilities in urban settings. Go after them.

I do have one criticism of the event and it is this:  Although we heard from two women whose lives have been touched (albeit in different ways) by hereditary breast and ovarian cancer, this was an awareness event and there was no previvor voice among the speakers.  Such a voice, I believe, would have illustrated the perspective of someone who was able to use the knowledge gained through genetic counseling and testing to change intentionally the course of her own life or those of others in her family.  Just think about the possibilities had you or Amy or I attended an event like this six or eight or 10 years ago.  Who knows how having knowledge about BRCA mutations back then might have changed our family's experience...

So that's the latest from here, The Mums. It's late and I'm tired so I'm going to close for now, but I won't wait so long to write again.

Miss you...xoxo,
~ Boo!

P.S.  As a volunteer outreach coordinator for FORCE, which was one of  several participating organizations last night, I did a good bit of work to publicize the symposium, mostly on social media.  In doing so, I had a lot of email correspondence with Becca Mueller, a genetic counselor from the Basser Center, and it was great to meet her in person last night.  What's more, she put me in touch with the blogger for the Abramson Cancer Center blog, and I was able to write this post for them, which went live today.

Facing Our Risk of Cancer Empowered: A FORCE for Good

Earlier this evening, I posted this status update on Facebook:

Happy erev mammoversary to me! Tomorrow is two years since the 12-hour surgery that saved my life...and I wasn't even sick! 

I have no doubt that the surgery—a prophylactic bilateral mastectomy (PBM) with micro-surgical reconstruction using my own abdominal tissue and blood supply—saved me from a diagnosis of breast cancer.  Knowing that I had a pre-surgical lifetime risk of developing the disease that hovered somewhere in the 80^th percentile, I wasn’t willing to sit around and wait for the odds to play themselves out.

Although there were many factors that propelled me down the road to surgery (an option that isn’t necessarily the right one for every BRCA-positive woman), I’m not sure I could have taken those first tentative steps without FORCE and the women I’ve met through the New YorkCity chapter of the national organization devoted solely to individuals and families affected by hereditary cancer syndrome, most often because of the presence of a BRCA mutation.   I attended my first FORCE meeting just weeks before the hysterectomy that preceded my mastectomy by about six months.  As wonderful as it was to get some terrific ideas about preparing for surgery, the best part of the gathering was being together for the first time with so many BRCA “sisters,” many of whom were dealing with the same difficult choices and hurdles I’d just had thrown in my own path.

Needless to say, I was hooked, and I’ve hardly missed a local FORCE meeting since.  I’ve also attended the last two annual conferences in Orlando and, most recently, joined another member as a volunteer Outreach Coordinator in New York City.  I believe that if sharing my experiences and the knowledge I’ve gained as a result of being BRCA positive can ease others’ travels, I am fulfilling a part of my obligation to partner with God in repairing our fractured world.

As I’ve noted on this blog before, because FORCE is a grassroots, not-for-profit organization on a shoestring budget, it faces a constant need for funding.  The New York City chapter is in the midst of a fundraising campaign that ends on July 31.  I’m grateful to those of you who have made generous donations to this cause that has become so very important to me and hopeful that others might consider a contribution to this incredible organization that’s been there for me and given me the tools and training to be there for others.  Your support on behalf of FORCE will help ensure that none of us in the hereditary breast and ovarian cancer community ever has to walk this bumpy path alone.

My Three Names

Last night, one of my BRCA sisters sent me this link to a TEDMED 2012 talk by Dr. Ivan Oransky, executive editor of Reuters Health.  In it, he criticizes this country’s broken healthcare system and doctors who diagnose such conditions as “pre-diabetes,” “pre-hypertension” and “pre-acne” because they are incentivized to order tests, perform procedures and prescribe drugs.  Not quite six minutes into the 10-minute video, Dr. Oransky describes “previvors” as what a “particular cancer advocacy group would like everyone who just has a risk factor, but hasn’t actually had that cancer to call themselves.”  He then suggests a “Previvor” reality television show in which participants who develop a particular disease are voted off the island.

His remarks demonstrate a deplorable lack of knowledge about cancer genetics, outrageous insensitivity to individuals and families affected by BRCA gene mutations, and a horribly distasteful and dismissive attitude toward those in the hereditary breast and ovarian cancer (HBOC) community.

Dr. Oransky’s comments bring to mind this Jewish teaching:

Every person has three names:
One her father and mother gave her,
one others call her,
and one she acquires herself.

Given the opportunity, here’s what I’d tell Dr. Oransky about my three names:

My father and mother named me Jane Ellen.  My name in Hebrew is Yehudit bat Reuven v'Dina.

Others call me many things:  Jane, Jane-O, Hane, JanetheWriter, daughter, sister, niece, colleague, friend.  

Among the numerous names I’ve acquired for myself, one is “previvor.”  Unlike “New Yorker,” “graduate student” or “writer,” though, it’s one I didn’t want, one I wouldn’t wish on my worst enemy, and one that has caused me deep physical and emotional scars.  At the same time, I’m lucky to have discovered my status as a “previvor,” grateful for the science and technology that make “previving” possible, and satisfied with the tough choices I’ve made to remain a “previvor.” 

Most of all, though, I’m incredibly proud to belong to a community of caring, giving, supportive women and men who—regardless of what, if anything, we individually or collectively choose to call ourselves—bring to bear outstanding knowledge and information, strong self-advocacy, cutting-edge research, and thoughtful, calculated decisions about medical and surgical interventions, all of which we use to save our own lives.