Her BRCA+ Story: Joyce Wadler

Joyce Wadler’s books, “My Breast” and “Cured,” detail her experiences with breast and then ovarian cancer.

photo

With her initial cancer, at age 43, she didn’t know she carried a BRCA mutation.  At that time, in 1991, BRCA1 and BRCA2 genes had not yet even been identified.   By the time she was diagnosed with ovarian cancer 4 years later and went through surgery and chemotherapy, the discoveries had been made and she was tested.  And sure enough, she was positive for a BRCA1 mutation.

These books are well worth reading, whether or not you are personally affected by hereditary breast and ovarian cancer.  Ms. Wadler is a talented writer, having been on staff at the Wall Street Journal for many years, and tells her story with wit and even humor (referring to herself as the Middle-Aged Mutant Jewish Writer, for example.)

Those of us with BRCA mutations each have our own individual story of how our life has been affected by this genetic error, played out in illness or by the knowledge that we harbor it.  Each story is specific and different, but certain echoes of commonality remain.  Ms. Wadler’s story is her own and very different from mine, but I found several parallels and connections.

She got breast and then ovarian cancer, as did my mother.  Ms. Wadler was 47 when she got ovarian cancer and thereafter discovered that she carried a BRCA1 mutation.  I was 47 when my mom got ovarian cancer and we subsequently learned that she and I both have a BRCA2 mutation.  Ms. Wadler has one of the three most common mutations found in persons of Ashkenazi Jewish background, also know as founder’s mutations.  We have a different mutation, but also one of those three.

Some aspects of these books are rooted in the particular time in which they occur.  As she writes in “Cured,” “Things always change in Cancer Land.”  Medical knowledge and practice have changed and progressed since these events occurred, so some of the details are no longer current.  The common practice of using the internet to research medical issues, for example, would have simplified much of her experience.  But these two volumes are not just of historic interest.  They are fresh and compelling and (despite the darkness) funny.

photo-1

Neither book is completely easy to read (though both are short) in that she details her treatment and her resulting physical and emotional traumas.  But the title of the second book, initially published as a serial in New York Magazine in 1997, gives well-deserved hope – you know she will likely be okay in the end.  And she still is.  I quickly googled her and she is still alive.  18 years after her ovarian cancer diagnosis and 22 after her breast cancer diagnosis.

Joyce Wadler’s BRCA+ story is her own.  I am glad she chose to share it with us in these two memoirs and highly recommend them.

Two and a Half Hours

I spent an hour and a half last week watching “Project Runway.”  As an unapologetic fan, that was a good use of my time.  Really, it was.  My husband and I also watched the most recent hour-long episode of “Grey’s Anatomy.”  Yes, I still love it.  And he likes it enough to stick with it (and me).

 

But for some reason, I was at first reticent about watching the following two videos on my computer, in part due to the fact that they together total about 2 ½ hours in running time.  Who has enough time for that?  Luckily, as it turns out, I do.  And these videos will undoubtedly stick with me much longer than will either of those guilty pleasure TV shows…

 

First, a symposium at New York’s Central Synagogue, ably moderated by Barbara Walters, about hereditary breast and ovarian cancer in the Jewish community  (http://www.youtube.com/watch?v=eQIr6B3UcjA&feature=youtu.be&desktop_uri=%2Fwatch%3Fv%3DeQIr6B3UcjA%26feature%3Dyoutu.be&app=desktop).  It is longer, at 2 hours.  But it went by quickly.  And the messages are valuable for everyone, not just persons with Jewish heritage.

 

Secondly, a Breast Cancer Awareness Month (BCAM) interview with Gayle Sulik, Dr. Susan Love and Lisa Bonchek Adams on “The Stream” on Al Jazeera America, focused primarily on pink marketing, or the marketing of merchandise with a percentage somehow “going to fight breast cancer.” https://thinkorbit.app.box.com/thestream101113

 

Watching these videos, two women made a big impression on me.  Barbara Walters gracefully moderated the “Knowing Saves Lives” panel with her calm, informed, interested presence.  And she has a personal stake in the matter.  Her sister had breast cancer and ovarian cancer, dying from the latter over 20 years ago, and she herself had her ovaries removed to decrease her risk of ovarian cancer. (She didn’t say whether or not she has had BRCA testing.)

 

But the most powerfully resonant moments of all 180 were spent listening to Lisa Bonchek Adams on The Stream interview.  About 6 years ago, she was a young mother of 3 recently diagnosed with breast cancer.   Last year she learned it has metastasized to her bones and lymph nodes.  She has stage IV cancer.  But she has continued writing and speaking.  I felt lucky to hear her.  In this setting, she spoke for the 30% of patients whose breast cancer metastasizes.  Her stake couldn’t be higher.

 

What can people do to be supportive and “aware”?  Lisa suggested ways other than giving money.  She suggested being up to date on your vaccination and flu shots.  Helping the immunocompromised by not being around them when sick.  Donating blood and platelets, always needed by people in cancer treatment and not just those who have suffered trauma.  Following blogs and staying informed.

 

Breast Cancer Awareness Month at its best.

 

And 2 ½ hours well spent.

 IMG_3620

 

Here’s a few take-home messages, from my viewing.  There’s a lot more there – 2 ½ hours between the two, after all, but this may whet your appetite to watch either or both yourself.  And if you don’t have the requisite 180 minutes, you’ll at least get a taste.

 

Central Synagogue Symposium with Barbara Walters — “Knowing Saves Lives”

  • More women lose their lives to ovarian cancer than to any other gynecological cancer.
  • The rate of BRCA mutations is the general population is 1/400 – 1/600.  In people of Ashkenazi Jewish heritage, the rate is 1/40.
  • Anybody with ovarian cancer is now considered a good candidate for BRCA genetic testing.
  • 1/3 of ovarian cancer patients of Jewish heritage carry a BRCA mutation.
  • BRCA+ women who take oral contraceptives may reduce their risk of ovarian cancer.
  • Only 25-30% of BRCA+ women in the US who have never had cancer (often called “previvors”) have a prophylactic bilateral mastectomy (PBM) to reduce their breast cancer risk.  This rate is higher than in the rest of the world.
  • The alternative to PBM for previvors is enhanced screening, with annual mammograms and breast MRI’s, often on an every 6 month schedule.
  • The choice between enhanced screening or PBM by a particular woman depends on individual factors, including risk tolerance.
  • Previvors who have completed their families and reach about age 40 should consider surgery to remove their ovaries and fallopian tubes, which will reduce their risk for both ovarian and breast cancer.

 

The Stream Interview – with Gayle Sulik (author of “Pink Ribbon Blues” and founder of the Breast Cancer Consortium), Dr. Susan Love, and Lisa Bonchek Adams (blogger at http://lisabadams.com/ who is living with metastatic breast cancer)

  • Pink marketing is often really just visibility of the breast cancer/ pink brand without any real consciousness-raising.
  • The often-celebratory mood of Breast Cancer Awareness Month (BCAM) emphasizes survival and “winning the battle” with breast cancer.  Reality is more complex.
  • Lisa – awareness should be education, not just pink commercialism.  Many don’t know the facts.  Even if breast cancer is found early, it can metastasize.  A patient can do everything “right” and still have their cancer metastasize.  30% of breast cancers become metastatic.  This reality is lost in the pink, in the focus on positive outcomes and survival and moving forward.
  • Dr. Love – there are collateral damages from breast cancer treatment.  Chemo brain, numb toes, pain from surgery, lymphedema.  Even if the patient is cured, there is a huge price.
  • Gayle – companies often jump onto the pink marketing bandwagon.  Some donate part of the profits from pink merchandise, but often the profit margin is much higher and they benefit more than the charities.
  • Questions to ask before buying a pink/ breast cancer related product – where is the $ going, what % is donated, and how will the money be used.
  • Lisa – instead of buying these pink products, you can take your money and give it directly to good organizations doing important research.
  • Gayle – breast cancer as culturally perceived proxy – by supporting the effort against breast cancer, it is seen as supporting women’s health.  But other important issues can be overshadowed.  Ovarian cancer, for example, is very significant for women’s death rates.  And both heart disease and lung disease kill more women than does breast cancer.  And we need to remember that  men can also get breast cancer..
  • Dr. Love – Currently, we have better treatments and people are living longer than in the past, both with breast cancer generally and with metastatic disease.  We’re learning about the biology of breast cancer.  Finding a cause would be the ultimate home run…