The tipping point

I am a fan of Malcom Gladwell's book The Tipping Point: How Little Things Can Make a Big Difference.  Several years ago I saw him speak at UCLA and both the book and the talk made me realize the small thinks in my life that have formed tipping points for future bigger events.  

One of those things was a walk with my friend Susan in 2005.  Susan was diagnosed with breast cancer in 2003 and the young age of 38.  We met when our oldest sons entered kindergarten together many years ago and have been friends since.  Our homes are a few blocks apart and we often walk to the beach in the mornings after taking the kids to school.  Back in 2005, we also often walked together to pick the kids up from elementary school.  On one stereotypically beautiful sunny warm Southern California day we met up on our way to pick up the kids from school.  I had just come from an appointment with my gynecologist where he had again encouraged me to consider testing for the BRCA genes.  I was deeply troubled by the potential consequences of testing in terms of handling the knowledge and the possibility that preventive surgery might be necessary so I turned to my friend for her advice.

Susan and I share many things in common: we both have two sons, similar in age and our older boys have been in the same class many years; and both of our mothers were diagnosed with breast cancer in their early 40s.  Unlike my mom, however, who is a long term survivor, Susan's mom did not survive her encounter with the disease.  When Susan was diagnosed with cancer her children were roughly three and six and her diagnosis plunged her into fear of leaving her children motherless.  She nonetheless bravely battled through surgery, chemo, and radiation and two years later was again the picture of health.

I told her about my conversation with my doctor as we walked to school and about his recommendation that I test for the BRCA genes.  I told her about my conflicting emotions about testing and asked what she would do were she me.  Her response was unequivocal.  She said she absolutely would have done genetic testing before her breast cancer diagnosis if it had been presented to her as an option.  She would have given anything to have been able to do something to prevent her disease or at least to have some forewarning of it.

"Do it." she said.

My memory of this conversation is more clear than is Susan's, perhaps because the conversation was a tipping point in my thinking I think BRCA testing.  I didn't test immediately but this conversation tipped me from "How can I do this?" to "I CAN do this!" I have handled the truth and become empowered by it and now I advocate on behalf of other women similarly situated.

I am strong:

• I have removed my breasts to reduce my breast cancer risk; 
• I have reconstructed by breasts to look and feel whole again; 
• I have removed my ovaries and fallopian tubes to reduce my ovarian cancer risk; 
• I am managing surgical menopause with humor if not always grace; 
• I have become an outreach coordinator for FORCE, Facing Our Risk of Cancer Empowered; 
• I have talked to hundreds of women in person and on the phone in an effort comfort, educate, and empower them and I have been told by some of them that I have been the tipping point in their lives;
• I have become an author: I teamed up with Dr. Ora Gordon to write Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer because there was no book out there for women like me.

I would have done none of this had it not been for Susan.

Thank goodness for friends.

"Life is partly what we make it, 

and partly what it is made by the friends whom we choose." 

 ~ Tehyi Hsie

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Women CAN Handle the Truth–About Cancer OR Alzheimer’s

Joi is again featured on the Ms. Magazine Blog:

The BRCA genes were discovered in 1994 and 1995, but when you visited your doctor anytime from 1995 through the early 2000s, chances are that she or he did not recommend that you test for a mutation on the genes that would indicate an increased chance of developing ovarian or breast cancers. Why not? Because the paternalistic feeling of much of the medical community was that women who might be carriers of mutations couldn’t handle knowing their risk.

In fact, in 1998, an esteemed panel of experts convened a conference at Stanford University to decide what to do with the newfound ability to test for these genes. Their conclusion? Genetic testing for BRCA1 and BRCA2:

… is not appropriate for widespread clinical use or population screening, but may be beneficial in some circumstances–for example, in families experiencing multiple cases of cancer. Testing would raise fewer problems if definitive preventive interventions were available for those with the mutations, and if society better protected people with genetic risk of cancer.

Some doctors went so far as to test women for BRCA mutations but then refused to tell them the results because they thought the knowledge would be harmful. Other experts at that time concluded: “There are no known methods for preventing breast or ovarian cancer that would be particularly important to women with versions of these genes.” Essentially, doctors were throwing up their hands and saying they didn’t have any good options, so foreknowledge could be a dangerous thing.

Fortunately, times have changed. Medical experts now agree that genetic testing for BRCA genetic mutations can save lives, and that interventions are available. And the feared psychological harms have not materialized. Numerous studies of at-risk women have been conducted over the past decade and the consensus is: Women can handle the truth! Studies of individuals receiving such genetic information suggest that those who do not carry “at-risk” genotypes derive psychological benefits, while those identified as at risk show no adverse effects, according to a 2009 study in the British Journal of Psychiatry.

Does this mean there are no psychological impacts from genetic testing and discovering you are at genetically high risk for cancer? No. Learning you are at high risk for cancer causes stress, no doubt. The women profiled in the book Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer candidly discuss the emotional toll of knowing about a BRCA mutation. But they also show how this knowledge can be empowering by allowing them to escape the cancers that have stricken other members of their family. Read more


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Los Angeles In the Family screening

Please join us for a very special screening of

In The Family

with filmmaker Joanna Rudnick, who is expecting her first child

Presented by

FORCE: Facing Our Risk of Cancer Empowered

DATE: March 27, 2011

TIME: 3:30 p.m. to 6:30 p.m.

LOCATION: Disney Studios

Burbank, CA

$10 suggested donation

RSVP to Linee or Joi for a map and directions

The screening will be followed by a panel discussion including:

Joanna Rudnick, In the Family filmmaker

Ora Karp Gordon, M.D., M.S.

Director, GenRISK Adult Genetics Program

Medical Genetics Institute

Cedars-Sinai Medical Center

Director, Cancer Genetics

Disney Family Foundation Cancer Center

Providence St. Joseph Hospital

Associate Professor of Medicine

Geffen School of Medicine at UCLA

and

Anya Prince, J.D., attorney with the Cancer Legal Resource Center

specializing in genetic discrimination issues

In the Family is a documentary film about predicting breast and ovarian cancer, the consequences of knowing, and the women who live with the risk. Beginning with her story of testing positive for the familial breast cancer mutation (BRCA), Filmmaker Joanna Rudnick chronicles the lives of several women currently undergoing the process of genetic testing -- following them from their decision to seek testing, through the testing process, and in the aftermath when they are coming to terms with the information they receive. These stories of the first generation of women to live with the knowledge that they are predisposed to a life-threatening disease will teach us what it means to survive a diagnosis of high risk without being consumed or defined by it. They will help us to understand the psychological, legal, ethical, cultural and social complexities of genetic testing for a mutation, which affects the entire family, for which there is no cure, and wherein the only treatments currently available involve enormous quality-of-life sacrifices.

Info about breast cancer in men

Men with BRCA mutations, especially men with BRCA2 mutations are at significantly increased risk for breast cancer when compared with other men.  Because only one percent of all breast cancers occur in men, it is often thought of as a woman's disease, perhaps even more so because the breast cancer logo is pink.

But men do get breast cancer and the disease can be particularly devastating for men because it is often diagnosed at a later stage.  Early diagnosis requires men to be aware of changes on their chests and can lead to successful treatment for breast cancer.  A number of organizations are seeking to raise awareness of the potential for men to develop breast cancer and to provide information to me about this disease, including His Breast Cancer Awareness.

Another great organization with support and information specifically for men is the John W. Nick Foundation which sponsors the MaleBreastCancer.org website.  As their logo says "men get breast cancer too!"  If your family has a known BRCA mutation, the men you love should be directed to these sites and should speak with a certified genetic counselor or medical geneticist about their risk.

Why go to the FORCE Annual conference?

The Joining FORCEs conference is an annual forum on hereditary breast and ovarian cancer. We welcome anyone concerned about hereditary cancer: cancer survivors, high-risk individuals, those with a BRCA mutation or family history of cancer, and health care providers who treat high-risk patients.

This year the Joining FORCEs 2011 conference will be held June 23-25, 2011 in Orlando, FL at the Hyatt Regency Grand Cypress. Please consider going. It will be the best and most informative three days you could possibly spend.