Thursday, March 31, 2011

Dr. Gordon tackles tough questions

This past Sunday was the LA screening of Joanna Rudnick's film In the Family at the Disney Studios in Burbank.  The screening was followed by a panel discussion with Joanna, Dr. Ora Gordon and Anya Prince, JD, a genetic discrimination expert with the Cancer Legal Resource Center.

This screening was attended by nearly 100 people, most of whom had not seen the movie before.  The film -- a moving documentary about a BRCA-positive woman who struggles with managing her risk while encountering a variety of women (and men) struggling with risk or cancer -- generated lots of questions for our very able panel.  The toughest questions went to Dr. Gordon, who handled them with her usual expertise, grace and occasional humor.  I have seen Dr. Gordon speak and field questions in the past and am continually awed by the breadth of her knowledge and her compassion in dealing with individuals facing difficult choices.

I want to share with you a few of the questions that came out of Sunday's post-screening discussion:

  • How does preimplantation genetic diagnosis -- genetic testing of an in vitro embryo -- affect the embryo or the child?
  • What is the average age of ovarian cancer diagnosis for BRCA1 carriers?
  • Is having annual mammograms since age 35 sufficient for surveillance if you have not been tested for a BRCA mutation?
  • Is there a way to find out if someone who died 25 years ago was a BRCA mutation carrier?
  • How can I get my older brother to test?
  • What percentage of ovarian cancer cases are the result of BRCA mutations?
  • Aside from surveillance such as MRIs, mammograms and CA-125, what can someone do to try to prevent cancer aside from surgery?
  • When do you recommend BART testing?
  • If my family has a BRCA2 mutation but I test negative, what's my cancer risk?
  • Do the chance of developing cancer increase or decrease with age both for BRCA-positive women and non-BRCA women?
  • Does pregnancy increase or decrease the risk of breast or ovarian cancer?
These questions are similar to the questions Dr. Gordon is asked virtually every time she speaks to a group and are among the questions she answers every day for her patients. These questions, and many others like them are part of the reason why we wrote Positive Results.  Positive Results answers all of these questions, and many, many more.  At one point in the evening Dr. Gordon said in response to a question "Read our book!"  And while that elicited laughter because of her tone, it is true.  Positive Results was written to be a comprehensive resource, it has an excellent index to make accessing the information in its pages easy and convenient.  Use it and not only will it will answer many of your questions, you will be much better prepared when you meet with your doctor.

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Tuesday, March 29, 2011


We love the poem "How" from Martha Haley, which she read in the film In the Family (this is an abbreviation):

How can I fight you, when you insist on sneaking up on me?
How can I hide from you, for everywhere I go you try to find me?
How can I see myself as a "woman" when you insist upon disfiguring me?
How can I look at my daughter, sister and friend and wonder are you going to hurt them also.
How can I walk straight, when you try to ripple through my bones?

I can because even though you sneak up on me, I know your there, that's why the fight isn't over.
And I can still see myself as a woman, "Because" it's not what you have done that defines my "Womanhood."
I am a "Woman" by God's Creation only and no one can take that away.
...because there's one thing you can't take from me and that's the ability to be a "Survivor."

The full poem and a photo of Martha can be found here.  More information about Martha's work to support and educate the black community about the risks for breast cancer can be found here.

Thursday, March 24, 2011

Dr. Oz agrees

In one of my first blogs I mused over the radiation exposure from new airport screening devices, specifically backscatter scanners, which use x-rays to "see" under our clothing to determine if we are carrying anything dangerous.  My blog was written before the broad roll out of this technology, which resulted in waves of objections based on privacy concerns as well as concerns over the radiation exposure caused by the scans.  Privacy rights groups have sued to stop what they call excessive invasion of privacy caused by these scans.  Congress has begun hearings to address the issues of both privacy and health risks from radiation exposure.  From a technological standpoint, the privacy issue is the easier one to address.  Experts believe that software can be developed so that what the monitors show is not the individual's actual body but an avatar of a generic body with any problem points identified for further search.  Even once this is done the radiation exposure will still be an issue for many of us, especially as unlike medical devices that use radiation, the FDA does not monitor or test these devises for safety.

In the wake of the Japanese nuclear disaster the amount of radiation involved in airport scanners seems miniscule.  And it is.  But that does not mean that it is totally harmless.  A variety of medical experts have questioned the safety of these devices, although it is safe to say the experts on not in agreement on this one.  Dr. Oz has chimed in with a position in line with the one I expressed in my previous blog.  Namely, Dr. Oz thinks:
[T]he health risk posed by these scanners is very minor, although populations that are more sensitive to radiation may want to opt for the pat-down instead. These include travelers over 65 (the body's cells are less able to repair DNA damage as you age), women with BRCA-1 or BRCA-2 gene mutations, cancer patients, pregnant women, and children. (emphasis added)
Radiation expert Dr. David Brenner of Columbia University made what I think is the most clear case for the risk:
"A good analogy ... is that it's like a lottery. You buy a ticket, and the chances of winning are minuscule -- but that doesn't mean no one will win the lottery."

"So we won't know who it is who gets these radiation-induced cancers, but it's going to be someone."
The risk that these scanners may cause cancer may be so low as to be unimportant to some people, like those making the decisions to use them. But if you are the one who gets cancer, the perspective is entirely different.

I don't want it to be me.

Monday, March 21, 2011

Radiation anyone?

Beachgoers near San Diego with the San Onofre
power plant in the background
News coverage of the potential risks of radiation exposure is omnipresent these days thanks mostly to the ongoing nuclear disaster in Japan.  For those of us who are not nuclear or radiation experts (and yes, that includes me), sorting through the news reports to determine what is hype versus what is real risk for us and our families is far more difficult.  I admit that I know just enough about the dangers of radiation exposure to be frightened by most any news report. Perhaps that comes from growing up in the shadow of the cold war.  Today disaster preparedness at my children's schools involves preparing for an earthquake.  When I was a child we prepared for a different disaster, potential nuclear war, by knowing the  route to the nearest fallout shelter.  After witnessing the Japanese earthquake that has turned into a nuclear disaster perhaps we should prepare for both.  Especially if, like me, we live on or near an earthquake fault line and also near a nuclear reactor.

Interestingly, the Federal Emergency Management Agency's website has zero information on preparing for a nuclear meltdown disaster such as Japan is currently experiencing even though there are more than 100 operating commercial nuclear power reactors in the United States.  Political pressure is on  now though to get the government to examine the safety of our nuclear power supply in the event of a natural disaster such as Japan's earthquake and tsunami, nowhere more so than in California, with its multiple earthquake fault lines and two operating nuclear power plants.  As reported in today's Los Angeles Times:

Wednesday, March 16, 2011

An open letter to my breasts

The following is a guest blog from my friend Jackie:

Five years ago, I hated you. I couldn’t wait to get rid of you and never, ever look back. You had betrayed me. You betrayed my whole family.

I stood there, exposing you for who you were, as the doctor ran a marker over you and explained where he’d cut right into you, taking you off my body. The lump you created would be sent to pathology and the remaining tissue, instead of destroying it (and how I wanted you destroyed), would be donated to research, and maybe even help someone else on the same path one day, betrayed by her own breasts.

I remember glancing at you with disgust that day, you looked so pathetic. You too-closely resembled tube socks filled with sand after breastfeeding two babies. I couldn’t help but think back to the days before kids when I really loved you and actually considered you one of my better physical assets. Now, not only were you ugly, you were trying to tear me down.

I’m so sorry. Because of my anger and fear, I never even said goodbye. I was so caught up in the chaos of the situation -- one minute, I was having blood drawn to see if I carried the same genetic mutation my mom had... the next, I was having an MRI just to be safe. It was only two weeks later, five years ago on this very date, I was being wheeled into surgery to have you replaced with a less realistic replica. With two kids and a husband to fight for, I never even had the chance to stop and mourn your loss.

And a great loss, you were. Because it was you who nourished my boys, working to provide them with what they needed every three hours, even while the rest of me dosed off. It was you who taught me some tough lessons about men, that even though some may have been interested in you, it didn’t mean they were truly interested in me. I can hardly remember a time before you, you were like the one constant that grew up with me -- literally -- and even got bigger when I’d gain weight, smaller when I’d lose it again. You were fun to dress up and take on the town -- you even got me to the front of the line once or twice.

But you’re gone now.

I don’t mean to hurt your feelings but I really don’t think of you the other 364 days of the year. Because not only did losing you also rid me of the fear that I would lose the breast cancer battle in my 30‘s, like my mom did, I was also given a new appreciation for life -- and myself. It’s true, I sometimes look at my body, what I call the human pin cushion, with frustration and disappointment (I am a girl, you know), but sacrificing you has given me more than it could ever take away. I’m empowered to make tough decisions, confident that I’m strong enough to handle almost anything and actually feel more womanly than ever before -- something I think all women should have in their lives.

But after five years apart, I will admit that your replacement still doesn’t (and probably never will) feel as close to me as you did. But they’re perky, allow me to explore new clothing styles and have promised me that I’ll never, ever require duct tape to keep them from flopping around while working out.

If I never write you again, please understand. It’s not that I don’t love and appreciate all you’ve done for me, but it’s time to move on to a new chapter of my story, one that involves love, laughter, health and happiness -- something I could never have achieved without my experience with you.

From the bottom of my heart, I thank you for that.
From The Silver Whining.  To see more of Jackie's story click here.

Friday, March 11, 2011

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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Monday, March 7, 2011

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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Friday, March 4, 2011

Los Angeles In the Family screening

Please join us for a very special screening of

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


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.

Thursday, March 3, 2011

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 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.

Wednesday, March 2, 2011

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.