Friday, May 28, 2010

No scan, no thank you

My dad was an airline pilot for TWA for thirty years back in the heyday of air travel; back when air travel was classy and airport "security" virtually unheard of. I remember how excited I was when we would go anywhere by plane, especially if we went on a flight and my dad was the pilot. We had to "dress" for the occasion. I was required to wear a dress and my brother had to don a coat and tie. Jeans were rarely seen on planes. Many things about air travel now are vastly different, what we wear, airplane food (or lack thereof), our attitude toward air travel, and of course airport security.

I grew up in rural Missouri just outside of Kansas City, which built what was billed as the most convenient airport ever because every gate was mere steps from the curb. We got out of the car and walked across the corridor to our plane. These days, Kansas City's airport, with its walls of glass that now divide that formerly convenient corridor and passenger screening checkpoints set up every couple of gates, seems like an awkward relic of the former age of air travel.

Airport security today is a much more serious matter in light of the harsh reality of 9-11 and the Christmas day underwear bomber. I am willing to endure taking off my shoes, belt and watch; removing my laptop from its case; packing all my liquids and gels in a small plastic bag; and throwing away my bottle of water even though I am thirsty. I wait quietly in long lines and arrive at the airport hours before my flight departs.  I am a compliant traveler, partly because that is my personality and partly because I recognize that the stakes are high and lives are at stake if security is lax.

But I am troubled by the next wave of airport security.

Last week NPR produced a story about new airport security scanners that will soon be deployed around the country. Within the next year, experts expect that two-thirds of airline passengers will be screened with the new technology. While half of the new scanners will use millimeter wave technology, which does not involve any radiation exposure, the other half will use x-ray technology. And while the predicted dose of radiation from any single scan is low, experts are worried about the cumulative effect of this additional dose of radiation on top of other exposures, especially for those of us who have BRCA mutations. These mutations make us less able to repair the damage done by ionizing radiation, thereby making us more sensitive to its effects.

Those of you who have read Positive Results know that any additional radiation exposure when you have a known BRCA mutation is an issue. Even the decision about the age at which to begin annual mammograms is not simple when you have a BRCA mutation. While mammograms can detect cancer and save lives, frequent mammography in young BRCA-positive women may actually cause additional cancers to develop later in life.

I have a number of concerns about screening with these new scanners:

  1. The radiation is to all parts of the body.  While mammography does deliver a greater dose of radiation than do the new airport scanners, that radiation is not dispersed over the entire body.  Experts contend that air travelers are exposed to significantly more radiation just by being in a plane flying at 30,000 feet than they will receive from these scanners.  Specifically, they claim that the amount of radiation from the scanner is equal to an additional four minutes of flight time at altitude.  The problem with this argument is that it assumes that maximum radiation exposure is the published "average," which is likely not going to be the case.  Experts admit that the radiation dose to the skin will be higher than the average, but they have not quantified how much higher.  And that is assuming that the machines are calibrated correctly and do not malfunction in a way that leads to overexposure.
  2. Because experts concede that skin cells will be exposed to radiation levels higher than the published average and because BRCA carriers are already at increased risk of skin cancer, I am greatly concerned about how frequent use of these scanners will affect our future skin cancer risk.  The fact that we do not know the amount of radiation exposure our skin will get during one of these scans seems particularly problematic to me.
  3. Another concern is that many of us fly frequently.  If we spend as much time on planes as do Alex and Ryan in the movie Up in the Air then we are going to be screened with these new scanners a lot.  So far there are no scientific studies that show what effect this additional radiation exposure will have for those of us with BRCA mutations.
  4. What about our children?  We already know that childhood radiation exposure is more harmful to those of us with BRCA mutations than is exposure later in life.  Most of us do not know if our children carry our deleterious BRCA mutations because testing children for a genetic predisposition to an adult-onset disease is not considered ethical.  Should we allow our children to be scanned by this new technology?  If so how many times over the course of their long lives will they be screened this way?  What is the total accumulated additional radiation dose they will receive?
Fortunately, we can opt out of screening through this new x-ray technology.  While I am a compliant traveler, for now I will politely decline screening through any technology that exposes me to additional radiation, however small the exposure is estimated to be.  And I will do the same thing for my kids.

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Tuesday, May 25, 2010

Ovarian Cancer Activists Request Additional Research Funding

The day after our last post, ovarian cancer activists, including representatives from the Ovarian Cancer National Alliance, took to Capitol Hill requesting $30 million in funding for ovarian cancer research. As we all know, this funding is desperately needed. You can read more about the hearing here.

What is the next step? To add our voices to the Ovarian Cancer National Alliance's Action is Teal campaign by letting our elected representatives know that funding for ovarian cancer research is important to us. You can contact your senators and representatives through this link.

Are you ready to scream?

Wednesday, May 19, 2010

I can hear the screams now ...

I can hear the screams now.

“Nobody is touching mine…”

What if testicular cancer were as prevalent as breast cancer? What if a gene were discovered that would result in a 60 percent to 85 percent likelihood that any man carrying a mutation on this gene would develop testicular cancer? Can you imagine doctors telling men: “Well, your best choice is preventive surgery. We can remove your testicles before cancer develops and we will replace them with silicone balls; the scars will be small and nobody who sees you in a locker room will ever be able to tell that you are a eunuch.”

Now can you hear the screams of the angry men?

“NOBODY is touching mine …”

Men would demand better options. Men would demand more research. Men would not submit quietly to surgery to remove their sexual organs without a diagnosis of cancer.

Yet women make the equivalent unthinkable decision every day because we do know about the BRCA genes. And what we know is that women with mutations on these genes face up to a 60 percent to 87 percent lifetime chance of developing breast cancer and up to a 27 percent to 45 percent lifetime chance of developing ovarian cancer.

What are we told by our doctors? “Remove your ovaries as soon as you are finished having children, preferably by the time you are 40.” And “prophylactic mastectomy is the most effective way to prevent breast cancer.” Never mind that what we are removing are the parts of our bodies that make us uniquely female. Never mind that even with reconstruction our “breasts” will never again nurse a baby or have sexual response. Never mind that surgical menopause may forever change sexual response and enjoyment. Never mind …

I mind. I mind very much. I would like to keep my body parts and my hormones but have been told that the clock is ticking on my ovaries and they must go. But is surgery the best solution for breast and ovarian cancer prevention? I think not. To achieve prevention under the current paradigm requires women to sacrifice fertility, endure early menopause, and often to sacrifice libido and body image. The price is too high. Better options would be finding ways of detecting breast and ovarian cancers when they would be easily curable for most if not all women.

While progress is being made with some types of breast cancer, the same is not true for ovarian cancer. For ovarian cancer, preventive surgery is the only viable preventive strategy for those of us who face a greater than one-in-four chance of developing this deadly disease. Surveillance offers no assurance that ovarian cancer will not claim our life because 80 percent of ovarian cancers are not detected until they will likely be fatal, no matter what the treatment.

Faced with a choice between Russian roulette with her life and surgical menopause, a woman will logically choose menopause. But she should not be forced into this choice. I believe that if men faced 40 percent chance of developing cancer of their sexual organs and the disease had an 80 percent likelihood of being fatal, the national discussion would be different. And funding would be found.

Our collective consciousness about breast cancer is bathed in a sea of pink each October. Why? Because women — multitudes of women — demanded that the nation pay attention to this disease. Susan G. Komen for the Cure collects millions of dollars from those pink donations and sale of pink product and pours many of those millions directly back into important research. Komen's funding for breast cancer research is second only to governmental funding for such research. Komen and other breast cancer organizations do tremendous work to find ways to prevent and cure breast cancer.

Ovarian cancer preventions needs the same type of research funding. September is ovarian cancer awareness month and is represented by a teal ribbon, did you know? Our world is not bathed in teal in September the way it is bathed in pink each October even though ovarian cancer is one of the most deadly women’s cancers and effective early detection methods do not exist. Research money only comes to those who are loud and create a public dialogue. September needs to be bathed in teal. Our lives depend on it. And I intend to scream.

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Tuesday, May 18, 2010

Welcome to the Positive Results Blog!

Positive Results
went to the printer six months ago and guess what? New research has continued to be published. Nothing published so far would change a single recommendation in our book. Nonetheless, our readers are interested in knowing our thoughts on current research, which is one of the reasons we are starting this blog. We will continue to provide reliable information to our readers, who are facing and fearing breast and ovarian cancer.

This blog will also be a place for us to share stories about the amazing women and men we continue to meet and who inspire our work. While Positive Results has many stories of men and women facing the specter of hereditary breast and ovarian cancer, not every story could be included. This blog will be a place for us to share other stories and experiences. If you would like us to include your story, write to us at

Finally, we will use this blog as a space to answer reader questions about issues relating to the genetics of breast and ovarian cancer, genetic testing, risk management and any other subject covered by the book. We may have a few random musings as well.

Thanks for joining us,
Joi & Ora