Previvor Day

Today is the first National Previvor Day.  I am a previvor so it must be my day right?  Wrong.  This day is not for me, or even about me.  If you read my last blog you know that this day is, in my opinion, for saving lives.  The life you save may belong to your daughter's soccer coach, or your son's freind's mother.  Or perhaps your child's fifth grade teacher.

We are mid way through National Hereditary Breast and Ovarian Cancer Week and despite the hundreds of press releases sent out by FORCE, Facing Our Risk Of Cancer Empowered, our national day in the sun had yet to garner any national media coverage.  And it is not for lack of effort on my part.  I have hounded more editors and producers in the past two weeks than at any time in my life.  They may not cover it, but there are many more media outlets out there who know about HBOC week.

So if the mainstream media is not covering HBOC Week and Previvor Day what do we do?  We continue to do what we have always done, talk to our friends and tell them about  our experiences.  Doing so is the start of conversations that will lead to women we care about becoming more informed and considering their breast and ovarian cancer risk.  One of the conversations I had some time ago went something like this:

"I heard you wrote a book."

"Yes, but is is not a lighthearted romp; it is a book about hereditary breast and ovarian cancer."

"My mom died of ovarian cancer.  But I have always chosen to stick my head in the sand, I just don't want to know my risk."

Now I have to admit that at this point the conversation became decidedly awkward.  I am a big advocate of genetic testing and of taking preventive action to preserve health.  But I am also a big believer that everyone must choose their own path in life and that what might be right for me might not be right for someone else.  I chose to tell this acquaintance the truth:

"My mother had breast cancer and I spent a lot of years avoiding genetic testing because I was not sure I was ready to deal with the information.  Now I am really happy I did but you have to do what is right for you.  If you have any questions I am happy to talk with you any time."

That was the end of the conversation.  I don't know if she has ever cracked the cover of Positive Results, although there is a copy where she works so I know it is available to her.  We have not talked about this issue in any of our more recent encounters.  But that is fine, she knows the information is available to her.

The bottom line is that we are increasing awareness one woman at a time.  I consider that a good start.  Next year, maybe more.

National Hereditary Breast & Ovarian Cancer Week is here!

This week is the first ever National Hereditary Breast and Ovarian Cancer (HBOC) Week.  Why have you not heard?  Likely because Congress did not act to declare this week National HBOC week until September 15th, which did give much time for getting out the word.  Nonetheless, FORCE, Facing Our Risk of Cancer Empowered, has made heroic efforts to let everyone know about this important event through their Raise Your Voice campaign. 

Why do we need HBOC Week?  Every month is an awareness month for something, indeed September is already turning teal for Ovarian Cancer Awareness Month and October is awash in pink for Breast Cancer Awareness Month.  Why do we need more awareness of these diseases?  Isn't this enough? 

For me and for thousands of women like me, the answer is no, it is not enough.  And this is not because we seek to be honored or feel any swell of pride from this national recognition.  Rather it is because we are sick and tired of watching our friends and relatives battle and often die of these diseases when they could have been prevented through the gift of genetic knowledge.  I have watched as breast cancer relentlessly claimed the life of a friend who had never heard the term BRCA until after her breast cancer was terminal.  Even then she did not give up hope, she battled bravely and hard for nearly four years, but in the end, it was the lack of knowledge of her genetic condition that took her life.  Had she known that her mother's breast cancer could also be her fate she could have started surveillance earlier.  Had she known at the time of her first breast cancer diagnosis that her cancer was the aggressive hereditary form of the disease she could have attacked it with chemotherapy rather than just a lumpectomy and radiation.  It was not until the cancer had spread to her vital organs that any doctor ever mentioned genetic testing or the BRCA genes to her.  The medical profession failed her on many levels:  no doctor ever looked at her family history and mentioned genetic testing to her; no breast specialist or oncologist ever mentioned genetic testing to her when she was diagnosed with breast cancer in her early 40s; no doctor ever mentioned to her that triple negative breast cancer in a young women with a family history of breast cancer is more likely to be genetically linked and need more aggressive treatment.  Had she had the gift of knowledge at any of these junctures she might still be here today, walking with me on the beach as we often used to do.  But she didn't.  When she did find out she had a BRCA mutation and learned that mastectomy prevents additional cancers in BRCA-positive women, she consulted surgeons about removing her breasts.  Instead of reassurance, she was told that it was like "shutting the barn door after the horses have already been let out."  Her breast cancer was in her vital organs; removing her breasts would not preserve her life.

So HBOC week is not for me, nor for the few thousand women and men who already know they are carriers of BRCA mutations that put them at high risk.  HBOC week is for the hundreds of thousands of women and men who do not know they are at high risk.  It is for the hundreds of thousands of women whose doctors will never look at their family history and start a discussion about genetic testing.  Those of us who do know need to shout from the rooftops, not for ourselves, but for those whose lives can only be saved by knowing they are at risk.

HBOC Week is opportunity knocking.  It is time that we all raise our voices.

1 a Minute

1 a Minute is docudrama that follows a woman's journey through breast cancer. At each stage of her journey, the celebrity stars of the film (survivors from around the world; or those affected closely by it), jump in and recount their experiences at that point in time.  The film also includes breast cancer experts and our own Dr. Ora Gordon is among them discussing hereditary breast cancer and genetic testing.  1 a Minute will be shown at theaters nationwide on one night, October 6, 2010 to raise money for a cure with all proceeds going to Susan G. Komen for the Cure.  The evening promises to be a memorable one.  Check it out.

Maximizing Your Breast Cancer Screening: What Women Should Know

There are a variety of screening tools available for women for screening for breast cancer. Dr. Ora Gordon will provide a free Community Education Lecture sponsored by the Wasserman Breast Cancer Risk Reduction Program at Cedars-Sinai Medical Center.

Dr. Gordon will provide vital information to help clarify what are the appropriate screening recommendations for you.

Location: 
Thalians Auditorium
8730 Alden Drive
Los Angeles, CA 90048
Free Parking Lot P2 (entrance on George Burns
Rd)

For more information or reservations call (310) 423-9373.

Kickin' into high gear for Kickin' Cancer

At 9 a.m. the starting shot sounded and 2,000 bodies pressed forward.  Those at the front of the pack were off to a fast start on this sunny and mild day in Los Angeles.  Those of us in the middle of the pack were off to a decidedly slower but no less enthusiastic start as the music blared and the crowd cheered.

Today was the 9th annual Lynne Cohen Foundation Kickin' Cancer 5K run/walk and the entirety of Team FORCE, me included, was in the middle of the pack where it took at least a minute and quite possibly several minutes to even cross the starting line.  It has been more than 20 years since I have run in such an event with so many runners.  The last time I ran this type of event I was 20 years younger and running 6 days  a week.  This time I am not only older, which clearly has changed my running immeasurably, but I am also a mere 6 weeks post-op and not fully back into shape.  For the first 4 weeks after my BSO and hysterectomy my only exercise was walking, slowly at first then gradually increasing to a normal pace and for longer periods of time.  Two weeks ago I began adding a little very slow jogging to my walks, starting with only half a mile or so at the end of a walk.  Just more than a week ago I realized that if I was actually going to attempt running (jogging actually) this 5K then I was going need to kick my workouts into high gear so to speak.  In the past 9 days I have either run or been to the gym 7 times with three runs that were at least three miles.  These runs were not nearly as easy as I had hoped but I did know that I could compete the course, provided I didn't start too fast and run out of steam.

Team FORCE

Team FORCE had 21 members and raised more than $8,500 to support FORCE and the Lynne Cohen Foundation in their work to enable under served women to have access to genetic testing and to find a cure for ovarian cancer.  My FORCE sister Robin graciously agreed to run with me and the rest of Team FORCE was composed of walkers.  Robin and I got off to a slow start because of our location in the middle of the crowd but within the first half mile we found a comfortable pace and the crowed thinned.  Robin only ran with me so that I would not be running alone, as she said she has not run in "a long, long time" (she only bikes).  It became clear to me within the first mile, however, that Robin is in far better aerobic shape than am I.  At the half way point I was breathing hard and having difficulty with our ongoing conversation, although the pace was still comfortable.  Robin seemed to have not broken a sweat and was not breathing hard at all.  When I told her it was clear that even though she claimed to no longer be a runner, she was in far better shape than I am she graciously reminded me that it has been 10 months since her most recent surgery, whereas it has only been 6 weeks for me. 

We did complete the 3.2 mile course without stopping (I did slow down a bit in the 3rd mile) and crossed the finish line in under 30 minutes.  Neither of us knows how long it took us to cross the start line after the official start of the race but we are assuming it was about 2 minutes, thereby making our time about 28ish minutes.  Considering my age, my recent surgery, and my lack of "training," I am quite proud of that time.  Next year, maybe I will do better.  But for today, I could not be happier with my own efforts and more importantly, with the outstanding fund raising work done by Team FORCE for this important cause!