Ellyn Davidson’s Weblog

 I’ve spent a lot of time in the past month thinking about hereditary cancer issues.  Last Friday, I spoke to the Michigan Cancer Genetics Alliance about FORCE.  And in between, I’ve had two FORCE outreach meetings. In speaking to the MCGA, I communicated my concern with the lack of awareness of both hereditary cancer and the importance of Genetics Counselors in the process.  Through my interactions with many of them, I know that they have similar concerns.  They had some nice suggestions of various groups within Michigan that may help me take on this issue.  I talk to women everyday who don’t know they are at risk and don’t know what to do if they are at risk.  Clearly I fit in the “didn’t know I was at risk” category. We’ve come along way through organizations like FORCE and Be Bright Pink but we still have a long way to go. 

FORCE coined a term to give people with a hereditary cancer genetic mutation a name.

At my most recent FORCE meeting, I met a woman who’s sister was diagnosed with DCIS (stage 0 breast cancer).  Prior to this diagnosis, she had no idea that she was a risk for a BRCA mutation.  She tried to get genetic testing but her insurance company turned her down.  6 months later her sister was diagnosed with stage 3 breast cancer and 1 year later is back with more cancer.  Could this be avoided?  This is just one of many stories I hear.  How can we make sure that more women have the knowledge they need to ultimately avoid a cancer diagnosis?  Do we need a specific week devoted to hereditary cancer awareness?  I need your help, my readers, to make sure that we are able to inform, educate and spread the word.  We are a small but mighty group and we can do this together.  Post some comments and let me know how you think we can make an impact.

In my last post, I wrote that it had been a long interesting week.  On Wednesday, just one day before the start of breast cancer awareness month, I had the opportunity to hear Nancy Brinker speak at the Mothers Daughters Sisters and Friends luncheon benefiting the Francee and Benson Ford Jr. Breast Care and Wellness Center at Henry Ford Hospital.  Since I was diagnosed with breast cancer, Nancy Brinker has become one of my personal heros.  27 years ago, she promised her dying sister she would do everything she could to end breast cancer.  And apparently when Nancy Brinker sets her mind on something, she doesn’t give up.  

Hearing her speak gave me a sense of hope and filled an intense sadness I felt just one day earlier.  Susan G. Komen is the organization that has funded the research to keep so many women alive.  Susan G. Komen is the organization that changed breast cancer from a deep dark secret to an everyday conversation.  And because of Susan G. Komen, during the month of October, we are surrounded by pink to honor and recognize those that continue to fight.    I am proud to be involved with this organization and so happy I had the opportunity to hear Nancy in person.  What a great way to head into October.

Thank you Nancy for inspiring us, leading us, and never settling for anything less than a world without breast cancer.

It’s been a long interesting week, and I finally have a moment to share.  After my diagnosis, I was connected to an acquaintance that had just finished her journey.  She became a mentor of sorts—supplying me with cute hats, sending thoughtful cards and calling or emailing to check in on me.  She was honest and inspirational all at the same time.  We’ve kept in touch over the past two years—because breast cancer and the BRCA gene that we both share create somewhat of an unbreakable bond. 

Just days before the Breast Cancer 3-Day, I learned her cancer had spread.   The words our mutual friend shared with me twisted my heart, took my breath away and made me feel like I had the biggest kick in the stomach.  Two days later, I walked and prayed and kept her in my continuous thoughts.  The walk this year had a whole new meaning for me personally.  I guess before this news, I lived in my blissful and optimistic world of thinking that those of us diagnosed with early stage breast cancer these days simply needed to do our time, have our surgeries, chemo, etc. and go on to live long healthy lives.  While this news shattered that for me, I also felt incredible sadness for her and her family.  I know her journey will be a tough one—I also know her incredible strength.  On Monday Night, I got an email from her.  She was back in the chemo chair as part of a PARP Inhibitor clinical trial.  More hopefulness as these are the drugs that are showing the most promising results.  She remains part of my daily thoughts and prayers.

About a year ago, I found a blog through my friend Pam.  The blog was written by a young woman in Minneapolis raising three young children and battling late stage breast cancer 1 year after her early stage breast cancer diagnosis.  I read her blog for several months following her journey.  Just minutes after I read my friend’s email on Monday Night, I ventured over to Pam’s blog to learn that Cari had lost her fight.  More heartache, sadness and the reality of this dreadful disease came crashing through me. 

At the same time, breast cancer awareness month is kicking into high gear.  I know there are many questions and potentially even criticisms about the amount of effort and money put into this disease.  But we can’t stop.  Not even for a minute.  Not when stories like this continue every day.  Breast Cancer is real and it’s cruel and we have to find a way to stop it in its tracks.  It can’t continue to rob children of their mothers, to steal wives from their husbands, to make parents feel the pain from the loss of a far too young daughter.  It must go away and until it does, I’ll keep fighting and I hope you’ll keep joining me.