Raising Awareness of Hereditary Cancer

 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.

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.


Posted on October 18, 2009, in brca, breast cancer, cancer advertising, FORCE, Uncategorized and tagged , , . Bookmark the permalink. 7 Comments.

  1. Hi Ellyn,
    I am in the reconstruction process. I am brca 1 and I had my prophylactic bilateral mastectomy on June 10. This Wed I will have my exchange surgery.

    This has been a lonely journey. Most people have never heard of the gene mutation and many people are horrified (as I was) at having unnecessary surgery. FORCE was a wonderful resource, but I believe that more people need to know about this. I think a huge publicity event would be a great way to do it.

    I belong to the Ethical Humanist Society of Long Island and I am a board trustee, which means I can rent this building for an inexpensive rate. The building can hold 300 people. I wonder if there might be a group that might want to join me in this endeavor. Thanks for posting!

  2. I am BRCA2, and Sarasota Outreach Coordinator for FORCE. I am starting a non profit to raise awareness and educate about heriditary breast and ovarian cancer. Part of our services will also be funding for genetic counseling and testing. Maybe we could set up the same type event in several cities at the same time. I would also like to put together a book or something with stories of the journey from different women after they learn they are BRCA+. I also think we need to make more men aware that this affects them also.

  3. I don’t have any suggestion, just wanted to share this piece in Newsweek: http://www.newsweek.com/id/218243

    It really affected me. Here is a woman who is told she is “too young” to have breast cancer and turns out to be at stage IV. She’s a BRCA gene carrier, but it sounds like she wasn’t tested until later in the process. If she had known her status, would her doctors have taken her more seriously earlier on? It’s just devastating to realize how much education is still needed — especially in the medical community.

  4. Thanks for your comments and suggestions and thanks Steph for posting the article. It illustrates exactly why we need to create awareness on a much broader level.

  5. Ellyn,
    Glad you are raising awareness for breast cancer. Although I am not BRCA+, I am 30 years old with a 18 month old son and am fighting metastatic breast cancer. A very good friend of mine is BRCA+ but her cancer has not recurred, thankfully. I am commenting to let you know about another great resource called Metavivor. Did you know that 20% of breast cancer patients will receive a stage IV diagnosis eventually? Furthermore only stage IV breast cancer is life threatening, no one dies from stage I-III. But oddly, only a tiny fraction of money raised for breast cancer research actually goes towards metastatic breast cancer research. Both myself and my BRCA friend found our lumps while breast feeding and we were both under 30, making it impossible to see anything on mammogram. Despite all the screening and imaging done, people are always going to slip through the cracks and miss early detection and 20% are going to have recurrances anyways. Doesn’t it then make more sense to catch the people who are falling instead of trying to force people into screening that may or may not help them.
    Kristin Schwickerath

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