Monday, December 15, 2014

TO REMAIN BREATHING

Updated 12/17/14:   RIP Annie Goodman. 

I tweeted with Annie back in March. I have included that interaction below.
I dedicate this blogpost to Annie as "she wanted to bring attention so more women wouldn't have to follow her." 

Annie Goodman was BRCA1 positive and had triple negative breast cancer. She passed away today at only 33 years old--the same age my grandmother Lillian passed away in 1934. 



@BRCAresponder 





You may not understand everything surrounding increased cancer risk. If you have a family member or friend diagnosed with a BRCA gene mutation, other genetic mutation, or diagnosed as high risk for certain cancers, please read this. My hope is that this post will inform and enlighten you about increased cancer risk and cancer risk management decisions.






Research studies, scientific abstracts, The "Angelina Effect", the "Etheridge controversy"... 

The research, the news articles, the conversation--it's all good. BRCA gene mutations are getting attention. 

But, let's bring it back to earth for a moment. It's important that there is some tangible perspective on what dealing with an increased risk for cancer actually FEELS like to an individual; a not so gentle reminder that there are people everyday learning that they carry a BRCA gene mutation, other genetic mutation, or a genetic variant of unknown significance. There are some people living with an increased risk for certain cancers simply due to their family medical history. There is no "one size fits all" approach. Cancer risk and cancer risk management is highly patient specific. What is clear for individuals with increased risk for certain cancers, is that there are heavy decisions surrounding cancer risk management. 

Everyone has their own personal experiences and beliefs that go into their own cancer risk management decision making process. I want to share some of my thoughts in my own decision making process. I'm hoping it will educate and enlighten others on how deeply personal these risk management decisions are plus the many, many layers that can go into the hereditary cancer risk management decision making process.  

GOT RISK? 


For me, the bottom line was: 
I wanted to remain breathing--I wanted to be alive, to live.


I made my personal decision to have preventative surgeries (bilateral prophylactic mastectomy and reconstruction and complete prophylactic hysterectomy) based on MANY factors...here are JUST 18 reasons I made my very personal decision:

 1) I carry a BRCA1 genetic mutation & the science indicates I have a very high risk for cancer. I educated myself and learned that these surgeries were currently the best chance/best option I had at DRASTICALLY reducing my breast cancer and ovarian cancer risk. As a BRCA positive woman, it was my best chance for "a cure".
 2) the actual large pattern of MANY breast and ovarian cancers in my family-with many deaths at YOUNG ages 
 3) I previously had a benign brain tumor; a very intense experience both physically & emotionally -- I decided I did not want to EVER go through an actual cancer diagnosis if I could help it. I was already having brain scans every few years. I saw a life before me of brain scans and boob scans. I did not want that to be my existence, my life.
 4) seeing my sister on the ground in the relentless, death pain of ovarian cancer. 
 5) watching my dear friend Kristin (also BRCA1 pos.) go through triple negative breast cancer (very difficult to treat) , radiation, chemotherapy, and then die at age 42 leaving behind her young daughter and husband. 
Kristin
My grandmother

6) knowing the research shows that BRCA1 carriers tend to get triple negative (very difficult to treat) breast cancer - I had no interest in having triple negative breast cancer or any kind of breast cancer ever if I could help it 
7) having utmost confidence in my breast surgeon and plastic surgeon, both knowledgable about BRCA mutations. 
8) Knowing my grandmother died at 33 years old of breast cancer in 1934 & having the knowledge that her fate did not have to be mine 
9) not wanting to live with constant anxiety- anticipating my next MRI's, mammograms, ultrasounds. I didn't want to live a life of anxiety.
10) Knowing that there are no accurate surveillance methods for ovarian cancer 
11) My sister had uterine cancer in addition to ovarian cancer...and then went on to get breast cancer 

Me & My Sister

12) A nipple sparing, skin sparing bilateral mastectomy with reconstruction can be a one-step surgery--the nipple and skin remains intact. Reconstruction has come a long way. It's just fat and tissue I thought--& who needs fat and tissue if it can kill you! Let's replace that stuffing so I can live. 
13) the anxiety of constantly touching my breasts to feel for lumps 
14) I did not want to go through chemotherapy if I could help it 
15) Knowing I needed to be here for my kids 
16) I needed to be here for my husband 
17) I needed to be here for me 
18) I needed to live, to be alive; to remain breathing.

Amy Byer Shainman
BRCA 1 positive, previvor
BRCA/Hereditary Cancer Health Advocate

*Everyone is different. Cancer risk management is highly personal and highly patient specific.  What is right for one person may not be right for another. Always do your own research and consult with your own medical professionals. 

Find a Genetic Counselor: 

www.nsgc.org
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