On the set of HIGH RISK: A Rethink Breast Cancer Documentary. I (Kelly) am in the middle with Carla to the right and Erika to the left.

Living High Risk

My sister Carla was diagnosed with stage III triple negative invasive ductal carcinoma at age 40, in October 2013. With a very minimal risk of breast cancer in our immediate families (our maternal grandmother was diagnosed conservatively at age 80), we were shocked and devastated.

Carla, always realistic and cloaked in positivity, was seemingly ready to tackle it head on. And did she ever! She approached every surgery, chemotherapy treatment, radiation session, reconstruction visit and follow-up appointment with a smile on her face. She never complained, got angry, or felt sorry for herself. All she wanted was to complete treatment and return to her “normal” life. And she did. This month on May 4th after a long 18 month whirlwind of medical activity and completed treatments, she returned to work. I have never been more proud of anyone in my life. I may be biased, but she is truly a remarkable human being.

Because of Carla’s age and the nature of her cancer, she was offered genetic testing. When she accepted and her results came back positive for the BRCA1 gene mutation (which led to her taking prophylactic measures to ensure the gene mutation wouldn’t get the best of her), the testing was extended to my mom, my sister Erika and myself. After researching the implications of a positive result and potential treatment options, we were all certain we wanted to proceed with the genetic testing. Our family has always been close. The most trivial of things can bring us together. Now we were faced with something that could alter our lives and the lives of our children forever. We were prepared for that, as long as we were together.

Results day in June 2014 was, well, strange. It felt real in that it was happening – I recall the stillness in the room as we waited for our lovely genetics counsellor to speak — but surreal because the scope of it all after she delivered the news was really difficult to comprehend in that moment.

All three of us were BRCA1+.

Erika cried because she knew her young family was not yet complete and was overcome by the ethics of it all. Mom cried because she believed she was responsible for passing on the gene mutation to her girls, and I nervously laughed a bit at the shock of it all. None of us truly knew what to say. What we did know however, without saying a word, was that we were going to be okay because we were together.

The following day our journeys from results to awareness and proactivity began. Today, Erika continues to wait for prophylactic treatment as she contemplates family choices. I had my ovaries/fallopian tubes removed in January 2015. At the end of March I underwent bilateral mastectomies with immediate reconstruction and continue to recover.

Ready – Set – Action!

I feel relieved. Secure in the fact that I have done everything in my power to stop this gene mutation in its tracks. Mom was all set as well.  Her first surgery (removal of ovaries/fallopian tubes) was scheduled for January 2015, on the same day as mine. Then it came.  She was diagnosed with breast cancer in November 2014, 4 months after we received our genetic testing results. However, because we were aware of the BRCA1 gene mutation and were therefore being monitored closely, it was identified by mammogram early and had not yet spread beyond the tumour’s walls. I have never been more grateful for anything in my life.  This emphatically supports the role of genetic testing and its impact on life.  My Mom’s life.  She continues through treatment with the same vigor and positive attitude as Carla. I love how feisty and strong she is.

The fallout…

Last night, it started. Throbbing pain in my hips radiating down to my knees. Today, I am finding it difficult to mobilize. I am 6 weeks post prophylactic bilateral mastectomies with reconstruction.  It can’t be related. Then for a fleeting moment, it surfaces. I am BRCA1 +. I recall the BRCA1+ cancer statistics in my head: 80% breast; 40% ovarian; pancreatic cancer, colon cancer. Nope, it’s not there – I don’t recall bone cancer at all. So I breathe deeply and chalk it up to possible over-activity the day before.

But then, I didn’t really do much. I am convalescing. I am being very careful because I don’t want to jeopardize my beautiful new breasts. So, I suppose this is how it’s going to be. Every ache, pain and action second guessed, considered, worried about. Is it my pesky gene mutation at play, or did I bend too quickly?

This is it. This is high risk living. It is forever and can’t be pushed aside.

I am then choked by guilt. I don’t have a breast cancer diagnosis. I was lucky. I got to choose my battles. To be proactive. Mom and Carla didn’t. They were forced to react. The BRCA1 gene mutation AND obscurity of recurrence now wrap around them tightly like a fuzzy fleece blanket in the dead of winter.  Always there, always reminding.  Just enough to send a stomach into a churning frenzy with a headache that lasts a little too long. Or an episode of chest pain that feels just a little bit different than before. Constantly trying to rationalize, yet afraid of the unknown.  It isn’t fair.

So I will swallow my guilt and rejoice in the power of knowledge. The power of medicine. I am grateful that I have been afforded the opportunity to somewhat control my destiny. To know that when the time is right, my 3 beautiful children will also be presented with the gift of genetic knowledge. To understand that I will always need to be more diligent where my health is concerned.  To know that I now have the best chance to be a daughter, a sister, a wife and a mother that much longer. Although my life will always be high risk, it is still a life worth living well.

-Kelly Scheifele

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