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Health Is Not a Destination

by Amy Herskowitz, MSc

welcome to health

In April of 2010, I participated in a genetic study offered by the Women’s College Hospital Research Institute in collaboration with the University of Toronto, to test my DNA for two mutations in the BRCA1 gene and one mutation in the BRCA2 gene. These three mutations are more commonly found among individuals of Ashkenazi Jewish background and account for the majority of hereditary breast and ovarian cancer cases in this population. I was interested in participating in this study because my paternal grandmother died of breast cancer at the age of 35 and my maternal grandmother had breast cancer a few times in her life, despite dying of something else at the ripe age of 94. I figure it’s fairly likely that I’ll have to deal with it at some point in my life, so I thought it’d be wise to find out just how “at risk” I am, genetically.

I filled out a lengthy family history questionnaire, gave a sample of my DNA and spoke to a genetic counsellor about my building anxiety surrounding my participation in the study. Did I really want to know the cold hard truth? And what would I do if I learned that I did have one of the mutated BRCA genes? Would I change anything about how I live my life? Would I do something radical to prevent getting breast cancer? Some women do. I wondered if I would have to disclose this genetic information to potential health insurance companies. I had a lot of questions and even more apprehension as time wore on. The worst part was the waiting. The study comprised over 2,000 women of Ashkenazic Jewish descent in Ontario and I’d have to wait a year before I’d be informed of any results.

My understanding of genetics is fairly unsophisticated but I know enough to recognize that the genetic mutation alone would not seal my fate of developing cancer; something would have to encourage the expression of that mutated gene. Conversely, even with a confirmation of no mutations in my BRCA genes, I wouldn’t be guaranteed any freedom from breast or ovarian cancer in my lifetime. I know that it’s always a gamble and it’s best to play it as safely as you can when it comes to living a healthy, moderate lifestyle. I have a friend who has no family history of breast cancer and she developed it at the age of 32, had a double mastectomy and is lucky to be alive today at 38.

My year of waiting ended in June of 2011 when I got my mail and found a letter from the principal researcher and Canada Research Chair in Breast Cancer, telling me my genetic test was normal and that none of the three mutations in the BRCA genes were found in my DNA sample. The letter went on to caution me that while my negative test result means that I’m not at “very high risk” of breast or ovarian cancer, I’m still at higher risk of developing cancer than the average Canadian woman, due to my family history. In fact, my lifetime risk has been calculated to be up to 19.4% based on my current age, personal and family history. I’m not bothered by this; in fact, I was reminded of a book I recently finished (Marian Keyes’ The Other Side of the Story) where one of the characters experiences such an adrenaline rush after undergoing a few back-to-back life traumas, that she authors her own book about how grateful she feels that all the horrible things which happen to people every day didn’t happen to her today. Even though I didn’t have cancer in 2010 or any time before that, the fact that I received this piece of good news on that auspicious day in June made me grateful for my “lesser than horribly high risk” for developing it.

As an aside, when my Dad was first diagnosed with ALS, it started me worrying a lot about my own future health, since the only thing he ever complained about health-wise was his bad back. In the time after his diagnosis and his explanation of how he experienced his first onset of symptoms, I began getting anxious every time I’d have one of those muscle spasms that make your eyelids or your lip or your leg twitch. I still get pangs of anxiety when I get those twitches, whereas before we even knew of ALS, I used to enjoy those funny little spasms and think they were off-beat signs that my body was out of whack in some way. I never thought they could be signs of something more ominous. ALS doesn’t run in our family. We have no idea how or why my father developed it and died from it within 18 months of diagnosis.

My point is, with all the advances in genetic testing and what we can possibly know about our levels of “risk” for developing certain ailments, diseases or disorders, Life is still pretty much a game of probabilities. My stress and anxiety are probably the worst triggers for any of the myriad illnesses that I can develop, and worrying about every muscle twitch or whether my genes will one day turn against me and express themselves in ways that make me sick, will not help me live my life better, happier or healthier. Having come from a disordered eating background, my current “life in recovery” requires a HAES® approach to food where I absolutely refuse to restrict anything unless it causes me severe physical discomfort. The same applies for moving my body: if I am injured or sick or plain old exhausted and feel as though physical activity will not improve my wellbeing, then I do other things to nurture my body, like rest it, take it for massage therapy, physiotherapy or acupuncture treatments.

I recently had a blood test done by my naturopath to test for food sensitivities and she suggested that I avoid all the foods in my “red zone” for at least six months. That red zone area included the most common things I consume: wheat, corn and dairy. For me, applying the Health At Every Size® principles to my life means that I recognize when I’m cycling through periods of heightened stress and tension, and trust that I know my body’s signs for when it’s happy and when it is struggling. I will not be following a no-wheat/corn/dairy regimen for six months. I can, however, decrease my intake on those top three food types and see if that makes me feel better, and move on from there.

That letter I received in June of 2011 is a constant reminder for me to see things in their proper perspective: I am not sick today; I baked pastries and cleaned my apartment and did Pilates and ate food I enjoyed and didn’t get hit by a car or shot by a random bullet or struck by lightning.

Today is a good day.

Amy Herskowitz

Amy Herskowitz, MSc, is a senior policy and programming consultant for the mental health and addictions sector in the Ontario provincial government who has almost 15 years experience working with the eating disorder support, treatment, research and advocacy communities in Toronto.  Amy serves as ASDAH’s Vice President and chairs the blog committee, as well as serving on the internal policy and membership committees.

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