I have never been a fan of roller coasters, too much up and down, made me feel sick.  Ironically, my life seems to have become a gigantic roller coaster ride! 

For Shelley Scott of Winnipeg, a metastatic breast cancer diagnosis in November 2016 had a silver lining.

“It helped me appreciate the moments of my life rather than worrying about what might be, which is kind of a gift,” she says.

She tells the story of two coworkers she knew who planned a big trip for the time when they both were retired.  They never made the trip because one of them died.

In August 2016, Erin Richard of Sydney, Nova Scotia was diagnosed with triple negative metastatic breast cancer.  She was only 39 years old.

I learned about “timely and equitable access” to oncology drugs at the Canadian Breast Cancer Network's metastatic breast cancer advocacy training in 2013. I was the first in Canada prescribed Perjeta, days after Health Canada approved the drug. My oncologist shared exciting trial results about dual blockade (using two drugs simultaneously against breast cancer). The trastuzumab emtansine (TDM-1) trial had closed days earlier. Another combo was available but it was “back pocket.” The caveat was that it wasn’t funded but my extended health insurance benefits agreed to pay. On route to my first infusion, I penned a sign: BELIEVE. We did. I had dozens of liver and lymph mets and my liver was failing. After two rounds, I had normal liver enzymes and after three, normal tumour markers.

I was born and raised in Southern Alberta and moved to Calgary to attend university and eventually raise my family here.  I am an active senior who enjoys singing with a Calgary performing group, travelling with my husband, watching sports and movies on TV, spending time with my two daughters, who both live in Calgary, keeping in touch with my granddaughter, who now lives in Victoria, and watching my grandson grow up and enjoy his activities.

On July 19, 2011, at the age of 33, I was diagnosed with breast cancer. With a 10-month-old son, I was still glowing with the joy of motherhood—but when a lump that I had been attributing to breastfeeding challenges refused to go away, I decided to see my doctor.

The more researchers and doctors learn about cancer, the more they are beginning to understand that there isn’t one standard approach to treating it but many factors to consider to come up with the best treatment plan for each person. New research is adding to this knowledge and instead of treating a cancer based on its location in the body, clinicians are starting to personalize and improve treatments for individual patients based on genomics.

My life changed forever once I received the phone call no one wants to get early one morning in March 2015. My surgeon was on the other line with the results from my recent biopsy. The lump that was supposed to be only a pesky cyst was indeed cancerous. The surgeon further explained my diagnosis. But the only thing I heard was that I had cancer. My world felt like it was spinning out of control.

If you have had surgery for breast cancer, you are at risk for lymphedema, a chronic swelling of the arm or another body part due to build-up of fluid. (This fluid, known as lymph, transports white blood cells and cellular debris throughout the body.)  Removal of lymph nodes under the arm during breast cancer surgery or radiation therapy can cause a blockage in the lymphatic system, which causes lymphedema. It can develop shortly after your surgery or many years later.

How valuable is patient input to decision-makers and how can we work to make sure that the patient voice is really being heard? These are just some of the important questions that I and many others gathered to discuss at the annual Breast Cancer Patient Group Forum in Vienna, Austria.