Metastatic Breast Cancer Advocacy IN Canada

Why Does Metastasis Matter? 

Canadian Cancer Research Conference, Vancouver, November 5-7, 2017

Nathalie Baudais, a participant in the Patient Involvement in Cancer Research Program (PIP) at the 2017 Canadian Cancer Research Conference and co-chair of the Mechanisms of Metastasis session, gave the following introduction reminding  researchers how important their work is to patients living with metastatic disease. 

I am a patient advocate and am thrilled to be involved in the patient involvement program at this year’s conference. I wanted to share my story with you today bring a patient voice to our session.

I’ve had a long relationship with cancer research. I feel like you are my peeps. The work that you do makes such a difference in the lives of those living with cancer.  

Let’s start about 15 years ago. I was 24 years old and found out that I had the BRCA1 gene mutation. I decided to go with the annual monitoring route until after I had children. At 29 years old, I missed my annual mammogram because….I was pregnant! During the pregnancy, I developed a lump but waited until my next appointment after my son’s birth to investigate it. My son, Liam was born. And 6 weeks later, I had my diagnosis. Locally advanced, triple negative, breast cancer. The tumour was 8.5 cm in size.

My treatment regime started with neo-adjuvant chemotherapy to shrink the tumour prior to surgery. I got dose dense AC Taxol, followed by a bilateral mastectomy with axillary lymph node dissection followed by 25 radiation treatments. Research had shown that these treatments were effective for my type of breast cancer. My prognosis was good. I was in remission.

I had follow-up scans every 3 months for the first year after treatments were completed. The following year, I decided to pursue breast reconstruction and a prophylactic bilateral salpingo oophorectomy.

A year after that, I got my mets diagnosis which was a real pain in the butt. Figuratively and literally. It showed up as a tumour in my left buttock. It was treated similar to my initial tumour. Neo-adjuvant chemotherapy followed by a lumpectomy and radiation treatments. Cisplatin and gemcetabine were chosen because research had shown a good response for BRCA patients. At this point, I was considered to be at no evidence of disease but I still had follow up scans every 3 to 6 months.

During one of my routine scans, my lung mets was found. I was lucky enough that it was only one lesion so my treatment involved a VATS to confirm that it was only one lesion. They removed my lower left lobe and followed up with 4 chemo doses. I was back at no evidence of disease. And I’ve been there since. It’s been 4 and a half years.

Living with metastatic disease means you live with uncertainty. We tend to live in 3 or 6 month increments, the time between scans, hoping that things are NED or stable for as long as possible. I’m very fortunate to be well enough to live an active life. I work full time, I travel, I volunteer. Living with mets means you have to balance quality of life versus quantity of life. With each treatment choice, we have to decide if the side effects are worth the time that we may gain with the treatment. I want to live well and I want to die well.  

There are many others who are not as lucky as I have been. They stay in treatment until there is progression and move from one treatment to the next treatment until there are no more treatment options.

I wanted to share my story with you today but keep in mind that there are so many other stories out there waiting to be told. There are so many unanswered questions in metastatic cancer research and many of us in the metastatic breast cancer community are actively looking to educate others and bring awareness to these issues. We are working to allocate more funds to this field of research. One of the ways we do this is through the CIBC run for the cure which allocates funding from any team with “metastatic breast cancer” in the team name to research and supports for MBC. The photo on the left is my team from last year and the photo on the right is my team from this year. And the team will be even bigger next year.

I am so grateful for all of the advances that have been made in research and everything that I have gained from that research. But I’m greedy. I think it’s in our nature to be greedy. I want more. More clinical trials, more treatment choices, more equitable access to drugs, more time. I am relying on you to please give me more.

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