Dr. May Lynn Quan
Having a doctor deliver a cancer diagnosis can be a devastating experience no matter your age, but it can be especially difficult for young women with breast cancer. Not only do women often have worse outcomes when they’re diagnosed before the age of 40 but having to undergo treatment on the cusp of starting a relationship, raising a family, or building a career can be a very different journey with a diverse set of challenges compared to breast cancer patients over 50.
Dr. May Lynn Quan, a Calgary-based cancer surgeon at the Foothills Medical Centre and researcher at the University of Calgary, treats many young women with breast cancer. Over the last five years her research has focused on a study called Reducing the Burden of Breast Cancer in Young Women (RUBY) that addresses the specific challenges younger breast cancer patients face.
“I want to focus on the people that’s we’re treating and try to support them.” —Dr. May Lynn Quan
Launched in 2015, RUBY is a pan-Canadian study with a network of 30 clinics, cancer centres and other institutions where breast cancer patients have surgical complications. Currently, RUBY has a cohort of more than 1,200 breast cancer patients under 40 who have agreed to share their medical trajectory with Quan’s team, including things like treatment response, as well as their personal experiences, with the goal of improving outcomes. Cohort members are also donating blood and tissue samples, which will allow the team to test for any genetic components linked to their cancer. Last year, Quan received additional funding from a partnership between the Alberta Cancer Foundation, Canadian Cancer Society and Canadian Institutes of Health Research to extend that research further in a project currently dubbed Preparing to Survive: Improving Outcomes for Young Women with Breast Cancer.
“The average age of a woman with breast cancer is mid-50s,” Quan says. “The life stage that these younger women are at is usually different than the vast majority of women with breast cancer. When they look for resources online most of it isn’t referrable to them. There’s not a lot of information on how to deal with your toddler when you’re having chemotherapy.”
The new study is focused on identifying and addressing unmet needs and challenges faced by young breast cancer patients and will have three prongs. Firstly, patients from across Canada are currently participating in interviews. The information they provide will help Quan and her team understand the unique needs they’ve experienced through treatment. From there, the team, which includes medical professionals as well as patients who have had breast cancer, will develop a virtual self-management tool to help patients better cope with their breast cancer treatment. Finally, Quan will share the tool with half of the RUBY cohort, while the other half will receive standard of care. The two groups will then be compared to determine how well the tool works.
The tool itself will be modelled after an existing resource aimed at more generalized cancer patients. Quan says this is a skeleton starting point and hopes this process will allow her team to co-develop a unique tool with patient input. Quan envisions it as an online interface that women can access to help them cope, deal with and manage whatever they’re going through. Various modules will give users exercises to work on through their journeys. Patients would ideally be referred to the tool upon diagnosis so they could easily access the supports throughout treatment at their own pace without needing a referral from their oncologist.
“We want to empower women to help themselves and see that the first step is to manage the diagnosis and the challenges that come with it,” Quan says. “The study is about understanding exactly what these young women with breast cancer are going through to allow us to tailor it specifically to their needs.”
What makes RUBY and Preparing to Survive special is that both projects were born out of Quan’s direct experience with the patients she treats. She saw that those patients’ needs weren’t being met and wanted to do her part to support their holistic health and also help them establish a good quality of life both during and after treatment.
“It’s my privilege to treat breast cancer patients,” Quan says. “I want to focus on the people that we’re treating and try to support them, not only from a cancer outcomes perspective, but for their whole selves to allow them to have a stronger, more positive survivorship.”
Kate’s Story
Diagnosed with breast cancer in 2019 at the age of 47, Calgarian Kate Bilson doesn’t qualify to be part of Dr. Quan’s study, but as one of Quan’s patients at the Tom Baker Cancer Centre, she knows the importance of receiving emotional and mental health support throughout a cancer journey. As a busy lawyer, parent to a pre-teen son, and socially active person, Bilson’s cancer diagnosis shook up her life considerably.
But the diagnosis didn’t come as a complete surprise to her. Bilson has a history of breast cancer in her family and her father passed away from brain cancer at the age of 49, when Bilson was a teenager. Those experiences created a unique level of anxiety as she worried about how her illness would affect her son, knowing how difficult her father’s diagnosis had been for her. She even subjected herself to very painful cold cap therapy so that she could keep her hair through chemotherapy to create a sense of normalcy for her family.
“Finding the things that help you maintain some positivity is really important.” —Kate Bilson
In addition to receiving thoughtful emotional support from her doctors, Bilson was encouraged to seek out resources like the Alberta Cancer Exercise program and a variety of classes, workshops and discussion groups through Wellspring, an organization that offers community support for cancer patients, which helped her build a network she could lean on. Now through chemotherapy, surgery and radiation, and well into her recovery, Bilson recommends that other patients with breast cancer try to find similar activities that will soothe their minds and help them connect with others.
“I would encourage any cancer patient, but certainly young women going through this experience, to try out the different resources that exist to find something that speaks to them,” Bilson says. “Finding the things that help you maintain some positivity is really important.”
Bilson considers Quan along with her medical oncologist, Dr. Marc Webster, her superheroes. Their sensitive understanding of the emotional side of a cancer diagnosis was tremendously helpful. Recognizing that not all patients have the benefit of having such emotionally intuitive physicians, Bilson wanted to pay a bit of her good fortune forward by making a financial donation towards the Alberta Cancer Foundation in support of Quan’s RUBY study. Knowing how much Quan’s experience helped her through her own feelings of fear, anxiety and fatigue, Bilson is hoping she can play a small part in paying it forward to other patients.
“The primary reason for the donation was wanting to find a way to say thank you to the cancer care community at the Tom Baker, particularly for all the help, the care, and the compassion and getting me through one of the worst years of my life,” Bilson says. “I received a level of care that I want to thank them for properly. I don’t think I’ll ever find a way to do that, but I felt that this was a place to start.”
