How To Advocate For Yourself And Make The Most Of Your Metastatic Breast Cancer Journey

Growing up, Laura Montgomery wasn’t one to advocate for her health. After all, any time she’d visit her family doctor with an issue, she’d leave feeling brushed off—an experience many can relate to. 

That changed in 2018, after she noticed a strange lump in her breast. “I immediately knew that something wasn’t right and went to the doctor,” she says, adding that once they felt the lump, they noted that it was probably nothing, but that they’d send her for an ultrasound, anyways.

The results were concerning, and after a month of pushing to get additional testing done sooner, it was confirmed that 30-year-old Montgomery had breast cancer, which they would later discover had already spread to her liver.

Taking the time to process

Receiving a metastatic breast cancer (mBC) diagnosis is stressful, scary and earth-shattering. Many people may feel overwhelmed, upset or even angry, says Dr. Christine Simmons, a medical oncologist at BC Cancer Agency in Vancouver. “Everyone’s journey is different,” she explains, adding that if there’s one thing she recommends, it’s to breathe. “Take a moment,” she says. Doing so can help you digest the news. 

What’s most important to you? Who can you rely on for support? How will this impact your life? Share your values with your care team. They are there for you.

After being diagnosed with mBC, Montgomery moved to the country with her family, and she’s now making every moment count—from major milestones to her kids’ weekly soccer games. “When I was diagnosed, I didn’t think I would see my daughter start kindergarten,” she says. “She’s now in Grade 3, so that’s wonderful.” 

Navigating information overload

While medical jargon can be intimidating and you’re likely to have a lot on your mind, Simmons stresses the importance of confirming the details of your diagnosis. “What was said? What did you hear? Is there anything that you can take away, like a pathology or imaging report?” Also, there’s no such thing as asking a silly question. “The only silly questions are the ones you didn’t ask,” says Simmons. “If there’s something that’s important to you, it’s important for your health-care practitioner to answer.”

Doing your own research, wisely

Updates are happening all the time in the field of cancer research, Simmons explains. Asking your health-care team if there have been any recent advances that would be relevant to your condition, or if any can be expected soon, can help you and your health-care team to have a forward-thinking approach to your care plan. She also suggests asking your oncologist about any clinical trials that may be available to you. Ask your team which online resources they would recommend or trust, and share them with any friends or family who are helping you gather information. For Montgomery, it was her sister, whom she affectionately refers to as her fact-checker. “Having her on my side really helped.”

Communicating openly to make the most of your appointments

Communication is key. “There are a few things you can do before your appointments to ensure that your needs are being heard and addressed,” says Simmons. “Ask yourself, ‘What is the main thing or symptom that’s affecting me right now, and what is the main issue impacting my quality of life?’ Then communicate this to your team.”

Engaging meaningfully and being proactive can also lead to better care. Upon being diagnosed with mBC, Montgomery made sure to inquire about next steps. “Having those conversations is tough because you’re scared of the answer, but it’s important so you can be prepared to know what comes next.”

These days, Montgomery feels 100 per cent more confident and empowered visiting her oncologist compared with those initial appointments in her journey. Bringing her own research helps with that, she says. Likewise, Simmons encourages patients to be open about recommendations from experts, friends and family to ensure holistic well-being—i.e., mental and physical well-being. “We’re all here to help you and work together,” she says. “Everyone’s on the same side—yours.” 

Trusting your instinct

At the end of the day, you know your body best. When Montgomery’s initial ultrasound came back concerning, she was told the wait at her local cancer clinic could take more than a month. Unhappy with this, she contacted a rapid assessment clinic, where she underwent testing and had a care plan put in place, all before she would have had her initial biopsy done locally. “You are your own best advocate,” she says. “If something feels off to you, you’re usually right.”

Looking to make the most of moments that are important to you or your loved ones? Visit MaketheMost.ca to learn more from those in the mBC community, as well as to access mBC resources, including the Most Moments checklist.

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