Pancreatic cancer doesn’t discriminate, and Canada’s healthcare system shouldn’t either.

As a family, we know families from smaller provinces hit barriers at every turn, from accessing crucial tools like somatic testing to joining clinical trials that improve outcomes.

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Heather Cutler Foundation profile image Heather Cutler Foundation

The Importance of Second Opinions

Whether it confirms your current path, suggests new treatments, or even different medical institutions, a second opinion can be crucial. It’s an opportunity to re-evaluate your diagnosis and treatment plan.

A mother, daughter and staff member of Johns Hopkins stand in a room decorated with colourful framed artworks on the wall.
Heather and her daughter, Bethany, photographed with their care team at the Sidney Kimmel Comprehensive Cancer Centre in Baltimore, Maryland. Copyright © The Heather Cutler Foundation.

In the complex landscape of healthcare, second opinions are an invaluable tool for confirming that you are receiving the best possible care. This is especially true when seeking opinions outside your local healthcare region, as the variability in recommendations can be significant.

In 2016, research from Johns Hopkins—a leading institution in pancreatic cancer—demonstrated that patients who sought second opinions had higher survival rates. This underscores the value of exploring multiple medical perspectives.

Our experience clearly highlighted this variability. Throughout the two-year journey with my mom, we consulted oncologists in Canada and the United States, receiving different recommendations that underscored the importance of consulting multiple experts.

At Princess Margaret Hospital in Toronto, the oncologist reviewed the treatment plan we were following in Newfoundland and confirmed its validity. He expressed confidence in the current approach and advised against pursuing clinical trials, suggesting that they might not offer additional benefits and could introduce complications given the “limited time my mom had left.”

In contrast, our consultation at Johns Hopkins in Baltimore provided a completely different perspective. Dr. Alex Daniel Laheru, a renowned specialist in pancreatic cancer, recommended the KrasG12D trial as a potentially beneficial option.

This recommendation highlighted a more proactive approach involving clinical trials, which was not emphasized in the Canadian treatment plan. However, even when a doctor recommends participation in a clinical trial, as Dr. Laheru did, it doesn’t necessarily mean patients can easily participate.

Particularly when trials are located in the United States, logistical challenges, financial costs, and travel constraints can make it difficult for patients, especially those from other countries, to access these opportunities. It’s a reality that underscores the disparity in access to cutting-edge treatments.

Research has consistently shown that patients participating in clinical trials often have better outcomes compared to those who receive standard treatments alone.

A study published in the Journal of Clinical Oncology found that clinical trial participants had a 13% higher survival rate than non-participants, largely due to access to cutting-edge therapies and more rigorous monitoring. However, despite these findings, Canada has lagged in both clinical trial participation and availability.

The disparity in medical opinions and access to trials raises important questions about the broader healthcare system. In Canada, there can be a reluctance among oncologists to integrate clinical trials into standard treatment protocols, especially when they require travel.

This reluctance, coupled with limited availability of trials within the country, presents a significant barrier. For patients in regions like Newfoundland, this can be a hurdle to accessing the latest treatments, potentially contributing to slower improvements in survival rates.

Even though we now have studies demonstrating the benefits of clinical trials, Canada still faces challenges in increasing participation rates and trial availability. This gap can leave patients without access to potentially life-saving treatments and innovative therapies.

Today, it is common for patients to seek second opinions to explore all possible treatment options. Patients have the right to seek second opinions if they are unsatisfied with their current care.

At any point during your treatment, you have the right to seek another opinion—whether it confirms your current path, suggests new treatments, or directs you to different medical institutions. A second opinion can be crucial for re-evaluating your diagnosis and treatment plan.

Oncologists should always be open to having another set of eyes on your condition. If they are not, it may be a sign that you need to find a different oncologist.

We were fortunate to be under the care of Dr. Dawn Armstrong at Eastern Health’s Bliss Murphy Cancer Centre, whose dedication and excellent bedside manner made a significant difference. She was receptive to our feedback and encouraged us to seek second opinions.

At Johns Hopkins, the approach was notably thorough. Dr. Laheru and his team emphasized the importance of genetic and somatic testing from the start. They meticulously reviewed my mom’s medical imaging and explained her current status. Re-testing resulted in discovering she had a high Tumour Mutational Burden, making her a key candidate for the immunotherapy, Keytruda.

When local doctors were ready to concede due to her advanced stage, Dr. Laheru questioned whether the fluid accumulation (ascites) could be due to an obstruction rather than a more severe prognosis. This level of detailed care reassured us that we had explored every possible avenue for her treatment, providing some comfort even beyond her passing.

Follow up everywhere, with everything and everyone

It's unfortunate, but you can't expect others to prioritize your health more than you do. We found that many delays were reduced when we proactively followed up on everything, as most delays were clerical.

For example, when seeking second opinions, we went from just dropping off a request to also sending an email confirming the drop-off date and asking to be notified when it was ready for pickup.

We would follow up on any emails after a couple of days. Being polite and reasonable, you won't be penalized for asking. This is your battle, and you need the best chances going into this fight.

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When requesting medical images from the hospital, they are usually copied to a disc in DICOM format. While your doctor can request imaging, we found it faster to do it ourselves. Consider using an external hard drive to back up your images. Larger hospitals often allow you to upload these images directly from the disc via online tools, as they are too large to send by email.
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If you find yourself submitting multiple requests for medical records and imaging to keep up with second appointments, use an app like Docusign to pre-fill all other information and signature so you only need to fill in what you’re requesting each time.

MyHealthNL by NL Health Services

Until just this year, picking up medical records (especially imaging) was a giant pain in the behind. To be fair, until we review whether or not the app or desktop platform supports exporting DICOM images then the app launch may not be doing a lot for cancer patients at the moment, but we’ll be sure to personally review its functions and monitor for further updates.

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Regardless, it represents a more than welcome step in the right direction for Newfoundland which has traditionally lagged behind larger provinces in Canada in terms of the availability of government services available digitally.

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UPDATE: As of 2024, NL Health Services has launched “MyHealthNL” — a mobile app that pairs with the online platform aimed at improving access to medical records, prescriptions, tests and lab reports and more.

When is the best time to seek a second opinion?

While no one can tell you when the “right” time is for you, research indicates that seeking a second opinion is often beneficial at several key points in your cancer journey. These include when you first receive a diagnosis, before starting a new treatment plan, when considering participation in a clinical trial, or when faced with complex treatment decisions. Getting a second opinion can provide additional insights, help confirm your diagnosis, and potentially offer alternative treatment options.

What if my Oncologist doesn’t support seeking a second opinion?

This is where self-advocacy plays a crucial role in cancer care, especially when it comes to seeking a second opinion. If your oncologist doesn’t support it, it can feel intimidating to push back, but remember that this is your health, your body, and your journey. Self-advocacy doesn’t mean you distrust your current oncologist; rather, it means you’re taking control of your care to ensure that all possible options are explored.

Second opinions can open doors to different perspectives, including access to cutting-edge treatments or clinical trials that your initial doctor might not have considered. For those who feel hesitant about advocating for themselves, it’s important to understand that asking for a second opinion isn’t about offending your doctor—it’s about feeling confident and empowered in the decisions you’re making. In fact, many patients who seek second opinions find reassurance in confirming their current treatment plan or discover new opportunities that lead to better outcomes.

Heather Cutler Foundation profile image Heather Cutler Foundation
Team Heather is Canada’s newest advocacy publication for people living with Pancreatic Cancer offering up-to-date guidelines, access to supports and more.