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.
Everyone, Everywhere, Everything— Every. Time.
Too many times, my mom—more patient than most—would say, “Let’s just give them the weekend to do something or to get the test results or documentation back.” But when the weekend passed, Monday would arrive, and we’d hear either that they’d forgotten, they’d never received the request, or that someone else hadn’t sent the necessary correspondence. This happened repeatedly, and we eventually grew frustrated with it.
Here’s what we learned: nobody else is going to prioritize your health, or your loved one’s health, the way you will. To them, you may just be another number or name in the system, and that’s okay—accepting this reality is the first step to taking control. Once you accept it, you can approach the process methodically, using what we call the 4E Method: Everyone, Everywhere, Everything—Every. Time.
This method is about eliminating assumptions and ensuring that nothing falls through the cracks. It means you don’t “trust” that something has been done—you confirm it. Whether it’s through a call, an email, or another method of contact, you ensure that both parties have a clear understanding of what is needed, when you can expect it, and that there is an agreement in place. You confirm the timeframe, and if that timeframe is exceeded, you follow up because that is not okay.
For example, let’s say you put in a request for medical imaging. At the desk, they tell you it will be ready within two days once authorized by your oncologist, and they’ll call you when it’s ready. In this situation, you don’t just trust that the desk staff will handle it. Instead, you send an email politely stating the date and time you spoke to the staff, include the person’s name if possible, and recap what they told you. You might write something like, “I just wanted to confirm that you have received the request for medical imaging, and that it will be authorized by my oncologist. I understand it will be ready within two days, and I look forward to hearing from you once it’s ready. Please let me know if there’s anything further I need to provide.”
This simple step ensures there is no ambiguity, no opportunity for miscommunication, and no chance for someone to claim they never received the request or forgot to act on it. It’s not about being distrustful—it’s about understanding that people are busy, things can get forgotten, and a polite reminder goes a long way in keeping things on track.
Using the 4E Method helps you take control. It keeps emotions out of the equation and ensures your interactions are clear, professional, and focused. Being organized and assertive isn’t about being rude or demanding—it’s about being effective. It may be uncomfortable at first, especially if you’re shy or introverted, but over time, you’ll see how much smoother things become when you follow up.
In this fight, delays caused by someone else’s lack of diligence are unacceptable. By being proactive, you can avoid unnecessary frustrations and ensure you or your loved one have the best possible chance.
Everyone, Everywhere, Everything—Every. Time.
Get Involved: Petition e-5186 – A Son’s Fight for Pancreatic Cancer Reform in Canada (05:14) On December 5, Christopher Cutler, on behalf of The Heather Cutler Foundation, submitted e-Petition 5186 to the House of Commons. Your signature would be greatly appreciated.
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.
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.
Why are second opinions crucial in healthcare?
Second opinions are so important in healthcare because they help confirm that patients are receiving the most effective treatment. Research from Johns Hopkins in 2016 found that patients who sought second opinions had higher survival rates, emphasizing the value of exploring multiple medical perspectives.
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.
How can second opinions vary between healthcare regions?
Second opinions in pancreatic cancer care can differ widely depending on the country, province, region, or even the doctor providing the opinion. Different countries have unique regulations and access to clinical trials, while provinces and regions may have varying healthcare resources and expertise. Heather Cutler and her daughter received conflicting recommendations from oncologists in Canada and the United States, demonstrating the value of consulting multiple experts to uncover all possible treatment options for this challenging disease.
What was the difference in approach between Canadian and US oncologists in Heather’s case?
In Heather’s case, the oncologist at Princess Margaret Hospital in Toronto supported the current treatment plan and advised against clinical trials. However, Dr. Alex Daniel Laheru at Johns Hopkins in Baltimore recommended the KrasG12D clinical trial, showcasing a proactive approach that considered experimental treatments to potentially improve her outcome. Trials targeting KRAS have continued to demonstrate potential benefit for patients harbouring the mutation.
How do clinical trials impact pancreatic cancer treatment outcomes?
Clinical trials can significantly improve outcomes for people with pancreatic cancer by providing access to innovative therapies and advanced research. However, it is important to recognize that outcomes can vary widely, just as statistics cannot predict how one individual will respond to treatment. For instance, a study in the Journal of Clinical Oncology found that participants in clinical trials had a 13% higher survival rate on average compared to those receiving standard treatments. While this statistic highlights the potential benefits of trials, each patient’s response is unique. Clinical trials offer hope and options, especially for a disease like pancreatic cancer where treatment pathways are often limited, but their effectiveness will depend on the specific case.
What challenges do Canadian patients face in accessing clinical trials for pancreatic cancer?
Canadians with pancreatic cancer, particularly those in smaller provinces like Newfoundland, face barriers such as limited availability of trials, reluctance from local oncologists to recommend them, and logistical and financial difficulties when trials are located in the United States. These challenges can delay or completely prevent access to life-extending treatments, especially for aggressive cancers like pancreatic cancer.
What is the 4E Method?
The 4E Method, created by the Cutler family, is a framework designed to improve communication and efficiency between patients, caregivers, and healthcare providers in pancreatic cancer care. It focuses on eliminating assumptions, confirming all actions and agreements, ensuring nothing is overlooked, and consistently following up. This proactive approach is especially vital for pancreatic cancer, where delays in treatment or miscommunication can impact outcomes.
How can genetic and somatic testing impact pancreatic cancer treatment?
Genetic and somatic testing are critical in pancreatic cancer care because they help identify personalized treatment options and determine eligibility for clinical trials focused on precision medicine. In Heather’s case, testing at Johns Hopkins revealed she had a high Tumour Mutational Burden, making her eligible for immunotherapy with Keytruda. These tests can uncover targeted therapies or clinical trials that may not otherwise be considered.
How does patient advocacy improve pancreatic cancer outcomes?
Patient advocacy improves pancreatic cancer outcomes by empowering individuals to take an active role in their care. Seeking second opinions, exploring every available treatment option, maintaining clear communication with healthcare providers, and following up on test results and treatment plans ensure that patients receive the most comprehensive care possible. Advocacy is so important in a disease as aggressive and complex as pancreatic cancer.
How can patients and caregivers improve communication with healthcare providers during treatment?
Patients and caregivers can improve communication by documenting all interactions, sending follow-up emails to confirm important discussions, holding providers accountable to agreed timelines, and using the 4E Method to ensure clarity and accountability. Clear and consistent communication is vital in pancreatic cancer care, where timely decisions and efficient coordination can make a significant difference.
