Pancreatic Cancer Advocacy in Newfoundland: The Power of Big Voices in Small Towns

If you or a loved one has just been diagnosed with pancreatic cancer, you’re likely feeling overwhelmed and helpless. But you are not powerless—far from it. We’ve been in your shoes.

For nearly two years, our mother, Heather exhibited extraordinary strength and resilience as she battled this illness, returning to the very hospital where she had devoted thirty-five years of her life as a registered nurse to receive chemotherapy every two weeks.

Beyond her career, she was a nurturing mother, a devoted wife, an affectionate daughter, and a cherished friend, making it her mission to support others. In line with her spirit, we felt it was essential to share her experience to assist those in similar circumstances. It’s what she would have wanted. Her journey underscores the importance of advocacy in improving patient care, educating families, and fostering research efforts to enhance understanding and treatment options. She was a true patient advocate, always striving to make a difference.

Our family had no significant health issues prior; both Mom’s parents were thriving in their nineties, and my mother rarely suffered from ailments (my grandmother insists she can’t even recall Mom catching a cold).

She lacked the common risk factors associated with pancreatic cancer. She was a non-smoker, didn’t have diabetes, a family history of cancer, or jaundice, and enjoyed a healthy diet. The only possible risk factor was her age—63.

So, when Mom called us into the doctor’s office two summers ago and our family doctor revealed spots on her pancreas and liver, our entire world came crashing down. The sound of my mother’s fearful whimper still echoes in my mind, etched as a memory I don’t know that I can ever forget. The diagnosis was Stage IV pancreatic cancer with liver metastasis. There were no tests or early detection that could have alerted her before she already had already progressed to metastatic disease.

Setting aside our longstanding sibling rivalry, my sister and I committed ourselves over the next two years to grasp the latest standards of care and treatment options for pancreatic cancer. We spent countless hours sharing updates—anything from medical studies, promising clinical data, advancements in treatment options, and drug approvals—all while evaluating their relevance to our mother’s care in Newfoundland.

Advocacy organizations like PANCAN highlighted the value of being treated at high-volume cancer centers. Our mother was receiving her treatment at Bliss Murphy Cancer Centre in St. John’s, Newfoundland and Labrador, through Eastern Health. Therefore, our goal was clear: we would fight for her to receive the same caliber of care that larger centers could provide.

Our advocacy journey commenced at Bliss Murphy, leading us to pursue two second opinions via Telehealth at the Princess Margaret Cancer Centre in Toronto and eventually taking us to Johns Hopkins, one of the world’s leading pancreatic cancer institutions.

We encountered many different phases—moments of tears over missed opportunities and inevitable setbacks—but the flicker of hope never faded. We compiled our gleaned insights into this guide, aiming to support others in holding onto hope. Remember, this is your battle. Healthcare systems are overwhelmed and understaffed, and even the best healthcare workers can make mistakes. There are hundreds of others living with cancer actively receiving treatment, so oncologists are busy. Unfortunately, this can affect the quality of care you receive.

Smaller provinces, such as Newfoundland, often lack healthcare resources and experience longer wait times, but accepting this reality can empower you to advocate for yourself. (National Center for Biotechnology Information, 2023). Multiple studies have verified that patients receiving care at high-volume cancer centre’s experience improved overall survival and lower mortality rates compared to those treated at low-volume centre’s, even when facing more advanced cancer. (Mishra et al., 2021).

If high-volume centers aren’t nearby, advocating for your needs becomes essential. The aim here is to leverage your voice to align your treatment with that available in larger centre’s across Canada. You don’t need to be a healthcare professional to assume an active role in your own care.

Mom often expressed her gratitude for having us by her side. We helped in any way we could. When you advocate for a parent it’s impossible for it to be deeply personal. All our family members huddled around my Mom and went out of their way to support her in any way possible.

Despite being a nurse for thirty-five years at Eastern Health, she always struggled with the overwhelming amount of information. Even while undergoing chemotherapy, her ability to retain details seemed hindered; nevertheless, she miraculously managed to be alert for her favourite TV show, Jeopardy, at 8:30.

What is Pancreatic Cancer? - Team Heather

When cells in the pancreas start growing uncontrollably, they form a tumour, which can potentially spread to other parts of the body if not caught early.

Team HeatherTeam Heather

It shakes me to my very core to announce my Mother’s passing on May 5, 2024. Losing her to this life-changing disease has been the most difficult challenge I have ever faced in my life; it's given me a profound awareness of how precious and unpredictable life can be—

It’s been almost two months since I last saw you, Mom, and my world will never look the same. Things were so good for so long that there were times we all forgot it was still there.

Lastly, for new caregivers struggling to find the best way to help, you’re already helping. We all contribute in different ways. My sister and father were hands-on, especially during Mom’s final days.

The term “Caregiver” may sound foreign at first, but when your loved one genuinely feels awful, you’ll quickly find yourself caring.

Chemo can knock you out, make you feel unpleasant, and change family dynamics. You’ll want to keep things familiar for your loved one, but remember that being there for them is the most important thing.

We won’t lie - your life will change quickly, no matter how you approach this battle as a patient or caregiver. But know that Team Heather is with you and cheering you on every step of the way.

Navigating Your Pancreatic Cancer Diagnosis

Get Informed About The Disease, Specialists and Oncologists. Getting familiar with your care team.

Disregard the statistics and the bleak prognosis. You are not a statistic. According to statistics, my Mother should not have celebrated another Christmas together, let alone two. But we did. The landscape of Pancreatic Cancer treatment is advancing quickly with researchers scrambling to meet this urgent need. In the two years we’ve journeyed with my Mom, the survival rate has risen by 2%. If it continues, we will be looking at vastly improved outcomes in the coming years.

Two years ago, nobody in our family had any lasting experience navigating the Healthcare system, at least not as a patient. By the end, we were more than comfortable holding others accountable, being polite yet firm, and letting our Mom focus on being the fighter while we took care of the small stuff.

There are going to be people who either willingly or unwillingly act in ways that can cause delays in your treatments or dismiss your concerns. There will be those who view your prognosis as a period at the end of a sentence. These people will never be the change that Pancreatic Cancer needs to align outcomes with other, more survivable cancers.

Your relationship with those responsible for your treatment should be built like any healthy relationship. On trust and mutual respect. They should not be a part of it if they are not inspiring hope and complimenting your journey.

So let’s get into it.

This page is about advocacy in a healthcare system that, anywhere in Canada, is overwhelmed right now.

While there are no words we can say to patch up that sinking ship, we‘re going to highlight every turn, blind corner and speed bump of Heather’s journey with Pancreatic Cancer, so you can reduce delays as much as possible and be more aware of the treatment options that exist.

Team Heather - Glossary of Pancreatic Cancer Terminology

Explore key pancreatic cancer terms and definitions to better understand diagnosis, treatment, and care with our easy to understand glossary.

Team HeatherTeam Heather

Get Informed About Pancreatic Cancer Treatment

We’ve put together a list of the most crucial conversations you need to have right away. But it’s also helpful to have a basic understanding of Pancreatic Cancer.b

We have lots of resources on symptoms, stages and treatment options, as well as a growing database of educational resources and supports. Clinical research plays a vital role in advancing treatment options for pancreatic cancer, and participating in clinical trials can significantly improve patient outcomes.

Specialists and Oncologists: Build A Team That Supports You

Let’s be honest for a moment. From the beginning, you may not have the choice of who your oncologist is. However, this doesn’t mean you should blindly follow someone who doesn’t support you and your journey. Healthcare professionals play a crucial role in supporting people living with Pancreatic Cancer, and clear communication with your healthcare team is essential.

You deserve the best care possible - this may mean seeking referrals from trusted sources, attending second opinions through Telehealth or even considering travel to access experienced specialists outside of the province. If the treatment isn’t offered in your province, provincial health plans will often cover your trip.

Local oncologists in your province may be the first point of contact, but they don‘t always have to be your last. Adopting this approach from the beginning will strengthen your advocacy efforts quickly.

Do not settle for anything less.

Remember, even within smaller provinces, there are often hidden gems in healthcare. My Mother would attest to that with her care from Oncologist Dawn Armstrong. Align yourself with a dedicated team committed to your well-being and familiar with the latest treatments.

However, saying that no rock was left unturned would be unfair. Looking back on our emails throughout my Mom’s illness, it still bothers me that three months before my mother’s passing, acting on recommendations from Johns Hopkins regarding the recently approved NALFIRINOX, my mother and I had contacted Newfoundlands Medical Care Plan (MCP) regarding coverage for the drug.

We were advised a pre-approval letter would have to be sent to the provincial medical director. I sent that request to the oncologist, who said she would investigate it. The drug was not spoken about until a month and a half later when she moved to stop chemo for my Mom, and when I brought it up again at that appointment, it was like I had mentioned it for the first time.

It would take another week for them for her to look into the drug and for the specialized drug navigator at Bliss Murphy to investigate the availability of the drug in Canada. He never did return my call. During this time, my Mom‘s health went down a path that wasn’t reversible.

Reach out to a Cancer Patient Navigator to get oriented

According to Eastern Health, nurse navigators are specialized nurses working exclusively with cancer patients. A patient advocate plays a crucial role in supporting and improving quality of life by educating patients and families, supporting clinical decision-making, and fighting for better healthcare access and resources. They work with your Oncologist, doctor, surgeon, and family to “provide you with education and knowledge“ to make the best treatment decisions. Nurse navigators also help coordinate appointments.

The difficulty with Eastern Health, as with many smaller healthcare systems, is that education is not usually current. If you’re looking for guidance about chemotherapy regimens, side effects, how to talk to your family about your diagnosis, or scheduling follow up appointments they can help.

But somatic testing, pancreatic enzymes, nerve blocks, or the availability of a third chemo option that is now an approved standard of care in the United States?

That didn’t come from a cancer navigator or any member of our mother’s care team until these options were uncovered through nightly research by my sister and me.

Understanding Your Options

Genetic and Somatic Testing, Chemotherapy Regimens, Surgical Interventions and Immunotherapy.

Understanding the staging of pancreatic cancer is crucial. Is the cancer resectable or unresectable? Can surgery be performed? What’s the treatment plan, and when does it start?

Once a treatment plan is decided, don't allow delays in starting chemotherapy. Immediate treatment is essential, as pancreatic cancer can progress rapidly. For patients in smaller provinces like our home province of Newfoundland and Labrador, where specialists in any disease, let alone those from high-volume cancer centres who handle a high volume of Pancreatic Cancer cases, are slim to none) connecting with specialized cancer centres in bigger cities like Toronto or Vancouver for second opinions can be invaluable. Proactively inquiring about referrals to these centres ensures you receive the best care possible.

Early exploration of treatment options is vital for an effective strategy against pancreatic cancer. Key treatments include surgery, chemotherapy, radiation, and emerging therapies like immunotherapy and targeted drugs.

Genetic testing reveals inherited mutations, such as BRCA, which can dictate more effective treatment plans.

Understand the Role of Genetic and Somatic Testing

Pancreatic Cancer Action Network (PANCAN) might have trademarked the term, but for good reason. When my sister and I first started navigating the complex world of Pancreatic Cancer treatment, two terms that kept coming up online from US Advocacy organizations were somatic and germline genetic) testing. Clinical research has shown the importance of these tests in developing personalized treatment plans.

At first, it sounded like more medical jargon thrown into the conversation. But as we read through more forums and research articles, we quickly realized how crucial they could be to my Mom’s treatment.

Somatic Testing

Somatic testing involves examining the genetic mutations in the tumour itself rather than your inherited genes. This test can reveal specific genetic changes driving the cancer's growth. Knowing these details can guide your treatment in powerful ways. For instance, specific mutations may respond better to particular chemotherapy drugs or targeted therapies, including immunotherapies like Keytruda. Think of it as personalizing your battle plan against cancer.

Here's why somatic testing is particularly beneficial for pancreatic cancer: 

• Targeted Therapy: Some mutations might make you eligible for targeted therapies, which can be more effective and less toxic than traditional chemotherapy.
• Clinical Trials: Understanding the genetic makeup of your tumour might open doors to clinical trials that you wouldn't otherwise qualify for. These trials can provide access to cutting-edge treatments unavailable to the public.
• Prognostic Information: The genetic details can offer insights into your cancer's behaviour and how aggressive it might be. This information helps your healthcare team tailor more precise and effective treatments.

In smaller Canadian provinces, healthcare resources may be limited, and oncologists might be hesitant to suggest somatic testing due to costs and a lack of experience with actionable mutations leading to treatment changes.

However, discovering actionable mutations can offer additional treatments beyond the standard treatments, potentially improving outcomes significantly. Despite the anxiety and anticipation of waiting for results, taking this extra step is crucial. Somatic testing provides insights into how the cancer has mutated in your body, not just inherited genetic mutations. It’s worth exploring every option in your fight against the disease.

Navigating test results and medical jargon can be exhausting, but remember that you are your best advocate. Ask questions and seek clarification from your healthcare team. Clinical trials were considered for my Mom's KRAS G12D mutation because of promising developments and published results. Sharing results with clinical trial matching services like PANCAN is essential, as it customizes the search based on your biomarkers. Bringing these results to second opinions is also important. Studies have shown that patients with actionable mutations have improved overall survival (The Lancet Oncology, 2020).

The sooner you get these results, the sooner you can identify any actionable mutations. While treatments for current mutations are limited, they do exist, and clinical trials may offer additional options, with potential FDA-approved treatments in the future. Any approved treatment will have started in a clinical trial.

Genetic Testing

Also commonly referred to as germline testing, Genetic testing is essential for pancreatic cancer as it can reveal mutations like BRCA that guide treatment decisions. People with BRCA mutations might respond better to certain chemotherapies, like platinum-based drugs. (Canadian Cancer Society, 2024).

Other mutations, like PALB2, ATM, and CDKN2A, can also influence treatment choices. Genetic testing can also identify hereditary cancer syndromes, helping the families of those with pancreatic cancer manage cancer risks.

Comparing Somatic and Genetic Testing

Chemotherapy Regimens

Chemotherapy will be the standard approach for many in treating pancreatic cancer, often combining drugs to maximize efficacy. Different chemotherapy regimens aim to improve patient outcomes by enhancing the effectiveness of treatment and overall well-being of people living with pancreatic cancer.

1. FOLFIRINOX: Combines four drugs—fluorouracil, leucovorin, irinotecan, and oxaliplatin—for patients with good performance status.
2. Gemcitabine: Administered alone or with other agents like Abraxane, suitable for those unable to tolerate aggressive treatment.
3. Combination Therapy: Utilizes multiple chemotherapy agents for synergistic effects and potentially better outcomes.
4. Neo-adjuvant Therapy: Given pre-surgery to shrink tumors and improve surgical success.
5. Adjuvant Therapy: Used post-surgery to eliminate microscopic residual disease

Surgical Interventions

Whipple Surgery

Surgical interventions may offer the best hope for curative treatment in eligible patients. A successful “Whipple” can significantly extend survival time. 

The Whipple procedure, or pancreaticoduodenectomy, is an operation that involves removing the head of the pancreas, part of the small intestine, the gallbladder, and the bile duct and then reconnecting the remaining organs.

Due to the complexity and potential risks involved, seeking care at specialized centres with experienced surgical teams is vital, which may mean travelling out of the province.

This may be the time to consider second opinions to ensure surgery is feasible and the timing is optimal for the best possible outcomes. Some surgeons may decline to operate, while others may feel they can complete your operation.

PANCAN, one of the most prominent advocacy organizations for Pancreatic Cancer worldwide, estimates that anywhere between 30-50% of patients eligible for surgery are told they are ineligible.

Advances are being made in the field of Pancreatic Cancer surgery, and we would advise seeking a second opinion from a more extensive cancer Center as our Mother did.

Celiax Plexus Nerve Block

The celiac plexus nerve block targets the nerve network that transmits pain signals from the pancreas and surrounding organs. By blocking these signals, people living with Pancreatic Cancer can experience substantial pain relief, which is often more effective than oral medications alone. It may also reduce the need for high doses of opioids.

One thing my Mother was adamant about was not taking more pain medications than she had to. When the palliative care doctor would call and ask how her pain was, he was astonished when my Mom would insist that she found more relief from everyday Tylenol.

My sister and I became aware of the procedure about a year into my Mom’s journey. We discussed it with our Oncologist, who had to do a little digging about who exactly performed the procedure in Newfoundland (again, small-town challenges, not her fault but of the system). The method is quick and painless, and my Mother agreed to do it after some hesitation.

Unfortunately, after she went in, they realized the tumour had wholly enveloped, and there wasn’t a clear path through to the nerves. For that reason, the surgeon had to abort. This was another letdown and one that we wouldn’t want others living with Pancreatic Cancer to experience.

Therefore, it’s crucial to have the conversation with your Oncologist early so they can perform the procedure (if it will benefit you) when the window is there.

Immunotherapy

Immunotherapy has emerged as a promising frontier in pancreatic cancer treatment in recent years. Previously, ”cold tumours” like Pancreatic Cancer were thought to be somewhat immune to immunotherapy, but progress is happening. For those with high Tumor Mutational Burden (TMB) like my Mom, Keytruda exists as one of the treatment options.

Compared to standard treatments, such as chemotherapy and radiation, immunotherapy leverages the body's immune system to target and destroy cancer cells. This approach aims to enhance the body’s natural defences to combat the disease better.

Early clinical trial results show positive outcomes, although more research is needed to understand its potential benefits and limitations fully. Immunotherapy treatments like immune checkpoint inhibitors, CAR T-cell therapy, and cancer vaccines are at the forefront of these innovations. Patients with specific genetic markers could respond particularly well to these treatments.

However, access to immunotherapy can be limited, especially in smaller provinces in the Atlantic areas like Newfoundland. Although it was too late in Mom‘s disease for her to try Keytruda when we discovered her TMB, we heard many stories of Newfoundlanders making their way to a more prominent cancer center in Toronto for immunotherapy.

Optimizing Nutrition and Quality of Life

Pancreatic Enzymes, Palliative Care, Managing life between treatment and the Role of Caregivers.

Connect with Support and Advocacy Organizations

There are two national organizations for Pancreatic Cancer in Canada: Craig’s Cause and Pancreatic Cancer Canada. Both offer a range of supports, which we’ve highlighted below, but Pancreatic Cancer Canada seems to be more focused on research initiatives, social change, and social media than patient-focused programs.

In Particular, weekly meetings offered through Craig’s Cause called “Peers with Pancreatic Cancer” give you and your family a chance to join an ongoing discussion with dozens of others in the same boat as you, hear about their treatments, learn about ongoing developments and research, clinical trials, and more to gain an advantage or at very least evaluate your satisfaction with your current treatment approach.

Craig's Cause

• Craig’s Cause Pancreatic Cancer Society has weekly support groups Peers With Pancreatic Cancer™ that take place over Zoom, facilitated by Erin Ranger with patients from Canada and the United States.
• Patient Financial Support Grants™ that provide financial aid to patients during their treatment periods.
• Monthly support groups Support4Caregivers™ that connects you with other Caregivers to Pancreatic Cancer patients who understand what you’re going through.
• Ask a Doctor™ Service which helps with complex or specific treatment inquiries pertaining to the type of cancer you have, and can help with obtaining a second-opinion or answering your questions about clinical trials.
• A Pancreatic Cancer Specialists referral list which highlights specific institutions in Canada that specialize in treating Pancreatic Cancer.
• A Pancreatic Cancer Clinical Trial Finder™ which upon completion of a short questionnaire can help you match to clinical trials. We cannot stress the importance of Genetic And Somatic testing at the time of diagnosis not only for treatment guidance, but because more and more clinical trials are using biomarkers in their exclusion/inclusion criteria.

Pancreatic Cancer Canada

• Partnership with Wellspring Peer Support and Monthly Support Groups pairs patients with a one-on-one support volunteer who can call you at home to discuss ongoing issues or just lending a ear.
• Ask an expert service which allows patients to consult with an expert between doctors visits on treatment specific questions, unable to provide a second opinion.

Managing life between treatments

Managing life during treatments involves balancing medical appointments and everyday activities. Staying organized, using planners, and pre-arranging support can significantly reduce stress and maximize the quality of life.

Lean on community resources and establish routines that provide structure without being overwhelming. Hold tight to those simple pleasures, like walks and movie nights with family or friends that can offer invaluable emotional boosts.

The Role of Caregivers: Lean on Them

Caregivers play a critical role in the journey of pancreatic cancer patients by providing various forms of support that are tailored to whatever that person needs.

• Emotional Support: Offering a listening ear and comforting presence.
• Logistical Help: Managing appointments, transportation, and daily tasks.
• Medical Advocacy: Tracking symptoms, medications, and communicating with healthcare providers.
• Practical Assistance: Helping with meal preparation and household chores.
• Financial Management: Handling medical bills and insurance claims.

Their diverse responsibilities extend beyond primary care to include emotional and logistical components. You might find yourself doing things you’ve never been asked to do.

Effective caregiving often requires resilience, organization, and continuous learning. But you’ll get the hang of it and know it’s more than okay to feel frustrated sometimes.

Professional support groups, such as Craig’s Cause and its Support for Caregivers program, can provide caregivers with valuable resources and emotional support.

Ask About Pancreatic Enzymes

Studies have shown that Pancreatic Enzymes increase overall survival with virtually no side effects. Anyone with Pancreatic Cancer has some degree of decreased enzyme production which can affect how your body absorbs nutrients, which leads to weight loss and fatigue.

Pancreatic Enzymes, also referred to as “PERT”, are usually sourced from the Pancreas of pigs. It’s just a matter of figuring out what dose works to restore your normal production of enzymes so you can get the most out of each meal. Talk to your doctor as soon as possible about starting them. Furthermore, Craigs Cause offers a PERT calculator to help you calculate optimal dosage based on the foods your eating.

Talk About Palliative Care Early

Palliative care is not end-of-life care. Let’s get that straight. It’s about improving your quality of life. And my Mother had fifteen excellent months that she lived life up. You need a team around you that will counter your pain before it becomes an issue. 

Palliative care is about enhancing quality of life, not just end-of-life care. My mother enjoyed fifteen great months thanks to proactive pain management. Our province's Paramedics Providing Palliative Care Program was invaluable, allowing us to avoid long ER waits by treating issues at home.

Whether managing vomiting or dehydration, the paramedics provided excellent care. We learned to be proactive, working closely with the Palliative Care Team to address issues before they worsened. This involvement in decision-making was empowering.

Planning ahead for Clinical Trials

Clinical Trial Matching Tools, Self-referral practices and the Importance of Second Opinions.

Ensure Somatic and Genetic testing through a reputable company as soon as possible. Biomarkers will determine your eligibility for clinical trials. Most, if not all have strict “inclusion” and “exclusion“ criteria that are becoming more and more focused on biomarkers as the medical industry researches how to attack these vulnerabilities in the cancers makeup.

We also want to acknowledge that matching with trials in Canada might not always be a great option. When we looked at clinical trials in Canada we were told at a second-opinion at Princess Margaret that none of the trials offered at the time would be beneficial to my Mother. If you compare the sheer volume of trials being conducted in Canada versus the United States you‘ll quickly notice the difference between both locations.

That‘s not to say planning to attend a clinical trial in the United States as a Canadian is easy- far from it. First off, Canadian doctors (with the exception of a small subset of doctors that have cross-affiliations with U.S based institutions) cannot refer you to clinical trials outside of Canada.

That means that you need to now either go see an Oncologist in the US, or you need to self-refer to each trial individually and hope that gets you somewhere when in our experience, only around 20-30% of clinical trials we self-referred to even returned our calls or emails despite our mother matching inclusion and exclusion criteria.

We we’re extremely lucky to have both a bomb Aunt that came through big time, and her incredible boss, Irving, Toddy- you guys know who you are and know that you gave us such hope when we thought at times we were about to run out. These huge acts of kindness got Mom into Johns Hopkins in Maryland where she was given not just incredible care, but honestly, a renewed sense of confidence. My Mom used to tear up every single time she would talk about you guys, how humbled she was that you chose to care so much about her. I know she carried that love with her every step of her journey.

The United States has far more trials that are focused on developing drugs that are targeted towards specific bio markers.For instance, at Johns Hopkins, at the first appointment we were already made aware of a soon-to-open trial in Maryland that targeted KRAS G12D which my mothers initial testing had identified.

There are many things to think about when entering a clinical trial in Canada, but even more to consider when entering a trial in the United States. You’ll need to think about accommodations, finances and make sure you’re asking what’s covered by the trial, and what’s not. You’ll need to consider the fact that insurance policies will probably not cover you travelling outside of Canada.

Lastly, as much as we wanted to plan for everything with my Mom’s cancer, you must acknowledge that cancer can be unpredictable and things don’t always go according to plan. In our heads we had three chemo treatment options- if Chemo A failed, we would go to Chemo B. If Chemo B failed too, we would move to Chemo C. Then we would consider Clincial trials. If only things were that simple. This logic doesn’t take in to account how our Mother felt physically after two failed chemo regimens. Her body could not tolerate the suggested immunotherapy, and by that time her “ECGO” or performance status already disqualified her from entry into a clinical trial. Only you can make a decision with your healthcare provider, or sometimes you alone. My mother trusted Chemo because she had a medical background and believed in it’s potential for success. Perhaps clinical trials or immunotherapy wouldn’t have made a difference. She already stuck out twenty long months on the routine chemos with no targeted therapies available to her in a world where she was given three to maximum fifteen months. So much about this journey is unknown, but please do what’s best for you.

Clinical Trial Matching Tools

Since 2016, clinicaltrials.gov, a United States government database, lists trials conducted around the world, making information accessible to the public. This platform can be invaluable tool for Oncologists seeking to pair their patients with cutting-edge treatments specifically suited to their Pancreatic cancer diagnosis.. However, the site can be completely overwhelming for most without a medical background.

Further, it's not just about knowing the trials that exist; it's about understanding how to access them. Self-referral is often necessary, especially since Canadian doctors can't refer patients to international trials. Persistence is key in this endeavour, as trial availability can change rapidly.

Securing a spot in a clinical trial often requires the completion of genetic and somatic testing, which provides the biomarkers needed to match specific trials. Understand the eligibility criteria and dynamically search for trials by repeatedly checking with services like Pancan’s Clinical Trial Finder or MyTomorrows.

It's essential to prepare for logistical challenges, especially if the trial is in the United States. From accommodations to financing, every detail matters.

You don’t really need to waste time navigating the website as there is no shortage of organizations both in Canada and worldwide that will complete this search for you and simply provide you with a list. That being said, it becomes more difficult when you are required to self-refer.

Self-referral Practices

In smaller provinces like Newfoundland, it’s pretty much guaranteed that your options for enrolling in clinical trials will be severely limited. Self-referral to clinical trials is a proactive approach that can maximize your treatment options. If you’re planning on enrolling in a clinical trial based outside of Canada, this will likely be your only choice as Canadian physicians cannot refer to clinical trials located outside of Canada.

Remember that clinical trials are dynamic and new ones are added daily just as quickly as others fill up. A word of advice- don’t put all your eggs in one basket. Inquire relentlessly, reach out to as many as you can and then make a decision based on the ones who respond back. Many don’t. Don‘t take this personally and simply move on to the next. All of the matching services below are or course free to use.

Navigating inclusion/exclusion criteria

Understanding clinical trial criteria can significantly improve your chances of finding suitable options. Inclusion and exclusion criteria, while a necessary framework for clinical trials, can be intimidating to people with no medical background. They ensure that participants have specific characteristics needed to answer the research questions. These strict criteria can be based on age, gender, cancer stage, genetic background, and previous treatments received.

Generally, factors such as overall health status and tumour biomarkers play a crucial role in determining eligibility. For instance, advanced pancreatic cancer treatments often necessitate precise genetic mutations to match with clinical trials.

Creating a comprehensive patient profile that includes your biomarkers, health status, and treatment history will streamline the process of comparing yourself to various trial criteria. Thorough documentation and organized communication can significantly enhance your ability to find the most appropriate and potentially life-saving clinical trials.

Our approach at creating the profile below was to sort through as many of the active clinical trials for Pancreatic Cancer on ClinicalTrials.gov, looking at the most common criteria and filling in the values specific to my Mom so that we could then quickly know if my Mother was eligible for a specific trial. Obviously we are not medical professionals, so bringing your findings for your Oncologist to review is best practice.

We’ll be publishing a tutorial in the coming weeks on how you can complete a profile like the one above for yourself or your loved one. There have been so many advances in artificial intelligence and it’s become more accessible. You can input medical records to programs like ChatGPT and request the radiology findings be sorted into existing criteria values that you specify based on common criteria for clinical trials. On more than one occasion I’ve got great feedback from clinical trial study coordinators whom I’ve communicated with and included the patient profile above in our communication regarding my Mom’s application.

PANCAN's Clinical Trial Finder

Clinical Trials - Pancreatic Cancer Action Network

Discover why better treatment options for patients will only happen through clinical trials and how to find trials near you.

Pancreatic Cancer Action Network

This tool is only available for trials conducted in the United States. If you’re located in Canada, you can find the nearest US city and use its ZIP code to search for trials. You can use this tool to locate trials, but we recommend that you consult with a phone agent who can interpret your somatic and genetic testing results to provide personalized advice. It’s also much better to form a relationship with your Case Manager as PANCAN recommends you repeat a search every two weeks to keep your matches current and make you aware of new trials that might have opened.

MyTomorrows

Contact Us - Patients

Helping patients discover and access treatments

myTomorrows

The website has a clinical trial finder but doesn’t customize the results. Instead, book an appointment with their medical team to discuss your diagnosis and use the resources.

Antidote.me

Clinical Trial Patient Recruitment | Antidote

Learn about clinical trial patient recruitment at Antidote, where we connect volunteers to the right clinical trials through our unique technology and robust partner network.

AntidoteAntidote

Can be used to search trials based in Canada and the United States, aims to simplify results from ClinicalTrials.gov, but does not customize results by biomarkers so can yield an overwhelming amount of trials.

Ancora

Ancora - Find Cancer Clinical Trials

Ancora is a search tool that enables cancer patients to find relevant clinical trials in minutes.

Ancora

Ancora is an additional AI-enhanced search for Clinical Trials that is useful because it will ask you about your genetic mutations and the results of your test to match you to targeted therapies.

The Importance of Second Opinions

Consider your healthcare team as partners in your journey, capable of offering expert perspectives on treatment options. In 2016, Johns Hopkins, a renowned medical institution specializing in Pancreatic Cancer, published findings showing higher survival rates for pancreatic cancer patients receiving second opinions.

Today, it's not uncommon for patients to seek second opinions to explore all possible treatments. Patients have the right to seek second opinions if they are unsatisfied with their current care. At any point during your treatment as many times as you want, anywhere and with any doctor you have the right to seek a different opinion. 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.Oncologist should always be open to you having another set of eyes and ears on your condition, otherwise you’ve landed a bad Oncologist.

We were extremely lucky to be under the care of Oncologist Dawn Armstrong at Eastern Health’s Bliss Murphy Cancer Center who’s dedication to the profession and excellent bedside manner made all the difference. She was at every step more than open to our constant feedback, suggestions and not only was fine with second opinions but encouraged us doing so.

During the course of my Mothers treatment, we sought multiple second opinions from Princess Margaret in Toronto, and Johns Hopkins in Maryland, Baltimore. There was slight to no difference to treatment approach at Princess Margaret, but this confirmation reassured my Mom that nothing different would be done had she been in a bigger hospital like Toronto.

At Johns Hopkins, we saw a real difference. There was a bigger emphasis on the importance of Genetic and Somatic testing from the start. They took the time to pull up my Mom’s medical imaging and explain to her the current status. Dr. Laheru continued to follow her condition and exhausted every avenue when doctors in Newfoundland were satisfied with throwing in the towel because she was Stage IV. When they told her the Ascites meant she was “a very sick woman,” Dr. Laheru questioned if the fluid could rather be due to an obstruction. This attention to detail in the aftermath of our Mom’s passing made us feel that we at least did what we could.

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.

For example, medical scans for second opinions. We went from dropping off a request in a letter box to doing the same, but sending an email immediately afterwards confirming that the request was dropped off at the specific date and requesting that we be notified when it was ready for pickup.

Any emails we sent, we would give it a couple days, and then we would politely follow-up again. You aren’t “stepping on toes” and you won’t be penalized for asking as long as you are polite and reasonable. This is your battle, and you need the best chances going into this fight.

Record and Document

In Canada, you don’t need permission from another party to record your conversations with them. Furthermore, we always had permission from our oncologist to record each time.

My Mom always said, even as a someone with a medical background- there is way too much information coming at you at each appointment that it’s impossible to remember everything that was said. Add chemo brain into the mix and your retention of that information is going to be pretty reduced.

So pop out your phone every appointment and record everything that was said. There are many apps for iPhone that can transcribe audio and sort it into bullet point form so you don’t even have to listen back to the audio unless you want to.

What’s the end goal? You want to approach your oncology appointments like a job interview: prepared, and ready to make the most of your limited time with whom you’re meeting.

This became my sisters and I approach to every single appointment we attended of my Mother’s. I was away for periods studying in Toronto, but I would conference in on Facetime each time.

Prior to the appointment me and my sister would have researched and organized each question into notes that we shared. We would then run them by my Mom prior to the appointment to make sure she didn’t think our questions would step on anyones toes. My Dad was similar in the beginning.

They trusted the local care team enough to let them sit in the passengers seat until we started bringing options to the table to discuss that we’re not proactively brought to us. This family sense of unified advocacy for my Mother grew and intensified as we journeyed along by my Mothers side. When she was hospitalized twice in the last few months, my Mother’s advocacy blossomed.

It’s important to note that self-advocacy does not mean you are stepping on toes or attacking others.

I want to rewind to the second-last hospital stay at the Health Sciences Center. My Mom had been hospitalized for dehydration and another secondary issue. At that time she was in a shared room with four other patients, separated only by curtains. The lady next to her had started coughing profusely over the last twenty-four hours. The next day she would be a confirmed COVID case.

There were two patients in the same room in the cancer ward with Neutropenia, which we know makes even normal infections much more riskier. We were told there were no private rooms in the hospital left to move to.

This made my Mother extremely uncomfortable, and even more so the next day when another patient was confirmed COVID positive. Later that day the last patient left started coughing.

It was late and I had already gone home to sleep, along with my Dad. My sister was just about to head home when she heard the news of the next case.

By this time I had already placed a call to the head nurse, and then spoke to the hospital manager who would not budge on the ability to move my mother if not to a private room, to the end of a hall, a spare closet- somewhere where she would not be at grave risk.

By sending emails you are also documenting information. We also recorded appointments over the phone, conversations with insurance companies and anything relevant to my Mom’s journey. This way you retain all information given to you and can also hold all providers accountable to what was said. We’ve compiled a list below of free or low-cost services that can help you retain everything.

Use Tech to Simplify your Approach

Before this domain was a website, its exclusive use was for email. My mother had enough on her plate with chemo treatments and weekly appointments. We setup a single email address with the domain and gave access to each family member so that whoever was free could respond to emails as they came in. If I missed something, my sister would have already replied by the time I woke up in Toronto.

No Doesn’t Always Mean No

This tip is written by Christopher, obviously. When you need the job done right; do it yourself. I’m not talking about medical procedures, I’m talking about when you know you can find information faster than someone who is tasked to do it on your care team and you may not have much confidence in.

Example A: When we became aware of a third chemo option that was approved in Canada, but was not funded we promptly requested more information from the Cancer centers drug team, who advised us that he would need time to look into it and that he honestly didn’t have much of a clue. If took me about a half hour to go from knowing nothing about the drug, to locating the Canadian manufacturer, contacting them regarding the drugs availability in Canada, and them reaching back out advising the drug was on back order in Canada, but if our Oncologist was to call them directly and request urgent access, the drug could be available in under a week. We never did hear back from the cancer centre on the drug, much less in a week. Some things take time and you’re not actually able to speed them along. Other red tape issues you can assist with and complete the leg work for your care team (even though you really shouldn’t have to).

Join Community Events

If we want to see continued change, we have to be visible. Volunteerism, especially fundraising for support organizations that helped us in our journey is an excellent way to ensure progress keeps happening.

Advocacy organizations like Craig’s Cause are doing just that. Each year they fund pancreatic cancer research and host events like Kicking PancreAS to do so. This year, we TRIPLED the amount raised last year in Newfoundland. Bethany was even asked to say the opening words at Kicking PancreAS in Newfoundland. To date, Team Heather has raised over $12,000.

Team Heather Raises Close to $10,000 in support of Pancreatic Cancer and Craig’s Cause

Craig’s Cause has announced they will be rewarding a research grant in Heather’s name as Team Heather’s Raceroster fundraiser for Craig’s Cause is just shy of $10,000.

Team HeatherChristopher Cutler

Our experience with our mother, Heather, taught us the importance of resilience, hope, and advocacy. From seeking care at high-volume cancer centres to obtaining second opinions, every step we took was aimed at ensuring the best possible treatment. Understanding the limitations of the healthcare system and being prepared to self-advocate will get you far.

Caregivers play an indispensable role in this journey. Whether it's spending late nights researching options, providing emotional support, or being hands-on during hospital stays, every contribution is valuable. Our family learned that working together as a team made all the difference. Because of our experience we will be forever bound to the pancreatic cancer community and everyone fighting will continue to inspire us.

This guide is designed to equip you with the knowledge and resources we've gathered, helping you focus on your fight and hold onto hope. Hope is so important and please don’t let anyone take that from you. As our Mom would say, we just have to take it a day at a time. You are never alone in this battle, and with the right support, you can navigate this these waters.