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% (in the US). 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 will be people who, either knowingly or unknowingly, act in ways that may delay your treatments or dismiss your concerns. Some may see your prognosis as the final word, a period at the end of a sentence. These people will never be the change that that pancreatic cancer needs to achieve outcomes comparable to those of more survivable cancers.
Your relationship with those responsible for your treatment should be grounded on trust and mutual respect. If they aren’t keeping the hope alive or they aren’t supporting your journey, they may not belong in it.
This article is about advocacy in a healthcare system that, anywhere in Canada, is overwhelmed right now.
So let’s get into it.
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.
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.
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.
Familiarize yourself with the treatment options available:
Surgery: Procedures like the Whipple are considered when the cancer is localized and operable. Surgery can be life-saving but requires careful evaluation by a skilled surgical oncologist.
• Chemotherapy: This is often a cornerstone of treatment, used to shrink tumors or manage symptoms. It may be administered before surgery (neoadjuvant) or after (adjuvant).
• Radiation Therapy: Radiation can be targeted to shrink tumors and alleviate pain, often used in combination with chemotherapy.
• Targeted and Immunotherapies: These newer approaches are part of precision medicine, aiming to target specific mutations or biomarkers unique to your cancer. Discuss these options early on with your oncologist.
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.