diagnosed with pancreatic cancer: how support and connection can fill the gaps for people in need
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pancreatic cancer canada has developed a program, ask an expert, designed to fill in gaps for people who are diagnosed with the cancer, as well as their loved ones. people call or email with their inquiry—whatever it may be—and they’ll be directed to the proper resource.
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this article was produced by the healthing editorial team with the support of a grant from pancreatic cancer north america. while pancreatic cancer north america made the production of this article possible, they did not have any editorial influence or control over the content, including review prior to publication.
being told you have pancreatic cancer can feel as though the entire world has shattered around you because of its high mortality rate. the cancer, which starts in the cells of the pancreas, is complex to treat and challenging to detect early on, making later-stage diagnoses more common.
“after a cancer diagnosis, where people are dealing with a lot of overwhelm, that kind of shell-shock feeling can result in a lot of confusion or inability to convey or communicate what you would like to ask, so certainly those are the things that become difficult initially, early on,” said maureen elliott, senior manager, programs and support with pancreatic cancer north america.
while approaching this type of cancer diagnosis can be extremely difficult, there are several ways that can make navigating the system, as well as living well with pancreatic cancer, much easier.
advocating for the best approach for you
elliott notes that the approach for people recently diagnosed with pancreatic cancer will be “different for everyone.” there is no one-size-fits-all, because several factors will go into how people find their care team and support, as well as how they access treatment.
according to elliott, several factors come into play.
“your education, your experience with the healthcare sector, your ability to self-advocate, are you a newcomer, is english your first language?” she said. “depending on where you live in the country, it can be very difficult as well to navigate those spaces.”
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it’s also challenging for people if they don’t know how to connect with a specialist or don’t have access to a cancer care centre. computer and internet access, as well as a person’s age at diagnosis, also play a role, highlighting the intricate, intertwining factors that determine how easy or hard it will be for a person to connect with the right individuals and get on the right path toward treatment.
“it can vary dramatically depending on people’s circumstances,” she said.
that’s why it’s vital that people do what they can to find the approach that works best for them in their care and advocate for themselves as best they can, regardless of the roadblocks ahead.
“we suggest that folks do their best, whether individually or through a support person, whomever that may be, that they really try to be a good advocate for themselves and to take an active part in their care,” said elliott. “the ability to do that allows you to ask for the things that you need.”
elliott notes that one way to always be prepared to advocate is to gather all documents, such as scans and medical reports, so they’re readily available when it’s time to meet with specialists or participate in clinical trials.
“it can help people who maybe need a bit more time to process to go back to those things,” she said. “and if you’re going through chemo or any type of standard of care treatment, the brain fog that can come with that can limit your ability to process and remember some of this information, so just having the ability to refer back to that.”
finding the right supports for pancreatic cancer
establishing a support system and taking advantage of all the resources available is vital for someone living with pancreatic cancer. since it is a rare and particularly devastating type of cancer, the experience can feel incredibly isolating, with access to specialists, people to talk to that may understand, and other sources of support more hard to find than in other types of cancer.
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pancreatic cancer north america
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“we know that the survival rates with pancreatic cancer are very low, that folks are being diagnosed in very late stages,” said elliott. “it is an underfunded cancer, so the accessibility is less. pancreatic specialists are fewer and farther between, so folks, i think, come into this diagnosis and they’re already dealing with what feels like the worst diagnosis they could receive.”
pancreatic cancer north america has developed a program, ask an expert, designed to fill in gaps for people who are diagnosed with the cancer, as well as their loved ones. people call or email with their inquiry—whatever it may be—and they’ll be directed to the proper resource.
for example, if a person is considering participating in a clinical trial for their cancer treatment but doesn’t know where to start, they can call or email ask an expert, and they’ll be provided with all the information they need to find and apply for a trial they’re interested in.
maureen elliott, senior manager, programs and support with pancreatic cancer north america.
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every inquiry goes through elliott, and she and the team at pancreatic cancer north america “triage every inquiry,” giving patients personalized feedback.
“we’re there as an option for folks who have a bunch of questions, don’t have enough time with their care teams because everyone is stretched thin, and sometimes just need space to ask all the questions they think are small, but really aren’t because all of these things impact people’s ability to feel connected and feel supported,” she said.
other ways they can help are by connecting people with other cancer support programs, directing them to the right specialists or contacts for extended care, whether that be psychological or physical or even a second opinion, or helping them find out their hereditary risk, even if they don’t have pancreatic cancer.
they can also act as a point of contact for caregivers who need support or grieving families who have lost a loved one due to pancreatic cancer.
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elliott notes that through the program, they can “alleviate some of that stress and pressure and really just try to make things a little bit easier because we know that people who are impacted by pancreatic cancer are under tremendous stress and burden and often feel isolated. it’s a very niche cancer. it’s a very specific experience, and they don’t often see themselves reflected in other cancer spaces.”
don’t be afraid of a second opinion
with pancreatic cancer, some people may trust their healthcare providers completely, while others may want to get a second opinion. elliott notes that “getting a second opinion” is your right as a patient, and it can work in your favour even if the diagnosis remains the same.
the first revolves around treatment. for example, if your care team outlines a specific therapy, but you’re not quite sure you’re comfortable with it or remain on the fence, speaking to someone else with information on therapies for pancreatic cancer can help soften those doubts or “open new doors or avenues” for other treatments that may feel better for you.
this is especially helpful for people living in rural areas or places where access to specialized cancer centres is limited.
“you can have those appointments with bigger cancer centres or specialists, a virtual capacity to see if you know the route that has been suggested to you feels right and is right for you,” said elliott. “it can help people feel more at ease with what’s happening.”
when people feel more comfortable with their care, they are more able to tackle other hardships they’ll face when diagnosed with pancreatic cancer, such as palliative care measures.
moving past the stigma surrounding palliative care
when people hear the words palliative care, they often assume that it’s the throwing-in-the-towel approach, but according to elliott, palliative care and end-of-life care are two very different things. the stigma attached to the term palliative is what keeps that narrative going, and to get past that, people with pancreatic cancer will have to recognize and learn about what it’s really about: quality of life.
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“it’s really just having the ability to live well while also living with cancer, and that can mean a lot of different things for different people.”
she notes that quality of life looks different for everyone, and that some may need more emotional or spiritual assistance, while others may want to maintain a high level of physical well-being. it’s not about letting go of your health, but rather maintaining it as best as you can.
“it’s not about giving up,” she said. “it’s something that we want folks to ask about right away.”
palliative care gives people the ability to “feel stronger and healthier” while they undergo treatment for pancreatic cancer, and in the end, it can also potentially positively impact treatment by improving how well the body tolerates certain drugs or by helping people stay present in their lives.
elliott says that she’s seen firsthand the impact that palliative care has on people with pancreatic cancer, and always encourages others to find their own journey through palliative care.
“we see that reflected in our community members in their ability to have memories with their children and their families and their loved ones, to be able to take trips and do activities that they like and to not lose themselves completely or their identity inside of what could potentially take over their life.”
it’s about maintaining control when so much is being taken away from you, not speeding past the treatment towards a possible end.
maintaining your identity and legacy
being in control of your care and maintaining a life outside of pancreatic cancer is a vital piece of the puzzle when dealing with a diagnosis. people can be both—someone undergoing cancer treatment and someone who lives their lives, connects with families, and does things that are good for their peace of mind.
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according to elliott, maintaining identity can be done through a variety of ways. the first is coping with the emotional impact, which can be done through support programs, peer support or counselling, so that people can “navigate those big decisions.”
“whatever your experience is, having that connection can help you kind of make sense of your new reality,” she said.
thinking about legacy is another area where people may need a little help.
“think about what legacy means to you, and like a living legacy,” said elliott. “legacy planning doesn’t have to be about end of life either. it can be about that living legacy. how can you hold on to the parts of your life that really reflect who you are?”
she notes that taking note of what you want to build and what you want your life to look like is part of identity and legacy, and that authenticity is a key aspect of undergoing pancreatic cancer treatment.
“it’s also important to consider end of life as well, as hard as that may be, because end of life … is a reality for so many of our patients in this community.”
“what do you want to leave behind? how do you want to be remembered? what are ways you want to be reflected in your family and with your loved ones after you’ve passed?” she said.
elliott notes that some members stay active and participate in runs and events, while others volunteer, and some may just find their own ways to heal through making art, going on trips, or taking photos to “have those physical reminders.”
your way of maintaining identity and legacy will not look like anyone else’s, and it doesn’t have to.
“you define those things within either yourself or with your loved ones.”
fostering connection to cope with pancreatic cancer
connectedness is important in cancer care and support, and when a cancer as rare and devastating as pancreatic cancer occurs in someone’s life, it can feel as though no one understands the frustrations that arise. but elliott wants people to know that there are people who validate and identify with what people are going through, and it’s important to tap into these resources.
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“reaching out … helps people to remove isolation and move forward with more confidence and clarity,” she said. “they have more ability to navigate the experience because they are connected with resources to help them feel like they have more autonomy.”
she continued, “we want people to have the ability to sort of transform that fear into a sense of connection and possibility, to be able to find opportunities to make really meaningful choices for their own care rather than having things kind of thrust upon them.”
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