Everyone knows cancer treatment is a physical and emotional process — but it’s also an ongoing exercise in communication. From the moment of diagnosis, the learning curve is steep, the options are varied and the dialogue is ongoing. To be your own best advocate (and to give your care team every opportunity to succeed), it helps to know how to navigate important conversations that arise during treatment.
Don’t Be Afraid To Ask Questions
The shock of a cancer diagnosis tends to banish rational thought — at least temporarily. Dr. Margaret Churcher, a Calgary family physician, says that when people come in for test results and learn they have cancer, they usually forget every other part of the conversation. For that reason, it’s wise to enlist a family member or friend to accompany you as a back-up listener. If you need more information, your family doctor can provide follow-up appointments.
After diagnosis, you’ll meet your oncology team within weeks (or even days) to start creating a care plan. However, Churcher advises patients to stay in regular contact with their family doctor throughout the treatment process, to manage their basic wellness, including diet, exercise and any existing conditions. “We encourage [patients] to continue looking after themselves as a whole person,” she says.
Churcher encourages patients to make a habit of questioning their care team — not just because it’s the best way to learn, but because uncertainty increases stress. “The more you know, the less anxiety you’ll have,” she says.
However, even the best-informed patients experience anxiety. Cancer treatment can be all-encompassing and fraught with unanticipated stressors, such as missing work or finding childcare. Churcher says family doctors and oncology teams monitor their patients for signs of anxiety and refer them to a range of psychosocial resources and wellness supports, both in the cancer centre and in the community. But there’s no obligation to wait for your doctor to give you a nudge — ask for more support if you need it.
While Churcher wants patients to be informed and curious, she discourages people from researching their diagnosis on the Internet. “It’s often generic and worst-case scenario, and people have a hard time interpreting it,” she says. Instead, ask your care team, or ask your care team to recommend good learning resources.
Get Informed On Clinical Trials
Clinical trials give patients the chance to receive new medications or procedures as voluntary participants in a study. But, at any given time, there are many cancer-related clinical trials taking place, so how do you know which ones you want to engage with — and whether or not you’re eligible to do so?
The good news is that there’s plenty of information available about current opportunities. While the onus is on the care team, not the patient, to recruit participants (once you’re diagnosed, you’re identified as a potential subject), it’s always a good idea to do your own research. Alberta Cancer Clinical Trials provides information about current trials in print materials and on video screens in medical waiting rooms, and online trial databases help narrow your search.
- If you meet the broad eligibility criteria for a certain study, you’ll discuss the possibility with your oncologist. If you decide to proceed, you’ll enter a screening process that can involve blood work, lab work and other diagnostic imaging. Because this screening process is performed by your oncologist and an official clinical trial nurse, it’s a great opportunity to ask questions: What’s involved, medically and logistically, with participating? What benefits can you gain from the trial? What risks are involved? Is it possible to receive the treatment without being a trial subject?
- If your screening shows that you’re ineligible for a given trial, your care team will discuss this with you in person at your next appointment. However, if you can participate, expect to receive a thorough consent form — it can be 20 pages long and may take ample time to read and process — spelling out all the opportunities and risks.
- Can you change your mind after you sign? Sure. You can withdraw from the trial at any point. And, if any elements of the trial change once you’re in it, expect to be notified and offered an updated consent form.
(With notes from Rosemarie Farrell, manager of clinical research unit, Tom Baker Cancer Centre).
Share your experiences
Cancer research helps us understand how to treat cancer and improve the quality of life for people living with it. Who better to weigh in on this topic than people who have experienced (or are experiencing) cancer first-hand?
Increasingly, cancer researchers like Dr. Colleen Cuthbert, a post-doctoral fellow in the Department of Oncology in the Cumming School of Medicine, are asking patients to help them decide where to direct their energy. Cuthbert studies to improve the health and well-being of colorectal cancer patients, and she makes research decisions with the help of priorities identified by patients through Priority Setting Partnerships (PSPs): Groups of patients, carers and clinicians who prioritize future areas of research.
The PSP concept originated in the UK and was formalized in 2004 by a non-profit initiative called the James Lind Alliance. The movement has been gaining traction in Canada for about the last five years.
“Patients are the ones affected by their disease,” Cuthbert says. “Through PSPs, we engage with patients in a very meaningful and thoughtful way to ask them what they think is important for future research.”
Priority Setting Partnerships: How to get involved
Like clinical trials, you can find out about PSP opportunities through information at medical clinics, as well as through social media, community-based support organizations like Wellspring and advocacy groups like Colorectal Cancer Canada. Be sure to ask questions about who is running the study, the goal of the study and the time commitment involved. You’ll go through an informed consent process before participating.
Some PSPs are broad, seeking to include any cancer survivors or patients, and others have a more narrow and specific focus. And unlike clinical trials, participating in a PSP is often a zero-risk activity. You can get involved to the degree that you choose, but there are typically three steps to the process.
The first step often entails an online survey, which identifies priorities for future areas of research. You can also choose to engage in the second part of the study, where you’ll help to rank the priorities identified by the first step, and/or in a third step, where you’ll meet with a group of patients and health-care providers to pare the list down.
When the PSP is complete, researchers can take a final list of patient-identified priorities to research funders — and possibly change the way future care is delivered.