Those of us impacted by cancer are eager to play a role in decisions related to our care, but where do we start?

A recent Canadian Association of Retired Persons (CARP) survey of its members who have or have had cancer, or cared for someone with cancer shows that almost 80 percent want to be involved in their treatment decisions at all times. Encouragingly, a similar percentage felt genuinely consulted by their medical team regarding their cancer care plan.

But in practice how do you make this happen? How can you make sure your cancer care meets your unique needs, values and that it is adapted to your personal situation?

The first step is to take the time to let your medical team know about you – what’s important to you when it comes to your care.

“Doctors can’t be mind-readers about what patients really want. Patients need to talk things over with their care team, get the facts they need, and collaboratively work with their team to make the best decision for themselves” said John- Peter Bradford, a cancer survivor and co-founder of the advocacy group the Life-Saving Therapies Network (LSTN).

Dr. Rosalyn Juergens, an oncologist at the Juravinski Cancer Centre in Hamilton, Ontario, agrees.
“A patient’s goals and personal priorities are important for the medical team to evaluate and discuss openly and honestly with the patient.” She adds “as I often explain to my patients, I believe in shared decision-making. I bring to the table expertise on cancer treatments, and you are the expert of you. Together we can build a plan that is best for you.”

To facilitate this dialogue and empower patients in understanding their choices, LSTN has developed a practical booklet (available here). While this toolkit is geared towards patients diagnosed at an earlier stage (when the cancer is localised), patients who have been diagnosed at a later stage may also find the practical tips and questions helpful.

However, it’s not always easy to have open discussions about your care with your medical team. The CARP survey reveals that nearly one quarter didn’t feel or were unsure whether they felt comfortable communicating their fears, personal goals, and priorities to their medical team. Many also felt uncomfortable challenging information received from their medical team and nearly half were uncomfortable or unsure about asking for a second medical opinion.

For some respondents in the survey, the concern about asking for a second opinion related to concerns about repeating the referral process again or uncertainty about the feasibility of obtaining another specialist. These concerns relate to a nexus of healthcare issues that CARP is urging the government to fix through more investment and better allocation of resources. You can read more here.

For other respondents, though, the hesitation relates to worry about how the healthcare team might receive their feedback as a patient.

“I know it can be sometimes uncomfortable to share personal information and scary to push back
on information, but please speak up and share your thoughts, feelings, and concerns. This will help us develop a treatment plan that is best suited to you”, stresses Dr. Juergens. “Seeking a second opinion also reflects your commitment to informed decision-making rather than
a lack of trust in your medical team, and many doctors may appreciate and support the idea of a second opinion,” she adds.

Bradford agrees. “My medical team and I became partners. The relationship we developed helped me advocate for myself more effectively, and the doctors went an extra mile for me.” To learn more about becoming your own best advocate for your cancer care or to help others close to you who are facing these challenges, visit the “It’s In You To Fight Cancer” website.

Potential questions to ask your medical team: 

  1. What type and stage of cancer do I have?
  2. What is the prognosis for my specific cancer?
  3. What tests will be done to analyze my cancer type and determine the best treatment options? For some cancers, this may include biomarker testing, which helps finds genes, proteins and other substances in the cancer tumour to identify its exact type and help determine what treatment is likely to work best.
  4. What treatment options are available to me and what are their potential benefits, risks and side effects?
  5. If I need a treatment, is it an infusion or is it taken orally? How often do I have to take the treatment? How long will I be on treatment?
  6. How will the treatment affect my daily life, including work, family, and personal responsibilities? Also, if something is especially important to you (like a special trip or attending a graduation or a wedding), let your medical team know in case one or more treatments might not be an ideal fit for you.
  7. What do I do if I feel unwell during or after a treatment?
  8. Are there any clinical trials or research studies that I might be eligible for?
  9. How will we monitor the progress of the treatment?
  10. Are there any support services or resources available to help me during treatment?

These questions were taken from the Life-Saving Therapies Network booklet, which can be downloaded here.


This article was made possible with support from MERCK CANADA INC.