Living better with and beyond cancer

For many young people facing cancer, one of the questions they often have is “how will this affect my ability to have children later on?” Some cancers or their treatments affect the reproductive system, which can lead to fertility problems down the road. This means that people often have to make decisions about what steps, if any, they want to take to preserve their fertility soon after receiving a cancer diagnosis, before their treatments begin. To help guide young people with breast cancer in choosing the best fertility option for them, CCS-funded researcher Dr Nancy Baxter and her team developed the Begin Exploring Fertility Options, Risks and Expectations (BEFORE) decision aid, the first tool of its kind in Canada. The BEFORE decision aid was developed in consultation with patients, healthcare providers and advocacy groups and is now available to young people with breast cancer around the world, helping them make informed decisions about their fertility and futures.

For people with prostate cancer, sexual dysfunction is one of the biggest challenges that they and their partners face after treatment. While medications and devices are available to help men regain sexual function, the majority of survivors stop using them. With support from CCS, Dr Andrew Matthew and his team demonstrated the feasibility and effectiveness of a new intervention for prostate cancer survivors that combines medical, psychological and social strategies to improve sexual health. This integrated approach includes educating men about how to use the medications and devices, helping them and their partners manage their expectations, and counselling them to achieve more open communication and greater intimacy. Building on the success of this program, Dr Matthew developed an online Canada-wide sexual health program for people with prostate cancer and is using his expertise to create a rehabilitation program to address the sexual health needs of people with other types of cancer.

Living with the long-term impacts of cancer can be stressful for survivors. To help survivors manage their stress and mental health, CCS-funded researcher Dr Linda Carlson and her team developed an approach called mindfulness-based cancer recovery, a form of group therapy that includes meditation and gentle yoga practices. In a first-of-its-kind clinical trial comparing this new approach to the standard form of supportive group therapy, the researchers found that the new mindfulness-based approach was better at improving breast cancer survivors’ mood, stress symptoms and quality of life. Most of these benefits lasted 1 year later, showcasing the potential of this new therapy to improve the long-term mental wellbeing of breast cancer survivors. 

Thanks to better treatments, 4 out of 5 children with cancer today will survive for longer than 5 years after their diagnosis. While the long-term physical side effects of cancer treatments are well known, the impact of a cancer diagnosis on mental health in childhood cancer survivors and their families is less understood. CCS-funded researcher Dr Sumit Gupta and his team showed that survivors had more medical visits for a mental health complaint, indicating that they were at a higher risk of developing mental health challenges. The most common struggles faced by survivors of childhood cancer were depression and anxiety. The researchers also found that mothers and siblings of children with cancer experience a higher rate of mental health-related visits even decades after the original diagnosis. These findings highlight the need for more resources to support the long-term mental health needs of childhood cancer survivors and their families so that they can live more fully.

When cancer that started in another part of the body spreads to the bone, it causes painful bone metastases. The most common types of cancer that spread to the bones are breast, prostate, lung, kidney and thyroid. 

Thanks to our donors, CCS-funded researchers have made significant contributions to improve the ways in which pain from bone metastases is managed, improving quality of life for people with these advanced cancers.

• Radiation therapy is commonly used to treat bone metastases. However, it can trigger a temporary and oftentimes debilitating pain flare up. The CCS-funded Canadian Clinical Trials Group (CCTG) led a trial which found that the steroid dexamethasone reduced radiation-caused pain flares without serious side effects. Based on these findings, the researchers believe that dexamethasone should be included as part of the standard treatment for bone metastases, which could change how people with advanced cancer are cared for around the world.
• CCS-funded researcher Dr Mark Clemons and his team led the first prospective trial to show that people with metastatic breast cancer that had spread to the bone may experience less pain if they are switched to a different type of a bone strengthening drug called bisphosphonate. Bisphosphonates help slow the breakdown of bones. Thanks to this work, the new type of bisphosphonate is now commonly used in the treatment of bone metastases, helping people better manage their pain.
• The most common site of bone metastases is the spine where these secondary tumours can cause pain, weakness, difficulty walking and bowel and bladder problems. Since these tumours are often incurable, the goal of treatment is to help people manage their pain and live as fully as possible. A practice-changing clinical trial led by the CCS-funded CCTG showed that a new approach that uses fewer but higher doses of high-precision radiation therapy significantly improved quality of life for people whose cancer has spread to their spine. Compared to people who received conventional radiation therapy, more than twice as many people receiving the new treatment experienced a complete reduction in pain, remaining pain-free for as long as 6 months. People who were treated using the new approach were also more satisfied with their care and quality of life because they only needed to go to the hospital to receive 2 treatments instead of 5. These findings will likely change how people with secondary spinal tumours are cared for around the world, helping them live more fully.

Palliative care focuses on quality of life and includes pain and symptom management and emotional, psychosocial and spiritual support. For people with cancer, the goal of palliative care is to help them live better, no matter what stage of the cancer journey they are in. When combined with standard treatments like chemotherapy, radiation and surgery, palliative care can help people live longer, fuller lives.

A key aspect of palliative care is ensuring that people can maintain their dignity and feel heard and respected as an individual. CCS-funded researcher Dr Harvey Max Chochinov and his team developed a tool called the Patient Dignity Inventory (PDI) to help doctors achieve a deeper connection with their patients. To give doctors a deeper understanding of their concerns and priorities, the tool asks people to rate their current condition on 25 different indicators, such as their ability to carry out daily tasks and think clearly and their feelings of self-worth. The PDI tool has been translated into nearly a dozen languages and is used around the world to help people with cancer live a more dignified and meaningful life.

While palliative care can provide benefits and comforts to people with cancer, not everyone uses it. CCS-funded researcher Dr Camilla Zimmerman has done critical work to understand the reasons why. In one study, Dr Zimmerman and her team found that even though people with advanced cancer experienced great benefits from palliative care, they felt that the term “palliative care” carried a negative stigma associated with hopelessness and end-of-life. This perception could cause people to refuse care and support that could significantly improve their quality of life. 

In a separate study, the same researchers found that Canadian oncologists are referring patients too late to specialized palliative care services. While 8 in 10 doctors refer people with terminal cancer to palliative care, most are only referred in the last few months or weeks of life and many are only referred in the last days. In addition to the availability of and acceptance criteria for palliative care services, doctors also identified the stigma around the term “palliative care” as a reason why they did not refer people earlier. By uncovering the barriers to palliative care, Dr Zimmerman’s research highlights the importance of reframing conversations around palliative care and better educating patients, families, healthcare providers and the public so that more people can benefit from these services.

Palliative care also encompasses end-of-life care, which provides physical, emotional, spiritual and social support for people with cancer and their families. Important research by the CCS-funded Canadian Centre for Applied Research in Cancer Control (ARCC) has helped to set benchmarks to measure the quality of end-of-life care provided in each province and how accessible it is to the people who need them. Their work also looked at the role of homecare nursing in improving quality and access to end-of-life services. By defining goals for high-quality end-of-life care and identifying strategies to improve it, ARCC’s research is guiding policy makers across the country in making decisions on healthcare priorities and resource allocation so that more people can receive the end-of-life care that they and their loved ones need.

According to a 2018 report from the Canadian Partnership Against Cancer, 4 in 10 people with cancer reported having practical challenges after their treatments ended. These challenges often involved difficulties returning to school or work. Cancer rehabilitation can help address these concerns so that survivors can go back to doing the things they love.

Head and neck cancer survivors often live with significant and complex treatment side effects and require extensive rehabilitation support. To meet these needs, CCS-funded researcher Dr Sara McEwen and her team created and tested a rehabilitation planning consult to improve access to rehabilitation services. During the consult, healthcare providers work with survivors to determine their rehabilitation goals and make a plan to meet those goals. The researchers found that the rehabilitation planning consult had large, positive effects on helping survivors achieve their goals and feel more satisfied. Based on these successful early results, the researchers are conducting a phase II clinical trial to compare their rehabilitation planning consult with the current standard of care to determine whether it can improve the quality of life for people with head and neck cancers.