When the American Cancer Society began a century ago, “palliative care” meant making cancer patients as comfortable as possible in the days that remained to them post-diagnosis; in other words, it was synonymous with end-of-life care. Today, our ability to treat and in some cases cure cancer has led to the expansion of the term palliative care—it now encompasses pain relief during and after treatment, management of side effects, among other issues affecting cancer patients and their families, and is no longer specific to terminal cancer.
Nearly 1.7 million people will be diagnosed with cancer in 2013. On top of that, there are an estimated 13.7 million cancer survivors living in the US. By 2022, that number is expected to rise to almost 18 million. These survivors face a variety of physical, social, psychological, financial, and spiritual issues during treatment and sometimes for the rest of their lives. The American Cancer Society supports quality of life and survivorship research to lessen the negative effects of cancer and its treatment and to improve the lives of cancer survivors and their families.
The Society is currently funding more than $26 million for cancer survivorship and quality of life research. These efforts include:
Of the nearly 1.7 million people diagnosed with cancer each year, about 60% experience pain during treatment. Pain persists for a third of all cancer patients after treatment ends, resulting in significant physical limitations, sleep problems, and diminished quality of life.
The prevalence of pain is particularly high among lung cancer patients who receive thoracic surgery, a life-saving procedure frequently used to treat lung cancer. Society-funded researcher Barbara Hastie, PhD, is studying pain in patients undergoing thoracic surgery for lung cancer with the goal to develop a model to predict who is at higher risk for acute pain or chronic pain after surgery. Such a tool could provide the insight needed to more effectively prevent and treat pain.
All cancer treatments come with the risk of side effects. For the vast majority of patients, that means dealing with at least some of those effects during and possibly after treatment. While certain side effects can be easily recognized and treated – for example, nausea and vomiting, low blood counts and diarrhea – others, such as sexual problems and fatigue, aren’t as easy to remedy.
In collaboration with the National Cancer Institute and the American College of Surgeons, Tenbroeck Smith, director of patient reported outcomes research in the Behavioral Research Center, has initiated the Patient Reported Outcomes Symptom and Side-Effects Study (PROSSES) to address the Society goal of establishing and implementing a process to measure the effective control of pain, other symptoms, and side effects for those who have been affected by cancer. In 2012 PROSSES got federal approval and entered the field at 17 hospitals across the U.S. In 2013, the study will complete recruitment of 2,200 patients and begin producing results.
Men treated for prostate cancer often must cope with long-term sexual side effects of treatment. Through detailed interviews with men and their partners, Society grantee Daniela Wittmann, MSW, will study how men and their partners cope with sexual recovery after surgery for prostate cancer and how they view their partner’s role in the recovery process. Using that knowledge, researchers will develop strategies to support couples who want to restore intimacy after prostate cancer treatment.
Society-funded researchers are also studying the most common side effect of treatment: fatigue, which affects anywhere from 70% to 100% of patients. For instance, John Merriman, MS, is researching whether changes in genes involved in inflammation put breast cancer patients at risk for severe attentional fatigue, a type of fatigue that diminishes a person’s ability to concentrate for a sustained period of time. The hope is doctors would provide proper guidance to patients at high risk for attentional fatigue. New drug targets could also be identified to help reduce the symptom’s severity.
More children are surviving cancer than ever before thanks to major treatment advances in recent decades. In the mid-1970s, fewer than 60% survived 5 years or more. Today, more than 8 out of 10 children do. But the treatments responsible for saving lives can result in lasting health problems.
Children with a type of brain tumor called medulloblastoma are often treated with radiation to the brain, a treatment that can cause problems such as personality changes, trouble learning at school, and memory loss. Society grantee Shahab Asgharzadeh, MD, is developing a gene expression tool to predict which children can be cured with chemotherapy alone, thus sparing them the brain-damaging effects of radiation.
Fertility problems are another long-term effect of treatment faced by young survivors. Society-funded researcher Jessica Gorman, PhD, is using the experiences of female cancer patients ages 16 to 30 to develop a culturally appropriate reproductive questionnaire that includes a specific set of questions to measure fertility concerns. The hope is healthcare providers will use the questionnaire to identify patients with fertility concerns in order to connect them with support and information.
Research supported by the Society has added to our understanding of the physical and psychosocial effects of cancer on survivors. But there is still much to learn and more to do. That’s why the Society is collecting information about the quality of life of more than 15,000 cancer survivors nationwide through the Studies of Cancer Survivors surveys. Society researchers hope to identify the needs of long-term survivors and design programs and interventions to improve their quality of life.
A recent analysis using data from the Studies of Cancer Survivors showed that survivors in this study were generally not compliant with Society guidelines in the areas of nutrition and physical activity, but were compliant with the recommendation to avoid tobacco. While 80-90% indicated that they do not smoke, less than half of the survivors reported meeting the physical activity recommendation, and only 20% met the nutritional recommendation for fruit and vegetables consumption. The study also showed that those who were not compliant with any recommendations had the lowest overall quality of life, while those meeting all three recommendations had the highest quality of life.
As the number of cancer survivors continues to grow, finding ways to help them live well will become increasingly important. The Society is committed to continuing its efforts in this area.