Researchers Seek Cancer Survivors

Cancer survivors are being asked to tell their stories.
The Life After Cancer Study at University of Auckland’s School of Nursing is asking long-term cancer survivors to identify any issues they may have faced (or are still facing) once surgery, radiotherapy or chemotherapy treatment has ended.  The questionnaire covers topics such as physical and emotional wellbeing, persistent symptoms of cancer treatments, effects on social life and family members, effects on employment and finances, and experiences with healthcare services.

“Improved cancer treatments have resulted in a growing number of survivors who live many years beyond their cancer diagnoses,” Associate Professor Jill Bennett (pictured) says.  “This project will be an important study of cancer survivorship issues in New Zealand as most cancer research to date has focused on issues evolving around biomedicine, prevention or treatment.”

“By getting information directly from the survivors, we can create more awareness of the needs of cancer patients and the problems they face.  Most survivors feel they changed in many ways after they were diagnosed and are keen to share their experiences in the hope of helping others.”

The study team is looking for cancer survivor volunteers who were aged 18 or older when first diagnosed with cancer and who are at least six months beyond their last surgery, chemotherapy or radiotherapy treatment.  Maori and Pasifika are especially encouraged to participate.  Volunteers are asked to spend one to two hours completing a written questionnaire at home and to then post it back in a supplied freepost envelope.

To take part in the Life After Cancer Study or for more information, contact the study’s Project Manager Tanja Ottaway on 373 7599 ext 89752 or from outside Auckland: 0800 333 227.

More about the study
In New Zealand, though the number of cancer diagnoses is expected to increase in the next decade, cancer deaths are decreasing due to new sophisticated treatments resulting in a growing number of patients who become long term cancer survivors.  Some cancers that were once uniformly fatal, such as testicular cancer, are now cured in nearly all cases. And many people who get common cancers—cancers of the breast, colon and prostate—become long-term survivors. The major forms of cancer treatment—surgery, chemotherapy, hormone therapy, and radiotherapy—have saved many lives, but these treatments can have unwelcome long-term effects. Even when cancer has been completely eliminated, many survivors have persistent problems, such as fatigue, anxiety about cancer recurrence, sexual difficulties, loss of bone density, balance difficulties, trouble concentrating and other symptoms. Some cancer survivors also report financial and workplace difficulties as a result of their cancer experiences.

A study of issues faced by cancer survivors in New Zealand has recently been funded by Westpac Institutional Bank and Genesis Oncology Trust. The Life After Cancer Study being conducted by University of Auckland’s School of Nursing will provide an understanding of the issues faced by cancer survivors from the viewpoints of the survivors themselves. Cancer survivors will answer a written questionnaire developed by an interdisciplinary research team at the University of Auckland and the University of Otago in conjunction with cancer specialists from Auckland Hospital. The questionnaire will address many issues commonly reported by cancer survivors in other countries, with space for New Zealand survivors to mention any additional issues as well. The questionnaire will be revised during the study in response to participants’ feedback, and the final version of the questionnaire will be used for an even larger nationwide survey of cancer survivors.

Dr. Jill Bennett, leader of the research team, says that finding cancer survivors in New Zealand is a significant challenge of this study, as there is no central registry that follows survivors after they complete cancer treatment. “When we talk about the study with cancer survivors, there seems to be great enthusiasm for the idea of answering questions about their experiences with cancer. Most survivors feel they changed in many ways after they were diagnosed with cancer and are keen to share their experiences in the hope of helping other survivors”.

The Life After Cancer Study is an important first step in understanding the survivorship part of the cancer continuum. Knowledge gained from survivors who answer the questionnaire will be useful in making a persuasive argument for developing solutions to problems faced by New Zealanders who live long lives after cancer and cancer treatment.

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