Childhood Cancer Survivors have their own unique set of issues that often go unaddressed by health care professionals once treatment has ended and the child enters adulthood. Although the last 20 years have seen growth in survivorship research, this research is rarely filtered down to the people who need it most – the survivors and their families. Dr. Gregory Aune, Pediatric Oncologist, researcher, childhood cancer survivor and advocate, has taken on the position of CKN Editor, Knowledge Translation – Childhood Cancer Survivorship. His goal is simple: to help empower childhood cancer survivors to start a dialogue with their doctors by publishing short, easy-to-read research study summaries, like this one.
When cancer is diagnosed in younger patients, there are a number of unique issues that need to be considered that older patients do not face. Fertility is one of the most important concerns reported by adolescent and young adult (AYA) patients as many hope to survive their disease and go on to have children in the future. Research focused on fertility in AYA survivors has increased in recent years, but there remains a great unmet need for comprehensive reproductive health counseling at all stages of the cancer continuum; before treatment begins and in post-treatment survivorship care.
“Fertility Studies in Young Women with Breast Cancer”
by Dr. Ellen Warner, MD, M.Sc., FRCPC, FACP
For many years there has been a gap in research focusing on breast cancer patients who are aged 40 and younger. Since these women represent just over 5% of all breast cancer cases, they have generally constituted a very small subset of the patients enrolled in clinical trials, which has made it difficult to make progress in addressing the very unique medical and psychosocial issues of this population. A recent Canadian study called RUBY (Reducing the bUrden of Breast cancer in Young women), http://www.womensresearch.ca/ruby-study, jointly funded by the Canadian Breast Cancer Foundation and Canadian Institutes of Health Research, is attempting to change this situation. Over 4 years, 1200 women aged 40 and younger newly diagnosed with breast cancer at 32 cancer centres and hospitals across Canada will be enrolling in RUBY. Almost 200 women have enrolled to date and recruitment is well on target to be completed in 2019. The overall goal of this study is to improve the cure rate and quality of life of young women with breast cancer. RUBY has several sub-studies, two of which, SPOKE and GYPSY, relate to fertility issues.
by Dr Michelle Peate, Department of Obstetrics and Gynaecology, Royal Women’s Hospital, University of Melbourne, Australia
The idea that we can have a child when we choose to is an important part of human identity, and having this taken away from us can be really upsetting. Unfortunately, many young women who are diagnosed with breast cancer face this issue. Treatments for their cancer such as chemotherapy, may mean sacrificing their chances for future children.
The survival rate for pediatric cancer is now over 83% due to tremendous medical advances. There are currently estimated to be over 420,000 pediatric cancer survivors living in the United States. (Robison, 2014). Survivors are living well into adulthood and maintaining productive and fulfilling lives. Pediatric cancer therapy has evolved over time to include not only a curative approach, but one that allows the survivor to live a healthy lifestyle with as few therapy-related side effects as possible.
We interviewed 53 young adult cancer survivors between the ages of 18 and 39 years old across Canada. The intent of the interview study was to ask them about their cancer follow-up care experiences and to assess if the current young adult cancer care system meets the needs of this cancer population. We learned that the health care system does not adequately recognize the unique needs of this group of cancer patients. Young cancer survivors have different needs than the large older cancer populations and they may lack care advocates, such as parents, in the case of children with cancer. In addition, young adults have a sense of invincibility, therefore a cancer diagnosis has a tremendous impact on their sense of world order, future plans and peer relationships.