Rethink Breast Cancer

Rethink Breast Cancer

April 18, 2013 10:46 ET

First-Ever National Survey Finds That Young Canadian Women With Breast Cancer have a More Difficult Experience Than Their Older Counterparts

Rethink Breast Cancer calls for changes to the health care system to address this

TORONTO, ONTARIO--(Marketwired - April 18, 2013) - Rethink Breast Cancer released today the results of its first-ever, large-scale quantitative survey of younger breast cancer patients (20 to 45 years old) which finds that age does have an impact on the breast cancer experience. This age group faces challenges that are not being met by our current health care systems.

Rethink Breast Cancer (Rethink) - a national organization focused fearlessly on the needs of young women who are concerned about, and affected by, breast cancer - commissioned the Needs Assessment Survey of 574 women who have had breast cancer. The results are published in the report, "Breast Cancer in Young Women in Canada - A Needs Assessment". The report calls for a National Standard of Care for Younger Women with Breast Cancer in Canada and calls for Nurse Navigator services to be available for all Canadian women to address some of the challenges unveiled by the survey.

Why is younger also harder?

Rethink attributes two key factors to younger women having a more difficult breast cancer experience than older women: aggressiveness of cancer treatment and life-stage. "When younger women get breast cancer, it often spreads more aggressively, leading to tougher treatments and lower survival rates," said MJ Decoteau, Executive Director of Rethink Breast Cancer. "Add such age-specific issues as fertility, diagnosis during pregnancy, childcare, financial security, and breast cancer becomes a triple threat to younger women. Very little empirical research has been done to fully understand the distinct challenges faced by younger women with breast cancer, and this is why we commissioned a full-scale National Needs Assessment."

Report key findings

  • Younger women are more likely to feel their concerns are not taken seriously by health care providers
  • Younger women are less likely to be satisfied with the diagnostic process
  • Younger women tend to have chemotherapy recommended more often than older women (82% vs. 65%)
  • Younger women have more difficulty navigating the healthcare system
  • Younger women have more difficulty finding women their own age to connect with (this was articulated as very important to almost all of the younger women surveyed, however less than 2/3 of young women were able to make this connection)
  • Younger women are concerned about fertility but many are not getting proper attention for it (more than 50% of the younger women surveyed who were concerned about fertility were not sent to a specialist)
  • Younger women need support for their parents and younger children, as well as for their spouses/partners, which can be hard to find and adds additional stress.
  • Younger women (under 30) are less likely to have private insurance, which can offset the costs of treatments that are not publicly covered
  • Younger women have more difficulty transitioning out of active treatment and experience increased worry around long-term treatment effects and cancer recurrence

"It took 7 months for me to be diagnosed because I was told that at 26 I was too young to have breast cancer. While my friends were discussing marriage and having children, I was worrying about preserving my fertility and the effects of losing a breast. I don't know any other young women with breast cancer and didn't see my experience reflected in any of the materials I was given. I felt very isolated," said Katie Evans of Ottawa.

Rethink calls for immediate action

Rethink Breast Cancer has identified two key priority areas for immediate action that could significantly assist with the challenges facing younger women diagnosed with breast cancer: a Standard of Care for Younger Women with Breast Cancer and that Nurse Navigators be available to all Canadian women.

A Standard of Care would ensure that all community and healthcare workers are aware of the unique challenges with which younger women are confronted during diagnosis, treatment and recovery. By creating protocols around issues such as fertility, side-effect management, childcare and financial implications, a Standard of Care for Younger Women with Breast Cancer could be an important step towards improving the experience of younger breast cancer patients.

In addition, having Nurse Navigator services available to all breast cancer patients would help improve access to tailored information, resources and support services for younger women. Extensive research has been done on the positive impact nurse navigators can have on cancer patients. The survey revealed that younger women in regions with nurse navigators had a much easier time navigating the healthcare system than those in areas without a consistent nurse navigator program. Nurse Navigators can play a major role in supporting and implementing a Standard of Care for Younger Women with Breast Cancer.

"Many younger women are unsure how to navigate the healthcare system and have a particularly difficult time transitioning from active treatment into their "post-cancer" lives," said Ms. Decoteau. "These challenges, along with the difficulty of finding age-specific information and support can lead to a resounding sense of isolation and greater compromise to their mental and physical health. Our report results clearly show that a National Standard of Care for Younger Women with Breast Cancer and National Nurse Navigator Program are essential to ensuring the needs of younger women with breast cancer are met, today and in the future."

About the Rethink Breast Cancer Needs Assessment Report

The bilingual national needs assessment survey for young women diagnosed with breast cancer was conducted online and was open to Canadian women who had a diagnosis or recurrence of breast cancer during the previous six years. A total of 574 women responded to the survey, of whom 65 per cent were 45 years old or younger. The survey was conducted by the Summit Strategy Group, an independent Canadian research firm.

Support for Rethink Breast Cancer's National Needs Assessment was provided by The Canadian Breast Cancer Foundation - Ontario Region, Roche Canada, and Amgen Canada.

About Rethink Breast Cancer

Rethink Breast Cancer is the first Canadian charity that focuses fearlessly and uniquely on the awareness, support, research and advocacy needs of younger women who are concerned about and affected by breast cancer. By taking a bold approach to all aspects of the disease, the organization is championing change in the younger women's breast cancer movement. Rethink Breast Cancer offers several programs for younger women throughout their breast cancer journey, including the Rethink Connects Peer Support Network, 'Live, Laugh, Learn' monthly get-togethers and award-winning 'Your Man Reminder' app to encourage breast awareness. To participate in Rethink Breast Cancer programs, or to join a new generation of influential breast cancer supporters, visit www.rethinkbreastcancer.com.

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