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The Emergence of Survivorship Programs

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There has been a huge emergence in modern cancer care. This growing trend is survivorship care programs. Ten years ago, cancer survivorship programs were almost unheard of at hospitals. Now with more cancer survivors living longer, these programs are everywhere at large medical institutions and community hospitals as well.

The purpose of these programs is to address short and long-term side effects as well as quality of life issues that may be present long after a patient is cancer-free. These programs encompass many things ranging from premature aging, to physical therapy, sexual health, pain management, and psychological counseling.

Cancer Treatment Centers of America at Midwestern Regional Medical Center Survivorship Support team works to anticipate future health challenges beginning at the patient's first appointment so potential issues may be addressed and in many times prevented. Tom Lay, Director of Survivorship Support at CTCA, talked to Brandi Walker about when and where did these programs first began, how effective have they been, and how impactful they will be for the hospital's future.

1. When and where did these programs first begin?

In 1971 President Richard Nixon announced the nation's War on Cancer by signing the National Cancer Act of 1971. At that time not a lot of attention was paid to cancer survivorship issues – in the early years of cancer treatment the term survivor was often a reference to the relatives of the deceased rather than the cancer patient. As new treatments have been developed there has been a burgeoning population of long-term survivors. In 2007 there were approximately 12 million survivors. Current projections from the American Association for Cancer Research estimate there will be approximately 18 million survivors by the year 2022.

As this population has grown, so has the awareness of the late and long-term effects of cancer and cancer treatment. In 1985 Fitzhugh Mullen, MD, former Deputy Surgeon General of the United States, wrote about the different “seasons” of survival – highlighting the third season where people were in a state of long term survival. In this third season he wrote of various survivors' experiences with cancer, describing some as being cancer-free and free of cancer, while others were cancer-free but not free of cancer. This last term was referring to some of the enduring effects both physically and psychologically.

The National Cancer Institute established the Office of Cancer Survivorship in 1996 in recognition of the growing population of cancer survivors. The Office of Cancer Survivorship's mission is to “enhance the quality and length of survival of all persons diagnosed with cancer and to minimize or stabilize adverse effects experienced during cancer survivorship.”

In 2004, members of the Cancer Treatment Centers of America patient advisory board realized how much they had in common, particularly in regard to side effects of treatment and their struggles to overcome them. While the integrative oncology services provided at CTCA had served them well during treatment, they shared that additional support was needed to help them manage the long-term side effects of treatment that challenged their quality of life. A team was soon established to help all CTCA patients receive the extra support and care they needed. Known as Survivorship Support, the team educates and counsels patients on everything from sexuality/intimacy issues to maintaining a healthy lifestyle to adapting to a ‘new normal’ after primary treatment.

In 2005 the Institute of Medicine released a report entitled From Cancer Patient to Cancer Survivor: Lost in Transition. This report provided a significant level of detail about the late and long-term effects cancer survivors face as well as highlighting the gaps in support for patients who are well past the treatment phase of cancer care. The committee charged with creating the report made ten recommendations for improving the care for the cancer survivor population. Shortly after the release of the report, training programs started appearing for the development of cancer survivor programs. In hindsight, the release of this report was a watershed event for the creation of survivorship programs across the nation.

Today the cancer survivor movement has advanced to the point of survivorship care now being a standard of care rather than a recommendation or suggestion. Beginning in 2015 the American College of Surgeons' Commission on Cancer will set cancer survivorship and navigation as an accreditation standard for attaining the Comprehensive Community Cancer Center accreditation designation.

2. How effective have these programs been in improving a CTCA patient's quality of life?

Virtually every service and every visit in Survivorship is about improving our patients’ quality of life. On a daily basis we help patients on their path of recovery and recuperation. Often it’s a combination of physical, emotional and social issues that present barriers to a better life. Our team often works as health strategists – helping patients access the most effective resources for their circumstances. Since launching our program in 2004 we have developed a variety of resources and tools that are designed to zero in on the most significant issues. Those tools have led to a number of new insights into the issues patients are facing and shaped the services we offer. We’ve transitioned from identifying what the issues are to testing what the best solutions are. Every day is an evolution in effectively addressing the needs of our patients.

3. How effective have these programs been in maintaining these lives?

Beyond quality of life issues, the survivorship services we offer address risk management (risk for recurrence, risk for secondary cancers and risk for other health conditions). There are a number of factors for future risk ranging from heredity to environmental factors and lifestyle choices. While we cannot change someone’s genetic risk, we can provide him or her with the tools and knowledge on what they can do to maximize their control over their circumstances. As the effectiveness of cancer treatments improve patients’ risk is often greater for other issues, such as heart conditions or diabetes, to have a more significant impact on their lifespan than their cancer diagnosis. For high-risk patients, the focus is on vigilance and helping patients manage maintenance or prevention medications.

4. How impactful will these programs be for the future of CTCA?

Right now we’re seeing a further shift in philosophy about survivorship. Forty years ago survivors were the relatives of the deceased. Later, survivorship evolved to something that happened to patients after treatment. Most recently, the definition of survivorship begins at the point of diagnosis. Our team has taken this definition to heart and today we’re reformulating some of our services to meet patient needs as close to the point of care as possible rather than further down the road. In some cases survivorship services may start before the treatment begins. Many of the risks for side effects are very predictable – which raises the thought of why wait, let’s see if we can prevent the effect from happening or at least minimizing its impact. CTCA has always addressed the needs of patients. We continue to reassess what their needs are and adjust our services, technology and talent accordingly.

For more information on CTCA survivorship support team, visit http://www.cancercenter.com/treatments/survivorship-support/.

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