You’ve survived cancer. ‘Now What?’

This report from Medical News Today relates to cancer survivorship in the US, but the concerns are of relevance to those of us who are navigating the “now what” stage of our cancer journey here in Ireland too.

“Survivorship is the new buzz word in cancer care as advances in the treatment and detection of cancer have resulted in an estimated 12 million cancer survivors in the United States alone. However, cancer survivors need assistance navigating the complex issues they face after treatment. ABC News veteran Sam Donaldson echoed this fact and raised a host of survivorship issues while moderating a roundtable held at the National Comprehensive Cancer Network’s 14th Annual Conference on March 12.

“A cancer survivor,” Ellen Stovall of the National Coalition for Cancer Survivorship explained, “is a term used to describe anyone who has been diagnosed with cancer as well as caregivers and loved ones of those diagnosed with the disease.” The term survivorship was first coined in 1985, but was expanded to include family members and caregivers since “no one can survive cancer alone.”

Panelist and cancer advocate Elizabeth Edwards noted the importance of a strong support system because as a cancer survivor, “the most benign things will scare you to death.” She relayed a story about how she recently thought a rough spot on her neck may have been a skin cancer metastasis, when it was only a curling iron burn.

Mary McCabe, RN, BS, MA, from Memorial Sloan-Kettering Cancer Center touched on the “fear factor” that cancer survivors continue to live with explaining that her patients often energize themselves to get through the initial treatment, but then they can “run out of gas for the ‘what’s next’ period that comes after treatment.”

The panelists noted that with a documented shortage of oncologists, survivors are challenging the capacity of our healthcare system when they become reluctant to leave their oncologist at the conclusion of treatment. Furthermore, the lack of clear evidence for what constitutes best practices in caring for patients with a history of cancer contributes to a wide variation in care.

Incorporating cancer into a person’s whole life, “is something that has not traditionally been appreciated by clinicians in their clinical practice,” said Ellen Stovall, National Coalition for Cancer Survivorship.

Acknowledging this concern, Douglas Blayney, MD, of the University of Michigan Comprehensive Cancer Center, noted the importance of transition care plans for survivors. “As oncologists, we’re usually focused on recurrence, surveillance, and a secondary cancer developing. However, the transition visit is imperative and needs to be a defined episode to recognize the psychosocial issues attributed to cancer survivorship.”

Author and New York Times columnist Jane Brody applauded Dr. Blayney’s approach stating that, “Clinicians need to initiate the conversation of psychosocial issues that may arise after treatment at the time of diagnosis” and that “patients should not be responsible for reinventing the wheel” in terms of receiving referrals to survivorship resources.

Catherine Alfano, PhD, National Cancer Institute Office of Cancer Survivorship, stressed incorporating the results of a recent Institute of Medicine report on cancer care that identified the need for a screening system that would address the myriad of physical and emotional issues cancer survivors face after treatment. She noted that this would benefit the clinician as well as the patient as they could easily determine what the patient’s top concerns were and refer them to appropriate care.

Kenneth Miller, MD, of the Dana Farber Cancer Institute, also encouraged the development of a standard “check list of-sorts” that clinicians could utilize to ensure survivorship would become a part of their treatment plan for each patient.

The need for consistent and clear communication between healthcare providers and cancer survivors was a topic everyone on the panel felt was lacking and needed improvement.

Ellen Stovall felt that patients often aren’t given enough credit for what they can understand. Elizabeth Edwards mentioned that she felt that her clinicians “were honest, but vague where they thought they needed to be” because perhaps the assumption was that she couldn’t emotionally handle the prognosis. Jane Brody also noted that she’s surprised at how many clinical questions her readers ask her instead of their clinicians.

Dr. Blayney acknowledged the communication gap and stressed again the importance of open communication on past, present, and future issues that arise with cancer survivors.

In conclusion, Mr. Donaldson praised the current administration for earmarking funds for cancer research. Dr. Alfano affirmed the NCI’s commitment to work with the new administration and obtain additional funding dedicated to the entire spectrum of cancer care including survivorship.