September 19, 2019

Advances in cancer treatment are leading to enormous increases in the number of cancer survivors. Now, providers must learn how to help these patients navigate the physical and emotional burdens of survival, Laura Landro reports for the Wall Street Journal.

Survivorship: How to meet the unique needs of cancer survivors

Being a 'survivor' doesn't always mean the struggle is over

Thanks to advances in cancer detection and treatment, there are almost 17 million cancer survivors in the United States, a number that's expected to rise to about 22 million by 2030, Landro reports.

But life after cancer can be a difficult path to navigate, according to Landro—who describes her own experience after being diagnosed with the blood cancer chronic myelogenous leukemia (CML) 27 years ago.

At the time of her initial diagnosis, Landro writes a transplant was "the only potential cure for CML." Fortunately, Landro was a genetic match with her two brothers. One donated bone marrow to build a new cancer-free immune system, and the other provided the blood cells to prevent against blood clots.

While the transplant was ultimately successful, Landro writes that the experience was "harrowing." She was hospitalized for two months, during which time she experienced "nonstop nausea and vomiting from the chemo and graft-versus-host disease."

After all of her treatment was finally over, Landro emerged to live her life as a cancer survivor—but the disease was never far from her mind. "[T]he chance that the cancer might come back is what [cancer survivors] fear most," she writes.

Ten years after her initial treatment, her fear was realized: Tests found that her disease had returned. A new drug sent the disease into remission—only to reemerge again a few years later in 2006. At that point, she received another transplant from her brother, and the disease is currently in remission.

While the fear of cancer still lingers, Landro writes, "I am fiercely grateful for the designation that all cancer patients want: long-term survivor."

4 ways providers are making post-cancer life easier

As more patients like Landro live long after their initial diagnosis, many providers are adopting strategies to help patients navigate the complications of life after cancer. Landro outlines four key ways providers are improving post-cancer life for patients:

1. Developing less toxic treatments. When cancer treatments are less toxic, their aftereffects for survivors are more manageable, Landro reports.

For example, the standard treatment for Hodgkin lymphoma used to be chemotherapy and radiation, but new evidence has shown that radiation can lead to new cancers and other complications, Landro reports. Some studies have found that chemotherapy alone may improve overall survival rates for some patients while avoiding the harmful effects of radiation.

Researchers also are increasingly looking toward personalized medicine to identify the most effective medications for cancer patients based on their unique genetic makeup, Landro reports.

2. Specialized follow-up care. Survivors of different types of cancer have a wide variety of follow-up needs. According to Landro, survivors increasingly are referred to clinics managed by nurse practitioners and physician assistants certified in oncology that specialize in their cancer.

Landro notes that the University of Pennsylvania established the Abramson Cancer Center Survivorship Program in 2001, and has since expanded it to offer specialized survivorship clinics for any type of cancer.

3. Aiding the youngest cancer survivors. Children are also surviving cancer at higher rates, which means they need lifelong support, Landro writes. That's why groups like the Children's Oncology Group, which is supported by the National Cancer Institute, have put out long-term guidelines to help providers know what problems could arise for survivors of childhood cancer.

The group also has a website created by Texas Children's Cancer Center and Baylor College of Medicine that generates information on the long-term side effects and risks of different treatments, and recommends a variety of screenings and tests for those patients.

David Poplack, a developer of the program, said, "Even if it's been years and you've lost contact with your physician, if you remember the therapies you received as a child, you can get information on your potential risks for late effects."

4. Offering emotional support. Cancer takes an emotional and psychological toll as well, Landro writes, and providers increasingly are working to help patients manage those issues.

For example, the Cancer Support Community offers a Cancer Transitions program that provides six weekly group sessions that cover everything from how to manage medications to exercise programs and stress management training, Landro reports.

Hannah Haworth, who was diagnosed with breast cancer three years ago and underwent several surgeries as well as chemotherapy and radiation, said that at first she was skeptical of Cancer Transitions, but today she says the 12 women in her group "became my lifeline, and brought me through it."

Haworth said the group "was everything I didn't know I needed—being able to talk to people who know exactly where you are and realizing you are not alone" (Landro, Wall Street Journal, 9/15 [1]; Landro, Wall Street Journal, 9/15 [2]).

How to meet the needs of 17 million (and counting) cancer survivors

Cancer programs find it difficult to meet any one of patients' varying needs, so caring for an entire population of survivors demands a new model of care delivery. Many programs are focused on providing patients with treatment and survivorship care plans—but survivorship care encompasses much more.

This study presents strategies for developing a comprehensive yet sustainable program that meets patients’ needs and differentiates your cancer program in the eyes of referring physicians.

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