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Doing right by cancer patients

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In the United States, we’re getting cancer care half-right. Doctors are extraordinarily good at treating the disease — that’s a big reason mortality from cancer has declined over the past 25 years. Unfortunately, medicine has not been so good at detecting and addressing treatment-related problems to protect patients’ health and quality of life.

It’s time to take a broader view of cancer care. Treatment is not just about vanquishing the disease; it’s also about keeping people healthy and feeling as good as possible for the rest of their lives. That approach is the basis of a field called cancer survivorship.

The lack of attention to survivorship is a big problem nationally. The number of cancer patients is on the increase, because of the aging of the Baby Boomers, as well as improved ability to detect the disease and treat it, but the number of clinicians who focus on cancer hasn’t kept up: There are 17 million cancer survivors in the United States, and fewer than 13,000 oncologists. Making things worse, cancer specialists don’t get much training in the ongoing needs of survivors.

So patients often struggle with fatigue, pain and other problems. For instance, lifesaving radiation therapy for head and neck cancer can cause fibrosis of the neck — a painful scarring and thickening of the tissues that can interfere with mobility. If you can’t turn your neck from side to side, you can’t drive properly. If you can’t drive, you can’t get yourself to work. 

Almost all of these problems can be fixed or minimized, especially if they’re addressed early. Unfortunately, two barriers get in the way: Clinicians aren’t asking about these issues, and patients aren’t bringing them up.

This isn’t because of a lack of empathy. Cancer specialists want to do right by patients. But their job is to diagnose and treat the disease. At the same time, many patients are unwilling to speak up about side effects and other issues for fear of distracting their providers from the crucial mission of saving their lives. So problems get missed. And then they become bigger problems.

The nation’s major cancer research and advocacy organizations have spearheaded efforts to address these shortfalls. A cancer survivorship program should begin at diagnosis: Whether a patient is experiencing pain or depression or facing financial problems because of the high cost of treatment, the survivorship team needs to know about it. Then the program should monitor patients to make sure solutions are helping, and to detect any recurrence of cancer, new cancer or late effects of cancer treatment that can occur years afterward. 

Such a program, like the one being launched at the Northwell Health Cancer Institute, stresses whole-person care via personalized survivorship plans. Some survivors are at very low risk of recurrence or ongoing issues, and don’t require frequent follow-ups with their oncology treatment team. What they might need instead is education about managing their health, including potential red flags and an appropriate schedule for checkups.

On the other hand, some survivors are at much higher risk of recurrence and other problems, and may need ongoing treatment from their providers. These may include specialists in palliative care for complex symptom management, cancer rehabilitation to treat or prevent problems in everyday functioning, and psychosocial care to address anxiety or depression.

In the field of cancer survivorship, we have tools that can ensure people get the information and assistance they need to flourish, during treatment and long after.

Catherine Alfano is vice president of cancer care management and research at Northwell Health Cancer Institute.