Create Standards to Monitor Late Effects

As a head and neck surgeon for 30 years, I prided myself on staying informed about the latest in my specialty. I focused on the task at hand—getting my patients well and curing them of cancer.

I had no knowledge about the late effects of radiation and chemotherapy, or that late effects could show up years after treatment ended.

Now I know that there is more to curing cancer than seeing the patient free of disease.

After practicing for many years, I faced throat cancer 18 years ago. I was fortunate that twice daily radiation cured my cancer. I was prepared for the expected immediate side effects of radiation, such as severe fatigue, weight loss, difficulty swallowing, overwhelming pain and depression. I coped just as my patients had.

What I was not prepared for occurred 10 years after treatment ended, when I was challenged with life-threatening late effects of radiation: carotid obstruction and severe cervical spine trouble. As I began to investigate the issue of late effects, I was surprised to learn that many survivors were in the same situation.

For 34 years now, I have been volunteering for the American Cancer Society (ACS). More recently, I have been working with the ACS to help improve understanding of the late effects of treatment. I have come to believe that an oncologist’s responsibility for each patient must be from the time of diagnosis to the end of life. As a survivor and as a surgeon, I expect no less.

I have come to believe that an oncologist’s responsibility for each patient must be from the time of diagnosis to the end of life.

Oncology has been slow to recognize the problem of late effects for several reasons. First, the tradition of discharging patients from checkups after five years leads to inadequate follow-up now that research shows the need for extended follow-up to detect late effects.

Another reason has to do with the lack of understanding about whom, if anyone, really is the captain of the “treatment ship.” This has been an age-old problem in which multiple specialists are involved in the care of a cancer patient, and primary physicians are not trained or equipped to effectively monitor and manage long-term and late effects.

Reimbursement from insurance carriers has always been a struggle because ordering tests without a specific symptom and code leads to denial of payment. So surveillance for late effects has to be understood by insurance carriers, which will take a strong advocacy effort.

Also, primary care doctors are not well-informed that late effects can appear in the cardiovascular, hematologic and musculoskeletal systems long after the survivor quits seeing the oncologist. We must convince them that they are a member of the cancer team. And we need to educate them.

Many don’t know that there is 15 percent chance of a second malignancy in pediatric and adult cancer patients who had radiation and/or chemotherapy many years ago.

These diseases might be present in some patients as they age anyway, but they could be accelerated by previous cancer treatments.

Success in cure has a price. In 2010, there are 12 million survivors, many suffering with effects from their therapy that they don’t know are related. There will be an estimated 20 million survivors by 2020, increasing the magnitude of the problem.

What did the cure cost them emotionally and physically?

Today, we have a good beginning with the creation of survivor clinics and other support organizations. National conferences on survivorship research and issues are being received warmly, and national cancer organizations are working on protocols for follow-up.

Accepting a cancer patient from the time of diagnosis to the end of life will greatly enhance the progress on this latest front to improve the quality of life for all cancer survivors. As a cancer survivor and retired surgical oncologist, I am very proud to see the progress, but changing attitudes takes time. Be proactive and spread the word!