Inform Survivors About Possible Delayed Toxicity

July 1, 2002

ST. PETERSBURG, Florida-As a nurse and 22-year survivor of Hodgkin’s disease, Debra Thaler-DeMers, RN, OCN, from the National Coalition for Cancer Survivorship (NCCS), brought her personal survivorship perspective to the Late Effects of Normal Tissues (LENT) IV workshop on late effects criteria and applications.

ST. PETERSBURG, Florida—As a nurse and 22-year survivor of Hodgkin’s disease, Debra Thaler-DeMers, RN, OCN, from the National Coalition for Cancer Survivorship (NCCS), brought her personal survivorship perspective to the Late Effects of Normal Tissues (LENT) IV workshop on late effects criteria and applications.

Bone Marrow Failure

With her second pregnancy, Ms. Thaler-DeMers was diagnosed with bone marrow failure, a late effect of her Hodg-kin’s disease treatment. This complication was not apparent, she said, until she faced the extra demands of supplying the fetus with blood cells, when it became a crisis situation.

"We need to let survivors know what to watch out for without scaring them. This can be done by encouraging them to maintain their health and optimize their quality of life," Ms. Thaler-DeMers said. "Not only oncologists but also primary care doctors who follow these patients through the years should be educated about the long-term and late effects of cancer treatment."

Through her work at a cancer hospital, Ms. Thaler-DeMers encountered two other women in a support group who had received treatment for Hodgkin’s disease and who later needed mastectomy for breast cancer.

She later saw an article in the Journal of the National Cancer Institute (85:25-31, 1993) showing that women treated for Hodgkin’s disease had a relative risk of breast cancer of 13.6 with follow-up equal to or exceeding 15 years. The study was based on a review of the records of 885 women who had been treated for Hodgkin’s disease.

"This only came to light for me as a fluke because these survivors ran into each other," Ms. Thaler-DeMers said. "With increased mobility in today’s society, often people are not followed in the same center where they were originally treated, so the connection between cancer treatment and late effects may go unnoticed."

She tells her patients to keep a binder documenting all aspects of their treatment, so that new providers can be privy to important facts like their total dose of radiation or chemotherapy.

Many adults with cancer are not being followed long-term by their oncologist, and many survivors and even professionals are not sure what to look for, Ms. Thaler-DeMers said. Although NCCS and other patient advocate groups are lobbying for a Patient’s Bill of Rights, offering cancer survivors the right to lifetime follow-up by an oncologist, the legislation has been stalled in Congress.

In the meantime, to facilitate communication between providers of varied backgrounds, Ms. Thaler-DeMers hopes that the LENT IV conference will set criteria for late effects of radiation therapy, chemotherapy, and other treatments, standardized in similar fashion to criteria already in use for short-term toxicity.

"NCCS wants to work more closely with the physicians to help them realize that follow-up is a long-term commitment, often lasting 10 to 20 years," she said. "People only retain about 10% of the information they’re given at the time of diagnosis. If that information is not repeated, it’s lost, so we need a better mechanism for getting the information out there."

Filling the Knowledge Gap

The latest edition of "A Cancer Survivor’s Almanac" and other NCCS publications aim to fill this knowledge gap not only for survivors but also for the general practitioners who follow them. In today’s era of managed care, it is often difficult to get approval for an annual follow-up by the oncologist. Often the primary care doctor is not sufficiently qualified to recognize late effects and may not be aware of the latest research in this area.

Ms. Thaler-DeMers said that physicians should look for treatable or preventable delayed effects and intervene appropriately. Cardiac toxicity can occur 15 to 20 years after treatment and may respond to medications, but is often unrecognized. The gradual onset of pulmonary fibrosis from bleomycin and radiation therapy may allow effective intervention with medications or with exercise programs to improve stamina.

NCCS hopes to work together with the National Cancer Institute and major cancer centers to build public and professional awareness, she said.

Fertility Issues

Lack of knowledge or communication may have tragic consequences involving both long-term and short-term fertility issues. Although most oncologists understand that chemotherapy and radiation therapy impair male fertility, less than half tell their male patients to bank sperm, according to two studies from The University of Texas M. D. Anderson Cancer Center (J Clin Oncol 20:1880-1897, 2002).

Physicians may fail to communicate vital information about sperm banking because of time pressures or the perception that men are more concerned about their immediate survival. Some doctors may not be aware of new fertility technologies that are often effective even if there is only a small quantity of viable sperm.

Women survivors are also susceptible to delayed effects on fertility. Those who have chemotherapy or radiation therapy may have an early onset of menopause and need to realize that they have a smaller window of childbearing years. "With today’s trend of postponing pregnancy, these women may miss out on being mothers unless they are properly informed," she said.