COMMENTARY

Late Effects of Mantle-Field Radiotherapy in Women

Marilyn W. Edmunds, PhD, CRNP

Disclosures

August 27, 2010

The Late Effects of Mantle Field Radiotherapy: The Information and Support Needs of Women Survivors of Hodgkin's Disease

Grinyer A
Eur J Oncol Nurs. 2010;14:183-189

Article Summary

This research report is from an incidental finding that was discovered during a study on the late effects and long-term consequences of lung cancer in adolescence or young adulthood. The investigator had interviewed a number of female Hodgkin's disease survivors. These women were all statistically likely to develop breast cancer resulting from mantle-field radiotherapy, which they had received years earlier. As the investigator worked with the women, she became aware that these women had not known, during their treatment for Hodgkin's disease, that they would later face a 33% chance of developing breast cancer. Thus, when they discovered their risk years later, they were upset that some of them had developed cancer, but they were angry that this information had not been communicated to them at the time of treatment and that there had been no follow-up to inform them.

Purpose. This study was conducted to improve understanding of the information and support needs of women at risk for breast cancer after earlier treatment with mantle-field radiotherapy for Hodgkin's disease.

Method. A number of women survivors of adolescent Hodgkin's disease with high risk of developing breast cancer were discovered by chance. A multiple-case study approach, presenting the detailed accounts of 3 participants, has been used to represent the issues raised by a wider subset of 15 Hodgkin's disease survivors. These women were participants in a larger qualitative study of 50 long-term survivors of adolescent cancer. They were interviewed in depth either face to face or via the telephone. Data were analyzed using methods of data reduction, display, and conclusion drawing. Three case studies were then purposively selected to illustrate key themes in the wider dataset. Two of these women developed breast cancer; one did not. One of the women had children; 2 others did not.

Results. Discovering that these survivors of one form of cancer were now at high risk of developing another form of cancer was a great shock to the patients. When these patients discovered their risk for late-effect breast cancer, particularly via the media, they were particularly upset. Reliable information was difficult to locate, and the support needs of the women were not met by medical services. The impact of the new risk was exacerbated by the earlier cancer experience. These patients' previous experiences with cancer treatment made them feel especially vulnerable, fearful of pain, worried about the very need for additional medical care and interaction with the healthcare system. They had a low level of trust that clinicians would tell them what they needed and provide adequate care.

Conclusion. Trustworthy Information on the risk for late effects to cancer survivors is not easy to access. When the risk of a treatment-related malignancy is identified, there must be a reliable way of informing both patients at risk and primary healthcare physicians, who then need to take the cancer history of the patient into account and its ongoing effect on their emotional vulnerability.

Viewpoint

This seems like a straightforward conclusion -- people with cancer need to be told their risks. However, the risk for breast cancer was not known at the time that mantle-field radiotherapy was originally provided. So, the problem really is how do you provide long-term follow-up to patients? How do you get information about long-term risks to primary care clinicians who may be seeing these patients and not realizing that they are at risk?

Today, one of the challenges that we have as healthcare providers is how we stay abreast of the research that affects our practice. Rene Fox, a medical sociologist, wrote over 30 years ago about how healthcare providers practice with uncertainty. We have challenges in providing healthcare, because we are uncertain of what is known about some specific areas of healthcare; we are also uncertain about our own mastery of what is known. This uncertainty can only increase with the explosion of information available to clinicians. How do we learn what is relevant to our practice? How does good information diffuse into clinical practice? How fast does the accepted standard of care change? These are basic questions that each honest clinician must answer for himself.

Abstract

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