Learning about the Impact of Arm Problems after Breast Cancer

By Dr. Roanne Thomas-MacLean

Last Updated: Jun 3, 2006
Articles & News : Articles : Lymphedema

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Roanne Thomas-MacLean, PhD, University of Saskatchewan
Tom Hack, Ph.D., University of Manitoba
Winkle Kwan, MD, British Columbia Cancer Agency
Baukje Miedema, PhD, Dalhousie University Family Medicine Teaching Unit
Sue Tatemichi, MD, Dalhousie University
Andrea Tilley, BScPT, MLD/CDT, Atlantic Health Sciences Corporation
Anna Towers, MD, McGill University
Kelly Chessie, PhD student, University of Saskatchewan

 

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As more and more woman are diagnosed and treated for breast cancer, we are becoming increasingly aware of different side effects and unintended outcomes from this treatment. For example, many women who have surgery, lymph node dissection and radiation, can experience long-term negative effects on their arm, shoulder or hand function, including restricted range of motion, pain, and lymphedema (or swelling from poor lymphatic drainage). These effects are referred to as “arm morbidity.”

While estimates as to the number of breast cancer survivors experiencing arm morbidity range from a low of 7% to a high of 80%, what is even less certain are the psychological and social effects of this pain, swelling or restricted motion. How does arm morbidity affect the daily lives of women?  Do affected woman change their family roles, leisure activities or work schedules to accommodate the disability and pain? How do women treat and manage these side effects? What triggers the pain, swelling, or restricted motion?

We have pulled together a multi-disciplinary research team to tackle these very issues.  Our team consists of: Tom Hack, a psychologist from Manitoba; Bo Miedema, a sociologist and Sue Tatemichi, a family physician, both from Dalhousie University; Andrea Tilley, a physiotherapist from Saint John; Winkle Kwan, an oncologist from Surrey, BC; Anna Towers, a family medicine specialist at McGill University; and myself, a sociologist at the University of Saskatchewan.

Together, we are completing a multi-site study, enrolling 1000 women from Fredericton, Saint John, Montreal, Winnipeg, and Surrey, all who have been treated for Stage I to III breast cancer. In addition to collecting disease and treatment information from their medical charts, we will interview the women four times (twice in person, twice by phone), at six month intervals. At each of these times, we will be assessing whether the women are experiencing any arm

morbidity and, if so, whether it is associated with any psychological or social impacts (e.g., limits to leisure activities, changes to family roles, altered work schedules, etcetera). Forty of these women will also participate in a more detailed interview, designed to collect more in-depth information about the impacts of their arm morbidity.

At the end of the study, we hope to be able to identify:

• The frequency of arm morbidity for female survivors of Stage I to III breast cancer treatment
• The course of this impairment
• Possible triggers of the morbidity
• Its psychosocial impacts, and
• How care and treatment varies from region to region

We started collecting data in January of 2005, and at present, we are a little more than one quarter of the way completed and have enrolled slightly more than 300 women. Preliminary analyses from 230 of these women indicate that most (90%) of the participating women have Stage I or II breast cancer. The most prevalent surgery has been partial mastectomy (75%), and the most common biopsy has been axillary dissection (60%). Radiation to the axilla is thought to be a potential risk factor for lymhedema, and approximately one in four (24%) of the women included in this preliminary analyses have had this treatment.

The average age of the women is 54.5 years, and many participants (40%) are 50 years or younger. Approximately 4 in 10 of the women have children living at home, and some 3 in 10 are single. These demographics may have implications for day-to-day impacts of arm morbidity, as this is a relatively young group, more likely to still be working outside the home and raising children. We predict that the impact of arm morbidity will be more significant than previous research has indicated.

Again, based only on preliminary analyses, as many as 59% of the women demonstrate limited range of motion in their arm, some 40% report pain, while 9% experience swelling. Approximately 4 in 10 women report a change in their paid work because of arm problems, while approximately 3 in 10 report having made changes to their leisure activities.

A potentially positive, albeit early, finding is that 11% of the women reported a

positive change in their relationship with their husbands or partners, although 8% reported a change for the worse, while the remainder reported no change in this relationship.  Conversely, 10% reported that their ability to care for their children has been negatively affected by their arm problems, as they now have a limited ability to play with or pick up children, or need assistance to care for children. Some 5%, however, reported that their relationship with children is better, as their children are more supportive and the family is working together.

As our study progresses, we will continue to examine what degrees and types of arm morbidity emerge and to what extent they affect the everyday lives of these women.

This research is supported by the Canadian Breast Cancer Research Alliance (CBCRA), the Canadian Institutes of Health Research (CIHR), the College of Graduate Studies and the Department of Sociology at the University of Saskatchewan, and the Saskatchewan Health Research Foundation (SHRF).

Editor's Note

Some of you may remember an article written by Dr. Roanne Thomas-MacLean, then living in New Brunswick, called Understanding Lymphedema After Breast Cancer that was published on the ABCN on May 1, 2004 . If not you can see the article at  Article .  Roanne was presenting a poster at Reasons for Hope in Montreal on May 8, 2006 where I had the opportunity to connect with her again.  Roanne has kindly provided us with a synopsis of the research she is currently working on.

Have comments about this article? We'd love to hear from you. Please email us at abcn@abcn.ca!