A recent commentary by eminent researchers Lesley Fallowfield and Valerie Jenkins from the UK note that improvement in breast cancer treatments and outcomes “have not led to similar benefits in the psychosocial, functional and sexual-well being of women.” They note there has been far less research in metastatic breast cancer compared to early disease, which perhaps explains why so many women with advanced breast cancer often feel neglected or left out of the picture. This is certainly how many of the women in our group/service feel. The authors conclude that any improvements at enhancing survivorship have been seen mainly in early breast cancer, not metastatic breast cancer, and that this needs to be addressed. We can only agree.
The problems reported in one study include “difficulty talking to others… shock, isolation and a loss of control”. Additional problems include pain and fatigue, inability to work, frequent medical appointments which cause emotional strain and the distressing impact on families.
The authors propose individualized psychosocial care adapted to the varying need of individuals and that resources should be focused on those at greatest risk of psychosocial dysfunction which would compromise survivorship.
The full article can be found at JNCI Journal National Cancer Institute (2015) 107(1):dju335 doi:10.1093/jnci/dju335 First published online November 2014.
Managing Paperwork
Keep a history of your illness. Include dates of scans and results, as you will be asked these dates often. Ask your oncologist to explain what the results of investigations and tests mean.
