A new study from a team of Stanford University School of Medicine researchers led by David Spiegel, MD, shows that participating in support groups doesn't extend the lives of women with metastatic breast cancer. The results differ from oft-cited previous findings by Spiegel that showed group psychotherapy extended survival time.
This study contradicts an earlier experiment done by Dr. Spiegel in 1989 which did reveal that the survival of similar patients was extended by joining a support group. His comments regarding the disappointing lack of a time benefit from state-of-the-art group therapy are the most important part of this story:
Spiegel said that despite the overall findings on survival, it remains "very clear" that support groups provide great benefits to cancer patients and should be an important part of treatment. "I've never told my patients to join a support group because it makes you live longer - I've said to do it because it helps you to live better," he said.
This is exactly what I say to my patients. No scientist can predict with complete accuracy how long a woman can live with metastatic breast cancer. For every patient who dies all too quickly after her diagnosis there is one who carries on for months, even years. Whether the fight to live a normal life is rewarded with a lengthy "illness," if one wishes to call it that, or a just a brief struggle, one of our responsibilities as oncologists is to reduce suffering, to do everything in our power to vanquish it, by any means, at any time of the day or night, no matter where we might be lollygagging about when we get the call from someone in need. Encouraging our patients to join one of the hundreds of thoughtful, respectful breast cancer support groups found throughout the country is the least we can do for those who may benefit from knowing that there are others out there who understand what it really means to suffer with pain, or worry. No doctor, not even Hippocrates himself, can replace the role that these courageous people play in the life of the woman living with breast cancer.
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Studies have found that newly diagnosed cancer patients who turn to the Internet for health-related information about their cancer have an increased positive attitude about the treatments and outcome, take an active role in decisions regarding treatment, and see their relationship with the physician as one of partnership. They saw the Internet as a powerful tool that enhanced their decision-making ability. They didn't want to feel powerless or have to rely on the doctor to make all of the decisions.
You don't go to blogs or discussion boards for information per se, but rather for new ideas. Simply reading the comments is an excellent learning process. They are a way of sharing informatin and stimulating ideas. A great way to get new perspectives and information.
Newly diagnosed cancer patients who use the Internet to gather information about their disease have a more positive outlook and are more active participants in their treatment, according to a Temple University study published in the March 2006 issue of the Journal of Health Communication.
http://www.medicalnewstoday.com/medicalnews.php?newsid=38828
Well...I didn't think that meeting with a bunch of other women would add longevity to my days. But in the very least I can reach out to others who know what it is to walk in my shoes and don't expect me to "just get over it".
With all due respect to the doctor, my experience with a particualr support group has been less than stellar. You see, I had a horrid experience with the surgeon connected wtih said "support" group. I am not permtted to discuss my experience and if I even attempt to mention his name, the social worker who runs the group has a coronary. She would prefer that I disappear from the ether.
So much for "support", paid for by a grant from the Komen Foundation. Apparently, it's only support for those who have had a good experience.
Dee
Another Reference Documenting the Value of Support Groups -an Online Self-Help (i.e., member-run) Support Group...
Upon joining a group and 6 months later, new members (N = 114) to breast cancer bulletin boards completed measures of depression (CES-D), growth (PTGI) and psychosocial wellbeing (FACT-B). Improvement was statistically significant on all three measures. This serves as a first validation of Internet bulletin boards as a source of support and help for breast cancer patients. These boards are of particular interest because they are free, accessible and support comes from peers and not from professional facilitators. - Lieberman, M. A., & Goldstein, B. A. "Self-help on-line: An outcome evaluation of breast cancer bulletin boards." Journal of Health Psychology, 10, 855?862, (2005).
- Ed