In one of the most interesting presentations at the recent San Antonio Breast Cancer Symposium, physicians and other attendees heard from a researcher who has spent thirty years studying issues related to the measurement of quality of life for cancer patients and how it can be improved. Dr. Lesley Fallowfield, Director of Psychosocial Oncology at Brighton & Sussex Medical School, spoke about what has and has not changed in the treatment of psychosocial and survivorship issues in breast cancer.
Possibly the biggest change in this area over the last thirty years is that there is now much more support available to patients, largely through a wide variety of formal and informal support groups and online and other sources of information. Dr. Fallowfield noted, however, that these resources “fill a void in the absence of anything more formal”.
The issues that most affect quality of life for breast cancer patients have changed somewhat over the years. These trends reflect changes in treatment of breast cancer and in the management of side effects.
Top quality of life issues for breast cancer patients today include:
- Anxiety. Anxiety and depression are still very common, with about 30 percent of those treated for breast cancer experiencing one or both of these issues. Dr. Fallowfield pointed out that “many women with breast cancer confront continual, real threats so anxiety is neither irrational nor inappropriate.” Treatment can be with medicines or a variety of non-pharmacological interventions. She stressed the importance of looking at the evidence in recommending non-pharmacological interventions, particularly whether there are trials that show that these interventions help. For example, a recent randomized clinical trial showed benefits from mindfulness-based stress reduction.
- Fatigue. Fatigue has replaced nausea and vomiting as the biggest post-treatment physical problem, and “many women report a constant, enervating, unremitting fatigue that will last for years.” There are probably a variety of causes for this. Studies show that exercise helps in improving both mood and fatigue, and care providers need to make sure that patients have access to this information.
- Economic burden. There has been much publicity surrounding the high costs of treatment but patients and their families have many other costs, including loss of income from not being able to return to work.
- Inadequate communication and information. Breast cancer is no longer a simple disease to explain. Patients are in emotional turmoil while trying to understand new language and complex concepts, and unmet information needs increase anxiety. Communication on the part of health care professionals is critical. There are many good web-based and printed information sources and decision aids and these need to be provided to patients as part of the treatment process. Studies have shown that greater knowledge leads to more accurate risk perceptions, greater comfort with decisions, and greater patient participation in decision-making.
Dr. Fallowfield spoke at length about quality of life issues for patients with metastatic breast cancer, stating “we have neglected badly survivorship issues in metastatic disease.” She highlighted a number of prominent issues that patients experience including these:
- Difficulty talking to others/denying severity of illness to close friends and relatives.
- Shock, isolation and loss of control.
- Frequent bone metastases and often inadequate treatment of pain from these.
- Problems with IV drug infusion and preferences for treatments that can be given orally or by injection.
To sum up her response to the question “how are we doing?”, Dr. Fallowfield noted there is a growing consensus that psychosocial care should be integrated into routine care. But she stressed that the improvements so far have been mainly for early stage breast cancer and not for metastatic breast cancer.
Here was her prescription for what is still needed:
- Good, consistent communication and provision of timely, accurate and understandable information.
- Access by all to the best treatments and methods of administration.
- Systematic monitoring of side effects so that evidence-based intervention can be given as early as possible.
- Integrative oncology (which utilizes non-pharmacological approaches in addition to conventional treatment strategies).
- Survivorship care plans tailored to individual needs.
Finally, Dr. Fallowfield stressed that patients’ needs in quality of life support are not all the same. It is critically important to tailor survivorship plans to the specific needs that patients have, and to ensure that management of those needs is based on sound evidence. “We need to target what we know works on those that need it most,” she concluded.
Dr. Fallowfield’s 32-minute talk, and her slides, are available on the San Antonio Breast Cancer Symposium’s website (choose SABCS on Demand, Browse by Presenters). If you’re interested in a deeper review of quality of life issues this is a good resource. She talked about many more of the issues than I’ve been able to summarize in this short article.
San Antonio Breast Cancer Symposium 2013: What Did We Learn?
Photo credit: LoloStock via Shutterstock
If I could have a wish list of improvements, it would include an assistant to help connect patients with relevant organizations of support; treatment that is highly effective and doesn’t destroy the body, exercise programs being part of treatment, and a pouring of research into both understanding the causes of and actually killing the cancers. Oh, and for the anxiety – prescribed vacations with sun and beach, since this is a wish list!
Maybe these are some of the changes we’ll see in the next 20 years. I hope so. ~Catherine
What a great wish list, Catherine. I really hope too that these are some of the changes we’ll see, and what a difference it would make! All excellent points. I especially the love the one of “pouring of research into both understanding the causes of and actually killing the cancers”. And of course the prescribed vacations with sun and beach! Thanks so much for commenting.
When you first go through treatment, you believe, and they encourage you to believe, go through this year and you will have your life back. Nothing prepares you for stuff like ongoing fatigue, range of motion problems and lymphedema, skin and muscle tightness from radiation, and neuropathy from chemo. These things are mentioned, but downplayed as rare. Some people get their old life back, but far too many of us never will.
They also make hormonal treatments sound like just a little aching and a few hot flashes.
Yes, even those of us who metastasize are surviving longer. Because I am the third generation in a row to get breast cancer, I am very aware and thankful survival is longer. There used to be only months rather than years after a metastatic diagnosis. I watched it. But, on the flip side, the women in previous generations who did not metastasize, actually had better post-cancer quality of life because they went through so much less treatment.
Quality of life issues need to be faced by the medical community, by researchers frankly and honestly. They are real. Often they are downplayed. I am thankful for progress in survival, but life should be more than mere survival. We should be able to expect not just to live, but to live well.
Elizabeth, I hope that we will begin to see much more attention being paid to these issues by researchers and the medical profession. I think there has been some progress but we have a long way to go. You make a really interesting point about women in previous generations who did not metastasize actually having better post-cancer quality of life because they went through so much less treatment. I hadn’t thought about it quite that way before, and that really highlights how toxic standard breast cancer treatments today are – the hoped-for, targeted, much less toxic therapies just aren’t the reality yet today. Many thanks for sharing your insights on this.
Thanks so much for writing this important post. I am not surprised at the findings and it is great to see it so well- articulated here.
Thanks, Marie. It was nice to see this important topic receiving the level of attention it did, in a plenary session lecture, at San Antonio.
Reblogged this on Journeying Beyond Breast Cancer and commented:
Very well-articulated with link to a presentation by Dr. Lesley Fallowfield, Director of Psychosocial Oncology at Brighton & Sussex Medical School.
Life after cancer is never the same .. It changes so many aspects of your life both physical and mental… That someone is researching this is good news.. Surviving survivorship can be a challenge in itself …..
Yes, there are so many issues – some perhaps better understood and addressed than others. I like the fact that there seems to be more attention on the need for a systematic approach tailored to the individual. Thanks very much for commenting.
Thank you so much!
Excellent post. It’s validating to all to see these issues addressed.
Thanks, Eileen. It’s the first time I’d seen so many of the issues and related research pulled together in one presentation. It’s encouraging to see this kind of focus on survivorship issues.
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