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Focus on how well patients live instead of how long

BY KATHY LATOUR | DECEMBER 16, 2013

Kathy LaTour blog image

Mea Culpa--I said in my first blog that there were no podium presentations on survivorship at the San Antonio Breast Cancer Symposium. Oops. I did read the program thoroughly but managed to miss the one session on survivorship on Friday morning by Lesley Fallowfield, a professor of psycho-oncology and director of Sussex Health Outcomes Research & Education in Cancer at Brighton and Sussex Medical School at the University of Sussex in England.

The content of the presentation was an overview of the issues of survivors, i.e. fatigue, lymphedema, night sweats, cognitive issues, hormonal issues, economic issues, and the overall distress of coping. One slide said there is new attention paid to how well patients live in addition to how long they live. She also confirmed that integrative therapies do work, including yoga, cognitive behavior therapy, aroma therapy and massage, visualization, expressive writing, and art and music therapy.

Perhaps the most pointed idea in those slides was information on mindfulness-based stress reduction. This issue has been one that I have touted for years, ever since Barbara Anderson's study with breast cancer survivors and mindfulness-based stress reduction. In her Stress and Immunity Breast Cancer Project, she showed that a psychological intervention provided to newly diagnosed breast cancer patients reduced the risk for recurrence and death from breast cancer.

Fallowfield also noted that most of the changes in survivorship have been in early-stage breast cancer, not metastatic breast cancer.

Fallowfield told me she was really surprised by how many physicians came to the talk and stopped her later to chat. "The hall was virtually full, but many people stopped me throughout the day to either congratulate me, ask for further contact or invite me to speak in their country." She had expected patient advocates but found it heartening to find so many interested oncologists.

Let's hope they take it home and apply it to their patients.

How many of you are in treatment where there is a strong survivorship program? Let me know.

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COMMENTS

During my chemo treatment, I experienced severe leg swelling in both legs. My right leg would get larger than the other. Nothing seemed to work to reduce them and I looked forward to the completion so that the swelling would be done with. Well it has been more than 30 days since my last treatment and the swelling persists. It is accompanied by severe itching and dry, scaly skin. My scratching has left me with two toned skin. Any recommendations?
- Posted by Saundra Griffith 12/17/13 6:48 PM

Just had my first follow up visit with my oncologist after chemo and radiation were done. Not a word about a survivorship program.
- Posted by Elizabeth Shannon 12/18/13 8:24 AM

I am grateful to see a session, even one, devoted to quality of life issues. There was little acknowledgement of this when I went through treatment 4+ years ago. As my neuropathy got worse, the oncologist and the nursing supervisor just said that everyone got it and I would get better. The pain has gotten somewhat better but I am still in pain every day, and some days I feel so worn down by it, it's hardly a life worth living. How can we get oncologists to seriously consider quality of life and know when to put on the brakes? How can I get involved in helping make this happen?
- Posted by Mary Robinson 12/19/13 2:00 PM

It is good to hear so many oncologists were expressing an interest. I'm glad for that. There are some excellent survivorship programs in my area, though my oncologist has never referred me to one. ~Catherine
- Posted by FacingCancer.ca 12/23/13 2:21 AM

I've had breast cancer treatments twice. Once was radiation through a tube in one breast. Then I got HerII positive and had a double mastectomy and a year of chemo. I'm currently on an aromatase inhibitor. In the middle of chemo I was in a car accident and my husband was killed. I often wonder if I had known ahead of time what my life would be like after chemo, if I would have done the chemo.
Prior to chemo I did triathalons indoors, and was on the master's swim team. Now, due to neuropathy, joint and bone pain, I'm lucky if I swim once a month. Obviously I am not able to swim as I once was. When I mention this, I am often told it is because I'm older now. I don't agree. I used to hike two or three miles with my dog, each week. Now, I rarely walk with the dog because my bones and feet hurt. I am weak. I continue to ride horseback once a week. However, at the end of an hour of riding, I can barely drag myself off the horse. I am not strong. I work with my personal trainer, but I can see that my exercises are way below my pre cancer level. Yes, I mentally whip myself up to press on, but my cancer treatments have taken a lot out of me. I am on an aromatase inhibitor, but otherwise I've been out of treatment for over a year now. I find my quality of life very discouraging. In fact, I have declined any checkups other than once per year. They are too stressful and should I find again that I have cancer, I very much doubt that I would do anything about it. A further diagnosis would just disturb my peace of mind for whatever days I have left.
- Posted by Amanda Paralee 1/3/14 6:51 AM

After going thru a 2nd primary breast CA, 19 years apart, I still find the lack of any follow up care or support to be frustratingly lacking. Once you've finished chemo, everything is left to your family physician, who doesn't know how to handle your issues. You bounce around from one specialist to another, hoping for some answers. The stress and pain are constant, especially trying to work full-time; it doesn't give you much hope.
- Posted by CB 1/6/14 6:40 PM

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