Survivorship programs (where are they?)


I spent last weekend with 130 nurses and women cancer survivors at Lakeway Spa in Austin, Texas, for the Life Beyond Cancer retreat put on by the US Oncology Foundation. This is one of those wonderful events where women and nurses from across the country come together to look at the psychosocial issues of living with and serving those who have cancer. Those attending are taking copious notes to take home to their communities around such issues as planning for survivorship, how to find happiness in the fear of chronic cancer, nutrition, facing fear of recurrence, family issues, women and sex, end of life, and lots more. At the same time a wonderful assortment of wellness activities were offered. As a long time survivor I have been attending and speaking at gatherings such as this for a number of years and am constantly reminded of the courage and hope of these women and those who love them as they sort out how to integrate cancer into their lives. Our partners in this, as always, are oncology nurses, the amazing, magical men and women who could have chosen a much easier career path but instead spend their lives being there for us. Over the years, I have been so excited to see the growing awareness that cancer is a dual journey of medical and emotional. The professionals in these fields have grown in numbers and professionalism. At one point while speaking, I asked the audience of survivors how many had received any survivorship information from their own professionals at home where they were treated. I was appalled at how few raised their hands. The issues we are talking about are well known to be a critical part of the cancer journey. The report Lost in Transition: From Cancer Patient to Cancer Survivor, which came out in 2006, provided the research (which has grown significantly since then) to support the recommendation that survivorship be seen as a distinct phase of the cancer experience. So what's going on. Everyone knows survivorship care plans and emotional and social support are critical to healing, but it's not being done. Well, it will surprise no one that the answer is money. Most insurance doesn't pay for psychosocial support and most cancer providers can't support it. Other cancer providers say that their one or two support groups provide what's needed when often the patients don't even know their provider offers any kind of support.This means that most programs that address survivorship are community based and supported by staffing paid for by fundraisers that take a phenomenal amount of energy to support – and in the recession it becomes even more difficult. Many of the women here are leaving to go home with a new dedication and determination to grow a survivorship programs in their communities – hopefully engaging their cancer providers in the task. This has been a weekend of healing and hope for those present. The assembled women represent every part of the survivor communities from the newly diagnosed, to those in treatment and those who have finished treatment. There are also a number of women living with chronic cancer, one of the new categories of survivor brought about by the improvements in treatment. Their needs for emotional and social support are unique and challenging and must be addressed. As a survivor diagnosed in 1986, I have watched the growth of awareness and information around the need for healing. When I finished my last chemo, there was no understanding of the fear that would hit within hours. They disconnected the I.V. and I left. "Who was watching me now?" I struggled alone to understand the fear that engulfed me as I tried to regain the joy of raising my daughter -- while wondering if I would be around to see her start preschool. There were no support groups, and I felt like the only young woman in the country who had breast cancer. I was a mess. It wasn't until three years after treatment ended when I joined a support group in my doctor's office that I began to understand what I had been through – and how little help I had been given to understand and cope with the new person emerging from cancer. I am seeing the same awareness this weekend in the faces of the women here. I know that next week, they will return to their homes armed with knowledge that they will spread to their support groups and cancer providers. My hope is that in the future these gatherings will be a place where we can all compare our local survivorship programs and take home ways to improve on what is already in operation. That day will come, but we have to demand it.

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