As you may know, I am a 14-year leukemia survivor and delighted to take no medication and live a full life every day. Because of the many interviews I do with experts it has hit home that I am at higher risk for other cancers, very late effects of the powerful medicines I took in 2000, and, of course, a recurrence of my leukemia. I have become an informed survivor. But I have not been part of one of the few, but increasing, cancer “survivorship” programs. I’ll change that! Participating in one can save your life. That hit home to me in the live webcast we produced with folks from the “REACH for Survivorship” program at Vanderbilt Medical Center in Nashville.
Caroline Hale, a 22 year old who survived non-Hodgkin’s lymphoma; Dr. David Carbone, a leading cancer researcher who, 10 years ago, diagnosed a malignant mass in his chest himself (!), and my Seattle friend Dr. Debra Friedman, who was recruited to Vanderbilt, and now leads their new, and very comprehensive survivorship program. She’s a dynamo!
As Dr. Carbone, a medical oncologist, pointed out it grieved him when long-term cancer survivors came to him with terminal conditions that could have been prevented if only their primary care doctor had been knowledgeable about the early signs of conditions that were unique to them as survivors. Heart problems in women, for example, who had been treated with Adriamycin for breast cancer. Lung issues in young men who had had radiation years before.
Basic to Vanderbilt’s survivorship program is a personalized approach that looks at all the treatments a cancer patient has received (whether at Vanderbilt or anywhere else), considers the side effects, the late effects (even 10-20 years later!), and a host of other issues, and then develops a “survivorship care plan” that is shared with the patient and their other doctors, especially their primary care doctor. It can be life saving because symptoms in a younger person, for example, that might be a simple infection and treated with an antibiotic could be a warning sign of something more serious in a cancer survivor. Everyone associated with a cancer survivor needs to be on the lookout for this. And then there are the psychological issues, the relationship issues, the employment and insurance issues. Vanderbilt’s new program and sister programs at a few leading centers around the country address all this.
With 12 million cancer survivors and, hopefully, with that number growing, this is the kind of “whole person” and preventative approach we deserve. If you live near Nashville and are a cancer survivor – even treated years ago – you should consider a visit to this program. If you are near another big university cancer center, ask if they have one or check with the Lance Armstrong Foundation. Participating in such a program and advocating for one at a center near you, can have an impact on you and others who have survived cancer.
Cancer Survivorship is something to celebrate, but the cancer and the medicines have also changed us. We need to acknowledge that change, work with survivorship experts, and have ongoing discussions with all of our other doctors to ensure our special needs are noted and met for longer lives where we can enjoy every day.
Survivorship: an important and happy part of cancer care today with programs that we hope will proliferate across America.
Patient Power: Online Video & Audio Interviews for Patients
Andrew's Blog: Leukemia Survivor