Help Wanted: Medical Planning Project

The days and weeks just after diagnosis can be some of the most confusing and terrifying. There’s so much to learn, so many feelings, so many reactions, so many appointments!

You don’t have to spend much time on cancer websites and message boards to learn that it’s important to bring someone along with you to those myriad medical meetings and procedures.

Alas, there is far, far less help out there when it comes to planning for those medical appointments. How do you decide what’s most important to you as you face treatment? What questions do you want to ask your doctor? How do you identify the key decision points?

At UCSF, I was blessed to be able to take advantage of the pioneering Breast Cancer Decision Services program. The medical center had a recent pre-med graduate call me to discuss my priorities and concerns. She came to my major appointments, taped them, and then provided me with a CD recording and a summary of the information discussed and the decisions that I needed to make. I don’t know what I would have done without Decision Services, and I don’t know why this sort of service isn’t standard.

But it’s not.

Studies are just beginning to show that patients who are more involved in medical decision-making have better outcomes, both medically and psychologically, according to Jeff Belkora, Ph.D, the director of UCSF’s Decision Services. Belkora and the leaders of the UCSF program are helping to start a similar program at Dartmouth University in New Hampshire. The Informed Medical Decision Making Foundation
is funding shared decision making initiatives in Maine, Massachusetts, Iowa, Oregon and several other states. The foundation’s website also offers decision aids for various conditions, including breast cancer.

Yet this sort of doctor-patient-facilitator partnership remains far from common. A couple of Stanford University grads are working to solve this problem by creating an on-line tool that guides breast cancer patients and helps them to prepare for major medical appointments, identifying their priorities and their questions. The program, AVVA, is still in development. But breast cancer patients in the San Francisco and Boston areas can sign up to help work the kinks out of the program so that it can be released to the general public. Just send an email to patients@avvahealth.com.

If I were still in active treatment, and if I wasn’t a UCSF patient, I’d do it in a heartbeat.

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About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
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