Joan Venticinque, Breast Cancer Survivor
I met fellow breast cancer survivors and PAMF Patient-Focused Cancer Care Committee members Susie Brain and Kingsley Jack at the Lance Armstrong Foundation's Living Well Program at the YMCA, a joint program sponsored by Stanford University and YMCA for cancer patients reconditioning after their treatment. We became friends and started talking about our experiences -– the good, bad and ugly -– and what we thought breast cancer patients needed.
Because of this new connection and ongoing discussions on survivorship, I became more involved in patient advocacy. I attended the Lance Armstrong Foundation's first LIVESTRONG Summit in 2006, where they brought together 700 cancer patients, caregivers and health care professionals to talk about what was working for cancer patients and what was not. We spent another day brainstorming about solutions to those problems. They asked us to come up with a personal action plan when we came back to our own communities.
This encouraged me to be more aggressive about pushing cancer survivorship programs. I started talking to Kingsley and Susie about it, and when Kingsley told us that PAMF was starting a survivorship program, we jumped at the invitation to join the Patient-Focused Cancer Care Committee.
Although I do receive some medical care at PAMF, my cancer treatment took place elsewhere. So, I bring another cancer patient perspective and experience to the committee. I also volunteer at Breast Cancer Connections in Palo Alto and can contribute that patient perspective. All cancer patients have the same issues and problems, and I'm not biased one way or the other to different medical groups or hospitals, which I think is valuable.
PAMF is so inclusive that it's been refreshing to work with them. It's been really fulfilling to be able to help the organization and have my voice heard here. I think that's the real value of having patients on the committee; they really do listen to us!
I've met with the Lance Armstrong Foundation's LIVESTRONG Survivorship Program and staff at the University of California, Los Angeles (UCLA) in order to learn more about their survivorship programs. After researching other leading survivorship programs, it's clear that PAMF is way ahead of other health care organizations and hospitals in the Bay Area with its survivorship program.
PAMF's survivorship program is unique because it provides more patient-centered care than a lot of other places. I know "patient-centered" is a buzzword that is often used in the medical community right now, but PAMF truly is doing it as part of its cancer care. They're actually thinking about the patient and not just the diagnosis and treatment. PAMF keeps in touch with patients and makes sure that they really understand the long-term effects of their cancer treatment and how to navigate life as survivors.
As patients on the committee, we can tell PAMF what it's like to feel lost after cancer treatment is over. We say, "You're not OK just because you're done with your surgery, radiation and chemotherapy, and then go live your life." It's actually at the end of treatment that some of issues really first surface for patients. This survivorship program is trying to address these concerns. I don't think they would have thought about that part of cancer treatment without patients on the committee -– unless, of course, they've been through it as patients themselves.
Kingsley, Susie and I participate in meetings on cancer survivorship in the community and at local hospitals. Recently, we participated on a panel at a hospital where many of the doctors did not know what survivorship meant. After the three of us gave our talks, most of the physicians came up to us and said they had never realized the full impact of cancer treatment on patients.
One of them even said, "Thank you for coming because I forgot that not only am I a doctor, but I'm also supposed to be a healer. You were the hit of the meeting!" That was amazing to me. I felt like shouting, "Yeah!" Sometimes there is such a disconnect between the physicians and patients. That's why hearing it from the patient is so important.
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Joan Venticinque, breast cancer survivor and member of PAMF's Patient-Focused Cancer Care Committee