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Come together now

Author: Diana Price

When Jan Adrian, MSW , was diagnosed with breast cancer in 1989, she underwent surgery, chemotherapy, and radiation treatments—a course of action that she knew was necessary to target the physical aspect of the disease. But as a mental health professional who had spent years training other health care professionals about the importance of emotional wellness, Jan knew that she would need more. This desire to find resources that would address her diagnosis from a whole-person perspective, including her psychological and spiritual needs, led her to create the Cancer as a Turning Point: From Surviving to Thriving conference, a gathering of survivors, caregivers, and health professionals with the mission to “educate, inspire, celebrate, and connect all whose lives have been touched by cancer or any life-altering illness.”

Since founding the conference and Healing Journeys (healingjourneys.org), the nonprofit organization that supports the programs, Jan has seen how valuable these gatherings—which are free to patients—can be for those affected by a cancer diagnosis. “The comments we often receive from patients who attend our conference are that they feel less alone, less afraid, and more hopeful,” she says. Though many of the presentations—including lectures, music, dance, and theater—are helpful to those who attend, the real gift for many is the opportunity to find community and hope. “Meeting so many other patients who have gone through so much and are doing so well, [patients] get an object lesson showing them that cancer doesn’t have to be a death sentence but that it is a life sentence.”

Education and inspiration

Conferences like those presented by Healing Journeys are a welcome resource for cancer patients interested in creating community and, in some cases, learning more about complementary therapies to supplement the conventional treatment they receive. These events are staged on a small and large scale across the country and are hosted by private organizations, treatment centers, and advocacy groups interested in providing information and support.

Denise Matteo, from Vero Beach, Florida, is one of those who has benefitted from conferences that address a whole-person, integrative approach to cancer. Diagnosed with stage IV cancer of the maxillofacial in September 2008, Denise has been through nine extensive surgeries, chemotherapy, and radiation and has experienced a host of setbacks and complications. Still, the single mother of two is committed to retaining a positive outlook and has continually sought resources and support to help her on her journey. Recently, she attended the Annie Appleseed Project’s Fourth Evidence- Based Complementary & Alternative Cancer Conference after meeting conference founder Ann Fonfa (annieappleseedproject. org). Having already made major lifestyle changes—including a switch to organic foods—Denise found the information about complementary and alternative therapies and the community of the other patients and professionals very helpful. “I was very excited to attend,” she says, “and I’m so glad I did. I plan on attending as many as I can in the future.”

Linda McDonald, a three-time cancer survivor who attended the Annie Appleseed Project conference for the third time in 2011 and is now a board member for the organization, says that, for her, conferences provide a valuable opportunity to learn about resources and make connections that can be empowering in the face of a diagnosis. “I feel knowledge is power,” she says, “and we must be our own best advocate.” Linda’s commitment to education and advocacy has taken her to a wide variety of conferences and trainings, each one providing her with additional insight into her own diagnosis and the broader picture of conventional and integrative care. “I have gained much knowledge, and I want to pass it on to others,” she says. Conferences—and her many other advocacy activities—provide her an opportunity to do just that, and she hopes to continue to attend and to share all that she has learned.

Breast cancer survivor and patient advocate Jackie Sommers calls her experience at the Annie Appleseed Project conference “eye opening.” Having pursued only conventional therapies to that point during the 14 years she has been battling cancer, Jackie says she was inspired by the information about complementary care and by the support available at the conference. “I came away, in three short days, armed with information, newfound hope, and a connection to a caring community of attendees who epitomized the ‘glass half-full’ philosophy of cancer survivorship,” she says. “As a longtime patient in a roller-coaster existence battling the disease, I have often been frightened and overwhelmed. At this conference I acquired seedlings of knowledge as well as outreached helping hands to mitigate that fear.”

Considering attending a conference? Do your homework

The opportunity for personal growth and education that conferences highlighting complementary care provide is exciting for many patients. Jeffrey D. White, MD, director of the Office of Cancer Complementary and Alternative Medicine at the National Cancer Institute, says that, as with all information related to a diagnosis, patients who are considering attending a conference should do some research into the conference and especially into the specific therapies or treatments presented.

The key words in evaluating information from any source, he says, are background, bias, biology, and publication. First, patients should look at who is providing the information: “What background do they have on the topic, and how well does it qualify them to provide the information? This information may not be readily available, but it can be useful.” In addition, patients should consider each presenter’s qualifications. Just because someone has a PhD, Dr. White says, doesn’t necessarily mean that the degree is in the field in which they are presenting. Second, consider the affiliation of the person who is providing the information and what biases he or she might bring through that affiliation: “For example, a person who is employed by a company may well present information about the company’s product in the most favorable way.” Third, in this context, Dr. White says, patients should use the word biology to remind themselves to look into the scientific results that have been generated about a specific therapy: “What is the state of the science about a therapy, pro and con? Have any clinical trials been done? What were the results?” Finally, patients should ask where they could find the results of the published research related to specific therapies: “Are the results published in a peer-reviewed medical journal?”

An opportunity for growth

Patients like Jan, Denise, Linda, and Jackie provide a glimpse of what many cancer patients find beneficial about seeking information and support through conferences that draw likeminded survivors and health care professionals. Though not for everyone, these meetings can provide an opportunity for patients to expand their knowledge of complementary care and to connect with other patients and professionals who can offer welcome support.
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