By Rebecca Ephraim, R.D., C.C.N.
“I was pissed! I don’t want to go through it again. But then I just said to myself, OK, I’ll deal with it.”
Gulp. I didn’t know what I expected to hear from Ann Fonfa, the widely known patient advocate who’s become a model for thousands of women looking for direction once they’ve been diagnosed with breast cancer. But it wasn’t this.
Fonfa maintains a highly regarded website that offers voluminous resource information for complementary and alternative therapies (see Info Box). Importantly, her site serves breast cancer patients who want to straddle the worlds of conventional treatment and complementary and alternative medicine (CAM) but often find that their doctors offer little knowledge or inclination to combine the approaches.
From 1993 until late 2001, Fonfa, 57, grappled with recurring tumors on the chest wall of her left breast. Although she had numerous surgeries, she rejected chemotherapy and radiation and opted for a mélange of complementary therapies that purported cancer-cell killing properties. Among them: maitake mushroom extract, high-dose vitamins, coffee enemas, and Chinese herbs.
It was a long slog, but in late 2001, she got the pronouncement: cancer free.
Although her strength and resilience for plodding along all those years earned her a loyal following, I certainly imagined that it was the “I beat cancer” status that put her over the top for being the “go to” resource.
And now, here in our phone interview in late May, she’s telling me that just a few days before she believes she discovered a new lump and has started CAM treatments for it. She got an MRI and is waiting for confirmation. In a calm and measured tone, Fonfa says, “This goes under the heading of ‘It is never over with breast cancer.’ ”
My list of suitable questions suddenly turns irrelevant. And I, who have never had anything worse than a case of ferocious flu, faltered in what to say in response. “I’m so sorry,” came to mind but her optimism beat me to it.
“I don’t care to focus on being fearful. It’s just not beneficial for me,” she continues with a confidence that’s stunning given what she’s just announced. “I’m a very upbeat person, anyway. My perspective is that I can go forward and work with finding ways to be healthy again.”
Upon consulting with her Chinese herbalist, Fonfa started herbal plasters to her chest, special herbal teas, modified citrus pectin, an immune booster called Immpower and a fermented wheat product from Hungary that she says has good studies showing it helps kill cancer cells.
However, she emphasizes that
each woman needs to intelligently decide — with the help of her practitioner(s) — what the best approaches are for her. “It’s a heavy responsibility to have someone decide that I have the answers because it’s not very clear that there are specific answers. We’re all a little bit different,” she says.
PICK A PATH
Fonfa packs her website with information
from both conventional and CAM scientific conferences (which she
attends regularly), peer-reviewed research, and perspectives from other
cancer patients who have tried various therapies and reported on their
success. She weaves it together with a let’s-talk-over-tea narrative.
She quotes liberally from the writings and reports of authorities in the field, including Ralph Moss, Ph.D., who’s also a patient advocate, author, and recognized cancer treatment expert specializing in evaluating the claims of various cancer treatments and publishing them in his “Moss Reports.”
He agrees with Fonfa that breast cancer is one of the more complicated cancers. “It’s hard to speak of breast cancer in one breath as a totality,” he cautions. “It really requires some serious study on the part of the person who has been diagnosed.” To that end, he offers his “Moss Reports” (cost of $297 each) on specific cancers to help guide a patient to appropriate treatments that include complementary and alternative approaches (there are also others who do this, see Info Box).
He believes, from his research, that surgery is still the main line of defense against early-stage breast cancer but speaks optimistically of adjunctive treatment options that aren’t widely on the radar screen, such as heat therapy (known as hyperthermia), mistletoe (widely used in Europe), and extracts from various Asian mushrooms (including the maitake extracts that Fonfa has used).
He questions the categorical use of radiation and chemotherapy, although he stops far from rejecting their use. But he and Fonfa both criticize the side effects of the treatments and agree that, if chemo or radiation is chosen, their side effects can be moderated with complementary and alternative modalities.
Whatever the path, Fonfa says a woman needs to empower herself with a program that feels right and then stick to it. “What everyone has to do is look at the variety of possibilities — and that’s what I call them — possibilities. Many are listed on our site and you go through them and see what appeals to you. You have to create a program for yourself that you’ll follow and you have to follow it! No one gets well by doing it half-ass.”
Regardless, she suggests that there is a common thread that should run through one’s treatment, which includes excellent nutrition (Fonfa is vegan), dietary supplements, exercise, and a detoxification program. Combine this with a mind-body-spirit connection, “whatever that is,” she adds. “I love to garden.”
THE ROADBLOCK TO CAM
roadblock to pursuing CAM therapies, which can moderate symptoms and
contribute to healing, are the conventional M.D.s — oncologists who are,
by and large, the gatekeepers of treatment.
Moss, having recently attended the conference of the American Society of Clinical Oncologists, frames the challenge for a cancer patient who wants to explore alternative therapies. “Certainly we’re seeing less overt hostility coming from the conventional medical field … it’s now more a matter of neglect rather than active hostile opposition.”
Naturopathic physician Dan Labriola suggests in his book, Complementary Cancer Therapies that you choose your doctors carefully. “Most people spend more time shopping for a new car than they do picking their doctors,” Dr. Labriola writes. “Selecting providers who are willing and able to work together to provide the kind of care that you want is one of the most significant steps in your battle with cancer as well as essential to your general health and well-being.”
Ann Fonfa is a fierce advocate of finding a practitioner who will embrace a patient’s exploration of CAM therapies. In fact, she mentions a new organization: the Society for Integrative Oncology.
However, she will have no need for it at this time — a few days after our interview I received this short email:
Dear Rebecca, A minute ago I got a copy of the report from an MRI I took. Apparently I do NOT have a new tumor. My husband is in tears so I must go.
Rebecca Ephraim, a registered dietitian and certified clinical nutritionist, is the national health editor for Dragonfly Media. Contact her at [click to e-mail].
Nancy Evans contributed to this story.
Where To Go For More Info
Ann Fonfa named her nonprofit website www.annieappleseedproject.org, with Johnny Appleseed in mind because she’s on a mission to plant seeds — seeds of information that offer hope to people with cancer.
Ralph Moss’s website: www.ralphmoss.com (he also offers a free E-newsletter)
CHECK THESE OUT TOO
Can Help referrals: www.Canhelp.com, (800) 565-1732
Commonweal: www.Commonweal.org, (415) 868-0970
People Against Cancer: www.peopleagainstcancer.com, (515) 972-4444
Smith Farm Center for Healing Arts: www.smithfarm.com, (202) 483-8600
Society for Integrative Oncology: www.integrativeonc.org, (856) 423-3201
From an article in the July 2005 edition of ConsciousChoice.com