A Cancer Patient's Best Friend
(Nov/Dec 2004 article from Alternative Medicine magazine)
Getting a cancer diagnosis plunges you into a strange and frightening new world. What to do first? Which therapies to try? Happily, Ann Fonfa has been there and is ready to guide you through the possibilities.
By Peter Jaret
For more than a decade, she's been a familiar figure at cancer research conferences around the country--a small woman with wavy brown hair who might seem unremarkable except for the fierce intelligence of her gaze.
There she is, sitting a few rows from the front, scrupulously taking notes. When the time comes for questions, she's the first on her feet.
She speaks with a no-nonsense New York accent, asking the kinds of questions laypeople often have but don't get the opportunity to ask. Does that new approach work for everyone? Are there any unwanted side effects? What about people who are also using Chinese herbs? Or vitamins?
Will the new therapy be safe for them, more effective, less effective? Has anyone looked into that? And if not, why not?
Her name is Ann Fonfa, although she's better known as Annie Appleseed to the hundreds of thousands of people who visit her website, the Annie Appleseed Project (annieappleseedproject.org). (Now a non profit 501(c)3 corporation accepting donations)
She chose the name because, like Johnny Appleseed, she's on a mission to plant seeds--seeds of information that might offer hope to people with cancer. The site--"alternative and complementary medicine from a patient's perspective"--was launched in 1999 and has become one of the liveliest and most comprehensive Internet resources on unconventional options for cancer patients.
Today it receives almost 50,000 visits a month. (Ann's NOTE: as of the beginning 11/04 by the time the article was published, we were up to 65, 000 and on 11/24/04 we receive 71,000+ monhtly visitors!)
Fonfa describes herself as "a woman with breast cancer--and an attitude." Attitude is right. She's sharp-witted, disarmingly candid, easygoing, and friendly--and a ferocious advocate for people with cancer. She attends as many conferences as she can, often paying her own way, to gather information and post it on her website in sharp and incisive summaries.
"Ann goes to many meetings that others would find difficult even to comprehend. And she's unafraid to ask the really tough questions," says Ralph W. Moss, an authority on alternative cancer therapies and author of Cancer Therapy and Questioning Chemotherapy, among other books. "I love watching the faces of scientists at these meetings as they realize they're facing an expert patient who cannot be cowed by authority or technical jargon."
Fonfa's tenacity grew out of her own treatment odyssey, which began when she was diagnosed in 1993 at the age of 44. "I was like most people who learn they have cancer.
I didn't know the first thing about it," she says. "My doctor recommended surgery, and I said okay. The surgeon had an opening on Monday, and I said okay.
"It wasn't until after the operation, when my surgeon recommended radiation, that I began to realize I didn't have to do exactly what he said. I'd done a little reading by this time, and I'd discovered that a big study (NSABP B06) had just shown that radiation didn't make any difference in survival for stage I breast cancer like mine. So I decided not to do it.
"I was also wary when my oncologist recommended chemotherapy. I had an uncle who'd had chemo, and it made him miserable and didn't seem to do him much good. I was very chemically sensitive, so I thought maybe we could at least adjust the dose or something, but when I mentioned that to my oncologist, he didn't seem interested in my concerns. All he said was, 'Oh, that won't make any difference.' I realized I could have been anyone in room seven; they would have done chemo the same way."
That's when Fonfa began looking into alternatives, but she hit the same brick wall many cancer patients encounter. "There was no Internet back then, and it was hard to get information. I remember prowling used bookstores looking for anything I could get my hands on. I joined a support group for women with breast cancer, (and then started one for those interested in CAM with which) we invited experts to talk to us about things like acupuncture, Chinese herbs, and other approaches."
Eventually she began to travel to scientific meetings--"anywhere people were talking about alternatives"--and her stack of research grew.
Doing her best to sort through it all, she ended up trying a hodgepodge of things: She traveled with a group of women to Canada to take the experimental drug 714X. She went to Mexico to the Gerson clinic, which offers a therapy based on radical dietary changes and coffee enemas. She did herbal supplements, Chinese mushrooms, acupuncture, and high doses of vitamin A. And for years the tumors on her chest wall continued to recur.
Then, in 2001, she received the kind of news cancer patients dream of. An MRI of her chest wall found no trace of cancer. "The technician who was reading the scan actually asked me why I'd come in for the test," Fonfa says. "I had to explain that I had breast cancer. I remember her saying, 'Really?'"
It was the first time in eight years that there was no sign of the disease. And three years later, Fonfa is still cancer-free.
Many people given a clean bill of health might decide to forget about cancer and go on with their lives. Not Fonfa. If anything, she has become even more dedicated to the cause.
Nine years ago, she quit her job as sales rep for a company that produced business presentations, and now, from an office in Delray Beach, Florida, and with the financial support of her husband, she works full-time on this project.
"I'm convinced that some of the alternative approaches I used helped save my life," she says. "But it's still hard for most people to get good information on which ones to try." These days there's a lot more out there--on the web, in books and magazines, and from organizations like the NCI Office of Cancer Complementary and Alternative Medicine (see "Searching for Answers"). "But the quality of the information is all over the place," Fonfa says, so knowing which approaches work and are right for any particular type and stage of cancer presents a real challenge.
That's where Fonfa comes in. "If I can point people toward an approach that helps them, that's a pretty special thing to be able to do," she says. Alternative Medicine recently caught up with Fonfa at a conference to talk about how, exactly, she goes about fulfilling that generous mission.
Q: "Integrative care" is the new buzzword in cancer treatment. Is it getting easier for patients to combine conventional and alternative medicine?
A: There's a lot of talk lately about integrative medicine. Unfortunately, a lot of it's just that, talk. There's still a wide gap between the worlds of conventional and alternative medicine, and patients often find themselves trapped in between. If you ask your oncologist about Chinese mushrooms, you're not going to get very far. And alternative practitioners often don't know the first thing about conventional approaches.
Consider the example of antioxidant vitamins. Many cancer patients wonder if they should be taking them. Conventional doctors will tell you that you shouldn't if you're on chemotherapy because they may actually strengthen cancer cells. Alternative practitioners will tell you to take the antioxidants and forget the chemo. That's how far apart these folks are. Most of the time there simply isn't any data to help you decide. The researchers say, "We haven't done the studies yet." That's when the advocate in me jumps up and down. I understand yet. But what are they doing now?
Q: Where's the best place to turn for information?
A: Well, of course I have to plug my own website. From the start, my idea was to include something about almost any approach that cancer patients were likely to hear about. If something has been tested, we include research findings. But in some cases, with something very new, all we can do is list a clinic or a practitioner who offers it. We invite people to share their own experiences, so we include a lot of anecdotal evidence, too.
There are other good and useful sources of information on the Internet, of course. (See "Searching for Answers"). And I'd recommend any books on cancer by physican Joseph Pizzorno, naturopath Michael Murray, and herbalist James Duke.
Q: What advice can you offer on how to evaluate claims for alternative approaches?
A: I start by asking whether something has been studied in any kind of clinical trial, and what the results are. The best place to look for that kind of information is PubMed (pubmed.gov), a vast database of published medical findings that's quite easy to search.
If an approach hasn't already been tested in clinical trials, you can look to see if it's currently being tested or considered for one. That tells you that researchers think it's worthwhile enough to study. (See "Promising Cancer Treatments")
Unfortunately, very few alternative treatments are being studied in clinical trials, so the next step is to ask if a particular approach seems to make sense to you. I think there's good reason to believe that antioxidant vitamin therapy might be effective, for instance, because there's strong evidence that oxidation damages cells, weakens the immune system, and can even cause mutations that lead to cancer. So even if there aren't any definitive studies, the idea behind it is logical.
Another question to ask is who's making the claims. You have to be wary if it's someone who's selling a particular supplement or whatever--especially if it's a proprietary formula that's top secret. You can be much more confident with a practitioner who has studied an approach, has had good experience with other patients, and is open and willing to share all of his or her findings.
Q: Any tips on how to evaluate anecdotal evidence in cases where that's all there is to go on?
A: It's not easy. While I was at the Gerson clinic, for instance, one of my fellow patients died, but another improved dramatically. She had had tumors in her body that went away almost completely. Her legs had been affected, and within a week she was taking walks with her husband, which she hadn't been able to do for years. So which anecdote do you choose?
First, consider the source. Is it from someone you know and trust? Do they have the same kind of cancer you have? The same stage? Are they in the same overall health? In my own case, I was healthier than most of the people at the clinic, so I focused on how the approach seemed to be working for people more like me, whose cancer wasn't very advanced.
Of course, most conventional researchers dismiss anecdotal evidence entirely, although even mainstream medicine does use case studies. I think anecdotal evidence definitely has value. If you have a lot of people saying that something like acupuncture or Chinese mushrooms seems to help them, then that's the beginning of real evidence that something might work, that it's worth testing in some kind of clinical study to find out.
Q: What about cancer clinics that offer their own unique therapies? How do you evaluate the claims they make?
A: Again, it's important to ask whether the approach makes sense. Find out exactly what it includes. Some clinics will let you decide which parts of their approach you can follow, but others, especially some of the clinics in Germany, are very strict about what you can and can't do.
I invite people to describe their clinic experiences on our website, and it can be very helpful to read their descriptions to find out exactly what you're going to be in for--what the regimen consists of, how long you'll be there, and what it will cost (treatment is usually very expensive).
One of my entries, about the Gerson clinic, will tell you exactly how demanding that program can be. Here's what it says. "You are given a series of pills to take daily, starting at 8 a.m. with breakfast. These include pancreatic, niacin, thyroid and acidol/pepsin. At 10 a.m. you take thyroid medicine. At 11 a.m. you take liver pills. At 1 p.m., lunch and the same group of pills as at breakfast. At 3 p.m. and 4 p.m., liver pills again (with carrot juice). At 5 p.m., pancreatic, thyroid, niacin. At 6 p.m., niacin and at 7 p.m., dinner and the same pills as at breakfast and lunch. The niacin is dissolved under the tongue each time to reduce or prevent flush. There are 13 fresh-squeezed juices to drink every day." (and four-five coffee enemas).
That kind of information can be very useful to someone thinking, "Should I try this?" But keep in mind that most alternative clinics don't do research on their methods and don't do follow-up on the patients they treat, so they have virtually no idea whether their approach is actually helping anyone.
And if you don't respond to their particular regimen, they have nothing else to offer--unlike major university-based cancer centers, which now provide a range of treatments, albeit all mainstream. I still see an expert in Chinese herbs who is on staff at a major cancer center in New York City.
Q: Why don't we have better information?
A: I blame people on both sides. Many mainstream doctors are still completely unsympathetic and even hostile to alternative approaches--but alternative practitioners are also at fault. A lot of them haven't been interested in testing their approaches at all.
Of course, testing cancer treatments isn't easy. It takes time and lots of money, and some approaches, like Chinese medicine, are difficult to test because they're so individualized. Fortunately, more and more alternative approaches are beginning to be tested, but it's slow. The only way to speed up the process is for cancer patients to demand more studies.
Q: In the end, what alternative treatments do you think worked for you?
A: That's the $64,000 question, isn't it? I remember my mother used to say to me, "Ann, why don't you do what works?" If only it were that easy!
First, let me say that I don't use the words "therapy" or "treatment" to describe alternative approaches. I prefer to call them "possibilities." Because that's really all we know about many of them. It's possible they might help.
In my own experience I've come to believe that there are many possibilities out there that help some people some of the time. But the truth is, I have no way of knowing (exactly) what worked for me. I think vitamin A was helpful. I like Chinese herbs and I still take them (new tumors stopped developing and old ones regressed with the herbs!). I think detoxification, things like coffee enemas, are useful. I think diet and exercise are important. (A combination approach is probably best - mind-body, exercise, detoxification, dietary supplements and good nutrition).
Who knows? All of these things may have worked together for me, but it really is impossible to know. And what worked for me won't necessarily work for other people. I'm a research study of one, and any scientist will tell you that's not statistically significant.
Still, I'm convinced that some of the alternative approaches I tried helped save my life. The real point about alternative treatments is that they provide options for people with cancer. They offer hope. And that in itself can be pretty powerful medicine.
Peter Jaret is a contributing writer who lives in Petaluma, Calif.
Searching for Answers
The Internet has made more up-to-date information about cancer available than ever before. Unfortunately, not everything you find online is true or reliable. Where to go to get the straight story? We've prowled the web to come up with a dozen sites that provide good places to begin your search.
Annie Appleseed Project
annieappleseedproject.org A clearinghouse for information and useful links--includes smart and lively summaries of scientific conferences on alternative and complementary approaches to treating cancer.
Association of Cancer Online Resources
acor.org Offers information about treatment options, links for online support groups, and lists of clinical trials.
Breast Cancer Action
bcaction.org Provides free access to the group's newsletter, as well as a comprehensive series of frequently asked questions about breast cancer. Annual membership fee of $50 for full access to the site. (much on environmental issues)
cancerlinks.com A comprehensive list of online resources with easy-to-use links. Includes a section devoted to alternative, complementary, and integrative medicine.
Cancer Research Portfolio
researchportfolio.cancer.gov Maintained by the National Cancer Institute, this site includes lists of research projects divided by type of cancer and type of cancer research (treatment, prevention, early diagnosis).
European Cancer Patient Coalition
epc.online.org A good introduction to treatments and therapies available in western Europe. Click on "helpful information" for a comprehensive list of European-based clinics, Internet sites, and patient support groups.
pubmed.gov A database that includes more than 15 million citations for biomedical articles, including results of published clinical trials, dating back to the 1950s.
M.D. Anderson Complementary & Alternative Medicine
mdanderson.org/departments/cimer One of the country's largest treatment centers, M.D. Anderson has been a pioneer among integrative cancer programs. The site includes a wide range of useful and frequently updated information.
National Cancer Institute
nci.nih.gov The flagship of federally funded cancer research, this site offers authoritative information about conventional cancer diagnosis and treatment.
National Center for Complementary and Alternative Medicine
nccam.nih.gov Part of the National Institutes of Health, the NCCAM site includes a useful alphabetical listing of information about treatments and therapies.
Office of Cancer Complementary & Alternative Medicine
cancer.gov/occam Established in 1998, OCCAM coordinates complementary and alternative medicine research at the National Cancer Institute. Site includes best case studies of unconventional treatments.
savvypatients.com Useful information about conventional and alternative options, with a focus on patient activism.
Promising Cancer TreatmentsA growing number of alternative approaches to cancer are being put to the test at research centers around the country. Although such studies don't mean that the treatments work, they do suggest there's enough promise in preliminary evidence to justify further investigation. For a list of proposed and ongoing clinical trials, check out the National Center for Complementary and Alternative Medicine (nccam.nih.gov) and the Office of Cancer Complementary & Alternative Medicine (cancer.gov/occam).
Here's a sampling of trials that are currently recruiting patients or already under way.
Ginseng and Ginkgo
Experts at the National Center for Complementary and Alternative Medicine (NCCAM) are investigating how these two popular herbal substances affect cancer drugs and whether they can boost natural enzymes in the body that help fight cancer.
Researchers at the University of Iowa in Iowa City plan to study whether biofields created by healing touch can enhance the immune system's ability to destroy tumor cells.
Columbia University researchers are currently enrolling patients in a study to test whether diets rich in phytoestrogens change biochemistry in ways that might favor cancer-fighting hormones and enzymes.
Widely used in Europe for more than 80 years, mistletoe extract is being tested as a potential cancer-fighting agent by researchers at NCCAM.
A consortium of cancer centers in ten states is testing whether shark cartilage could help slow the growth of breast and colorectal cancer.
Can prayer make people well? To test the possibility, researchers at NCCAM are using experienced healers to transmit "mental intention for health and well-being" to patients around the country with glioblastomas (brain tumors).
The National Cancer Institute, along with several other leading cancer research centers, is currently recruiting subjects for a study to test whether the mineral selenium can help prevent prostate cancer.
Researchers at the University of California, San Francisco plan to test whether Swedish massage therapy can reduce fatigue in patients undergoing conventional cancer treatments.
Diet and Pancreatic Cancer
Patients are being recruited for a Columbia University study that will test whether a complex dietary regimen including pancreatic enzymes and coffee enemas can help slow the growth of cancer. (Kelley/Gonzalez Method)
Diet and Prostate Cancer
Can a diet rich in fruits and vegetables, green tea, and vitamin E lower prostate specific antigen (PSA) levels and help prostate cancer patients survive longer? A study at Memorial Sloan-Kettering Cancer Center is under way to find answers.
Written by Peter Jaret after telephone, email and in person discussions with Ann Fonfa
Published in Alternative Medicine magazine, Nov/Dec 2004 issue