Inflammatory Breast Cancer and Alternative Cancer Treatments

In October 2008, I had an opportunity to add a cancer rider to my health insurance policy. After all, as my neighbor said: “Everyone gets cancer, nowadays, so you may as well prepare for it.” I thought a lot about that, but I had always said that if I ever got cancer I would use holistic (i.e., “alternative”) methods to treat it. So why get a policy that would only pay for the conventional cut, burn and poison approach, I wondered. I decided to keep my money in my pocket.

Eight months later, on June 30, 2009, I was diagnosed with inflammatory breast cancer. What I read about it terrified me: it is a rare and very aggressive form of breast cancer; only a 40-50 percent five-year survival rate; never discovered before it was at least regionally if not completely metastatic (i.e., at least stage 3).

Cancer insurance or no, I knew from day 1 that I was going to have to submit to conventional treatment if I wanted a realistic chance of living. That doesn’t mean I accepted this with grace and a peaceable spirit. Indeed, I wailed and railed against the evils of what I was about to have to endure. At the same time, I searched high and low to find someone who could assure me that going all-natural, instead, would work just as well—if not better.

I decided to ask three random people for advice. They had to be health care professionals, I concluded, but not doctors, since I believed M.D.s might be biased due to their training and their need to adhere strictly to AMA standards. In addition, my three advisors had to be very experienced working with cancer patients within their fields of expertise, and they had to have a track record suggesting that they were at least very sympathetic to an alt-med (alternative) treatment approach.

Because of the legal liability issues involved, I knew I couldn’t straight-out ask them what they thought I should do. So instead, I asked them about their experience: “In all the years you have worked with cancer patients, how many people have you known who did not do any conventional treatment, but relied on alternative forms of treatment—AND who lived, cancer-free, for many years after that?”

My first professional was a chiropractor who did an alternative form of breast imaging known as thermography. Her partner in the clinic was an M.D. who practiced integrative medicine.

“You need to listen to your oncologist,” she said, jumping right to my unasked question. “With a diagnosis like yours, you can’t afford to mess around.”

“You haven’t known anyone who ever successfully used alternative methods to treat their cancer?” I asked, a little sad not to have been given even a glimmer of hope.

“I knew one woman,” she replied. “She had an early-stage breast cancer—not one like yours. She decided she was going to ignore what her oncologist said and rely on holistic methods to cure herself. She got on the Internet, did some research, and began following a regimen that she thought sounded like a winner.

“After a year, she came to our clinic wanting advice about what else she could try. By this time the cancer had progressed, and her breast was ulcerated. It was clear that what she’d been doing hadn’t worked. We told her to go back to her oncologist immediately and this time do what he said! I don’t know what happened to her. We never saw her again.”

One down.

My second professional was a psychologist who did a lot of work with the local cancer patient support organization (which was open to the idea of alternative medicine) and had focused most of her professional life on providing therapy to people with cancer.

“Well, I’ve known three people who went the all-natural route,” she said, “although one did have surgery first, but then rejected chemo and radiation.”

“Did they all succeed? Did they live cancer-free after that?” I asked hopefully.

“No. Two of them died fairly quickly,” she said. “The one who had surgery is still alive. She’s my sister. She’s having some difficulties, but she is still alive and seems to be cancer free, as far as I know.”

This was not exactly a ringing endorsement of alternative approaches. Two down.

My third professional was a licensed nutritionist. He was no, “just get your RDA of vitamins and drink Boost if you have problems eating during treatment” kind of guy. He was completely tuned into the role that the right kind of diet and supplemental nutrition could play in fighting cancer.

“Not really,” he said, when I asked him my question. “I’ve worked with a lot of people, like I am with you here today, who have used an improved diet and carefully chosen supplements to enhance their response to conventional treatments and help their bodies recover and stay healthy afterward. And I’ve worked quite a bit with [a well-known integrative oncology center]. But I haven’t seen this kind of approach work very well as a stand-alone treatment method.”

Strike three.

During all this time, I was also devouring info from reputable sources — and even a few questionable ones – looking desperately for a logical, promising reason to skip my upcoming first chemo and turn exclusively to something less toxic. I read the (then) newly released book by Keith Block, M.D., Life Over Cancer, in which he details an anti-cancer diet and gives guidelines on how to select useful supplements. I ordered a copy of David Servan-Schreiber, Ph.D.’s, equally new The Anti-Cancer Diet, which, confusingly enough, endorsed a similar yet somewhat different form of diet than what Block encouraged. I used the American Cancer Society’s Complementary and Alternative Cancer Therapies (2^nd ed.) to check out every supplement my nutritionist suggested, soon realizing that they were, at heart, terrified of what a well-considered nutritional approach might do—or not do. After literally every entry, they inserted boilerplate language to hedge and equivocate about taking any of it too seriously as part of a treatment plan. On the other end of the “terrified” spectrum, I read as much as I could stomach of an alt-med book on using hydrogen peroxide to cure cancer that a friend sent to me. One of the chief rhetorical strategies of the author to build up the reader’s faith in his proposed treatment was frequent and scathing denigration of conventional treatment, those who develop it, and those who administer it.

And of course, I was hearing stories. Most were sad, cautionary ones: The mother of my son’s childhood friend, a Reiki practitioner who relied on it to heal her cancer. She soon died. The father of another son’s childhood friend, with a small, easily treated cancer on his tongue. He refused curative surgery, opting instead to treat the cancer holistically, since it was so small and minor. It spread, making a large ulcer of his mouth…and he died a miserable and painful death. A casual friend who developed advanced breast cancer. She had one literally gut-wrenching dose of chemo and decided to rely, instead, on methods used at a Caribbean cancer clinic plus the exotic energy healing technique she and her husband had been teaching for years. She died a year later.

Every once in a while I’d hear a promising “alt-med cure” story. Like the son of my friend’s friend. When he got cancer, his mother, a registered nurse, urged him to use holistic methods. My friend assured me that he had done so and beat the cancer. So I called the nurse/mother to get more details. It turns out that this adult son relied largely on conventional medicine but did eventually include some alt-med elements. This was not exactly the rejection of mainstream medicine and rousing success story for alternative medicine that I’d been hoping to find.

I fought against it. I agonized over it. I hated it with every fiber of my being. But I did conventional treatment for my IBC. I’m not sorry I did.

Since those crushing days of fear and indecision, Kelly A. Turner, Ph.D., published Radical Remission, recounting three dozen cases out of more than 200 she has collected in which cancer patients achieved a complete remission (“cure”) or long-term stable disease in situations where this was not expected to happen—or even deemed medically possible. Most of these people had used conventional treatments, but achieved their cures/stability by using alternative methods when conventional treatments failed. Despite the fact that the book doesn’t present its info in a rigorous, scientific fashion, it’s the largest single collection I’ve yet found of the kind of stories that are more often the subject of whispered gossip. Given Turner’s education and professional status, I see no reason to doubt the authenticity of the cases she presents.

How to square that, then, with a recent article published in the Journal of the National Cancer Institute, “Use of Alternative Medicine for Cancer and Its Impact on Survival”? This study looked at 281 cancer patients without metastatic disease who chose to forego conventional therapy and rely exclusively on alt-med treatments. They found that in general, patients who used alternative rather than conventional treatment had a 2.5 times greater risk of death; for breast cancer patients, specifically, it was a 5.7 times greater risk.

If Turner’s Radical Remission folks used alternative methods to get their results after conventional medicine had failed them, why weren’t the survival stats better for the people in the JNCI study who had relied exclusively on alternative methods? I suspect the answer has to do with the nature of cancer and the nature of clinical trials.

Clinical trials tell us what works, or doesn’t work, for groups of people whose disease shares certain characteristics. It’s population-based, bell-curve medicine, and it works — most of the time. For most people. Its approach to health is at the macro level, where “n” (the number of patients being considered) is hundreds and thousands of people.

But cancer is really a very heterogeneous disease. Granted, it’s one “thing” in the sense that what we call “cancer” is a large group of cellular abnormalities sharing a few general characteristics that together cause runaway cellular replication. However, new discoveries at the molecular and genetic levels are showing us daily that these cellular abnormalities exist in a dizzying number and variety of forms, both from one type of cancer to another and from one person with a given type of cancer to another person with the exact same type of cancer. This approach to health happens at the micro level, where “n” may well equal one—or close to it.

What we have, then, are two truths: Considered at the level of large groups of people, as the JNCI article shows, alternative cancer treatments alone obviously don’t reliably target the major features shared by nearly all cancerous cells that need to be targeted for a successful treatment outcome. However, considered at the level of at least some individuals, as Turner’s work shows, alternative cancer treatments may be targeting something beyond these major features—something unique to certain instances of cancer that conventional treatments don’t target.

My current theory is that the therapeutic agent(s) at work in at least some of the alternative treatment methods out there target rare, but real, anomalies at the molecular or genetic level of the cancer that aren’t present frequently enough in the larger population of cancer patients (those at the center of the bell curve) to make their existence known and important. The anomalies’ “signal,” if you will, gets lost in the “noise” of the more numerous and dominant features of cancerous cells.

So, I believe that in a large group of cancer patients, by definition only a very, very few will be likely to have a cancer-causing anomaly at the micro level that will respond especially well to the therapeutic agent(s) that seem to work sometimes in alternative medicine. Ergo, if that entire group of patients relies exclusively on an alternative treatment modality, it’s not likely to turn out well for them, just as the JNCI study showed.

On the other hand, for those few people in the group who do have one of those rare anomalies, conventional treatments, while vitally necessary, may not be enough to do the job, and they may find themselves on the short tail of the survival curve. However, I think that if those people find their way to the “right” (for them) alternative treatment that targets their particular cancer micro-anomaly, they may well become candidates for inclusion in Turner’s next book.

If I’m right, what does this mean for a person newly diagnosed with cancer? It means you’d be crazy to ignore what population-level studies have shown us are treatments that work—that may even cure. Despite what some folks in the alt-med community want to tell you, conventional treatments can and do cure cancer, brutal and nasty though they may be.

But you’d be just about as crazy to cry “fie” about alternative approaches to cancer, as too many in the mainstream medical world are wont to do. Despite the nay-sayers’ deep and sometimes aggressive disdain for treatment methods that do not have the FDA’s imprimatur, some so-called alternative methods have legitimate experiential and experimental evidence for their efficacy. There may thus be a need to take their contributions to cancer treatment seriously.

For instance, the prestigious journal Cell published an article on May 31 about research done at one of the Ludwig Centers for Cancer Research showing that baking soda—an (in)famous alt-med “cure” for cancer—may actually have a role in treating the disease…not quite in the way the alt-med world has so often preached, but not in a way that is totally divorced from alt-med ideas, either.

This isn’t the first time I’ve watched this happen. “Birthing centers” at hospitals became a thing only after the home birth movement began to get some real traction in the general population. In the 1970s, eating broccoli and whole grains to help avoid colon cancer was a silly idea promoted only by health food faddists, studies came out later showing that increased consumption of roughage could help decrease the incidence of diseases like colon cancer. Now the idea is thoroughly mainstream. No wonder, then, that all alt-med approaches to the treatment of cancer can’t be totally and convincingly debunked. Some really are just stupid. Caveat emptor! But sometimes, although they are not totally right, some of these ideas and approaches are not totally wrong.

While I wouldn’t—indeed, didn’t—bet my life on it as a stand-alone approach, there is good reason to try to integrate some of the wisdom of the alt-med world (the world where n = 1) into the hard-won clinical trial knowledge of the conventional medical world (where n = thousands). According to a December 2017 article in the journal Integrative Cancer Therapies, around 40-50 percent of cancer patients do this—a fact that has probably played no small role in the efforts of cancer centers all around the country to start “integrative cancer clinics” as a part of their conventional treatment programs. So far, these clinics seem to lean toward offering conceptually safe alt-med approaches that don’t directly impact physiology in the way drugs and radiation do. Instead, they focus on “mind-body” things like exercise programs, yoga, meditation, massage and sometimes even healing touch/energy healing practices. I look forward to the day when they aren’t afraid to offer more.

The uneasy truce I adopted between my original holistic intentions and the need for aggressive conventional cancer treatments focused on using the best that hard science had to offer from both worlds. Not only did I do chemo, surgery and radiation, I also changed my eating habits, and the nutritionist guided me in taking supplements with experimentally proven benefits for cancer patients. When I told my oncologist about the supplements, he expressed some alarm.

“Please let me know what you’re taking,” he said, his voice pitched just a little higher than usual, some stress showing through.

“I will,” I reassured him. “As soon as the list is finalized.”

“You know,” he went on, “those things aren’t just inert. They actually do stuff!”

“I know!” I laughed my response, nodding my head. “I’m counting on it! Why do you think I want to take them?!?”