Laura’s Story:  Recovery from Aggressive Breast Cancer

My name is Laura.  I was diagnosed with stage IIIC breast cancer in early December 2008.  I had found a lump in August of 2008 and went immediately to the hospital for a mammogram and ultrasound.  The radiologist said he thought it was nothing to be concerned about—probably just fibrocystic changes, normal at my age.  I went for a second opinion with a surgeon, who agreed with the radiologist.  After three months, I returned to the hospital for a second check-up with a new radiologist.  I could see he was alarmed.  I was sent off for a core biopsy and diagnosed with malignant breast cancer.

A few days later, I noticed some reddening and puckering of the skin on my breast. When I returned to the surgeon, he seemed in a state of sheer panic.  His pronouncement was Inflammatory Breast Cancer, one of the rarest forms, afflicting only about 2% of women.  I was subjected to a barrage of tests.  The cancer was very aggressive: the tumor was 7.5 cm, had four satellite tumors, spread to the axillary lymph node, and I had the complication of Inflammatory Breast Cancer.  I am 47 and had routine mammograms every year, but one, since the age of 40.  How could things have gotten so out of control?  The doctors were not very hopeful and my outlook was not good.

The first week after diagnosis was horrible. I thought I was going to die.  I was told my case would be “managed care” for what was left of my life.  My treatment was to include six months of chemotherapy, a radical modified mastectomy and radiotherapy.  Then I would just have to wait and see.  I started chemotherapy on December 22, 2008.

Luckily, I live in an area where alternative health care practitioners abound.  I also had spent my adult years traveling the globe, so was very open to alternative ways of doing things.  These two components, along with a steely will, carved a path that brought me not only to wellness, but to renewed sense of wholeness.

Frantic about the potential impact chemotherapy would have on my body, I knew I had to take action of my own.  This would be the challenge of my life.  I picked myself up and the phone too.  The first person I called was Nina Anderson.  Recommended to me by a friend, Nina told me to immediately stop eating sugar—no fruit, no packaged foods, no potato, pasta, honey, juice, nothing that converts to sugar.  And to stop wearing a bra. I did.  Nina’s company, Safe Goods Catalogue, represents a fermented soy product called Haelan 951,which was purported to help patients through chemotherapy. (There are also many stories of complete responses being achieved with just Haelan).

Scared and wary, I needed more convincing. Nina led me to Dr. Vijaya Nair.  Dr. Nair had supervised the Haelan research team for 6 years, and I spoke with her at length about my concerns.  (Dr. Nair subsequently founded a company called Essence of Life and created a product called JIVA Fermented Soy Beverage, which is very similar to Haelan but much less expensive.)  Dr. Nair added fermented soy/curcumin pills to my daily routine.  Curcumin reduces inflammation in your body, and that is the main pathway cancer travels along.  She convinced me I needed to take the Haelan 951, although it is a competitor product.  The good doctor told me I needed to journal every day, find a marital counselor, an energy healer, meditate daily and perform community service.  I did everything as she instructed.

During this period, I met with a surgeon at Massachusetts General who explicitly told me that changing my diet was not a good idea.  I was alarmed.  Surely giving up sugar is not a problem?  On the long ride home in the car, we discussed how the surgeon had dismissed diet so readily without asking what I actually do eat.  My oncologist, too, did not want to discuss it, but did not try to deter me. What was going on?  Why can’t they talk about nutrition?  I was baffled until it was explained to me (by a doctor) that doctors are trained not to discuss anything that is not clinically proven to work.  I would watch in disbelief all the patients plugged into their chemotherapy drips as the nurses brought them coca-cola and fruit juice laden with high fructose corn syrup.

Dr. Nair also referred me to Mark N. Mead, MSc, whom she described as a “nutritional oncology specialist” and who was working at the time as a nutrition educator and research consultant for the Raleigh-based Carolina Center for Integrative Medicine.  As part of a comprehensive session, he identified an array of nutritional and herbal supplements and provided research support to back up the list.  He also suggested that I follow a macrobiotic diet (although he did not call it that at the time) and reinforced Dr. Nair’s coaching about meditation and told me to walk every day, too.

For several years, I had been aware of The Kushi Institute as it is located in Becket, Massachusetts, very close to my home in Lenox.  The Institute appears periodically in magazines and area newspapers.  When I told Mark that I had been thinking of attending he replied that he had served as an assistant to Michio Kushi for a year back in the 1980s.  This sealed the deal; I knew I must go.  I was beginning to trust my inner compass, following the leads that felt right to me, finding the place deep inside that would help me heal myself.

During these months, the economic downturn was at an all-time low and my husband was laid off from work. I knew I had to let it slide and forge ahead, money or no.  The Kushi Institute was kind enough to allow me access on a scholarship.  On March 1, 2009, after my first round of chemotherapy was over and unsuccessful, I packed up and went to the Kushi Institute for a week. I was one of about 20 in my group, which included a myriad of diagnoses.  As we told our stories the first night, I became acutely aware that most students were there as a kind of second or last chance after conventional medicine had failed them.  I was one of two individuals that came to the Institute first.  We had daily lectures on subjects ranging from food as medicine to unhealthy beauty products.  We learned about yin and yang, qigong exercises, lymph scrubs and attended cooking classes daily.  My counselor told me that, because I was already on a macrobiotic-style diet, making further changes would be easier for me than the others in the group.

When I returned home, I religiously implemented the “healing diet” and all the things I learned at the Kushi Institute. I was cooking 3 meals a day from scratch as taught, doing lymph scrubs twice a day, making sure I got outside, practicing qigong meditation, preparing home remedies prescribed by my macro counselor and applying plaster packs to my breast every night.  It was a full-time job.  I was now on a new chemotherapy treatment of Taxotere and Herceptin which lasted twelve weeks.  During the treatment, my oncologist was amazed at the transformation.  Since little progress had been made on a more aggressive chemotherapy protocol, he hadn’t hoped for much.

My last treatment was on June 5th, 2009.  I knew in my heart that the cancer was gone, but could not get the tests to prove it.  The surgeon didn’t see the need for any more testing as I was scheduled to have surgery.  I circumvented the system and got myself the tests.  At the end of June, my breast MRI and PET scan were completely clean.  The doctors were flabbergasted and said they had rarely, if ever, seen this response.  In the end, I declined a mastectomy as I feel breast cancer is a systemic disease and a mastectomy is no guarantee.  What is important is making the changes necessary to live a complete, happy, and healthy life.

Since July 2009, I have been sharing my story with others.  This has led me to appearances on local TV and radio shows and I helped to organize a womens health fair called “Girls Night Out”.  The event brought practitioners from all modalities together in one place.  I do believe that this journey happened for a reason and the events that led to my healing are related. In the throws of darkness, I pledged to the universal power to use my life as a model of success to fight for integrative care as a standard, not a last ditch effort.  It is paramount we start healing the individual, not just fixating on an individual body part or isolated manifestations of disease.

I feel an enormous debt of gratitude to all those healers who offered me the support and love I needed to help me through this difficult time.  There were more than I could count here.  As Mark Mead would often say to me, “I’m so proud to be part of your team”.  A team is what it takes.

During treatment, I would tell my doctor that I knew, intuitively, what was behind my disease, but it fell on deaf ears. I thank god that I possessed the drive and determination to get the help I needed.  Now, as those traits push me forward, I have started W.I.N. —Womens Integrative Network—‘to bring integrative care to women struggling with a cancer diagnosis.

W.I.N. Mission Statement

Our mission is to provide integrative care to women diagnosed with cancer through a network of practitioners and health specialists, and to meet patients needs by offering financial resources, educational programs and emotional support. By promoting awareness in the public, patient and medical fields about integrative care, we strive to improve patient outcomes and improve the overall wellness of the Berkshire population, while serving as a model for other communities.

W.I.N.

Laura Fetherolf

413-637-4663

Brenda’s Story:  “I Think I Can Do This”

When I walked into Mark’s cool, serene country office that hot day in July, 2009, I wanted just two things: to make sure that the treatment path I was facing was the only rational choice I had, and to get a list of nutritional supplements I could take to try to stack the deck, outcome-wise, in my favor. The truth is, I was as scared as I have ever been in my life.

Eleven days earlier, I had been diagnosed with inflammatory breast cancer, a rare and very aggressive sub-type of breast cancer that remains undetectable (especially by mammograms) until it is at least Stage IIIB—locally advanced and very dangerous.  IBC, I had learned, has a high propensity to metastasize to other organs and become Stage IV disease—ultimately fatal.  Because of this, the five-year survival rate for women with IBC is about half as good as it is for other forms of breast cancer.

Ironically enough, eight months before my IBC diagnosis I had briefly contemplated buying a cancer rider policy for my health insurance.  But no, I had decided.  All of the on-line risk assessment guides indicated that I was at low risk for cancer.  And besides, I thought, if I ever got cancer, I would not treat it by cutting, poisoning and burning myself (surgery, chemo and radiation therapy).  I’d use more holistic methods.  I’d work with my body, so that it could heal itself.  And the rider policy wouldn’t pay for those things.  So why waste my money?

That, of course, was what I thought before I understood much about the different stages of cancer or about tumor grading systems…and most importantly, before I was actually diagnosed with it.  I recently told Mark that when faced with the reality of an aggressive, late-stage cancer, I think I folded like a cheap tent.  Mark told me that he thinks I was making rational, intelligent choices and not stubbornly relying on pre-conceived notions or letting my fears about conventional treatment (and they were huge!) affect my judgment.

Of course, I want to believe Mark is right.  I’m not sure he is; I suspect he’s being compassionate toward me.  But one thing I know for sure.  After I left Mark’s office that day, I felt more hopeful and stronger than I’d felt for several weeks.  When I got home, I emailed my oncology treatment team and said, “OK.  I think I can do this, now.  Let’s go ahead with the chemo.”

I had one important question when I met Mark that first time.  It was the same question I had posed to a chiropractor in Virginia who shared her office with an integrative MD.  The same question I had posed to a psychotherapist who worked for the local cancer support program, where Mark had given talks on nutrition and integrative approaches to cancer. (That’s how I found him!)

“How many people have you known who have relied completely and exclusively on alternative methods to treat their cancers, gone into remission, and lived cancer free for many years after that?”

I knew I couldn’t ask these people if they thought I could beat IBC if I refused conventional treatments and relied on alternatives alone.  That would be asking them to make medical recommendations for me that they were not “qualified” to make, and it could get them into big, big trouble.  But I could ask them to report on their experiences.

Mark, like the other two professionals I had consulted, told me he knew of none.  He said he knew many people who had combined conventional and alternative treatments in one way or another and done well—some for many years.  But he knew of none who had refused conventional treatments, relied on alternatives alone, and lived for any length of time.

That clinched it.  I knew for sure then that I couldn’t reject conventional treatment.  An oncologist friend had told me that if I refused treatment, I would live a year or maybe two before the IBC would kill me.  “But that last year,” he warned, “will not be a good one.”  My three professionals had all told me that they had yet to see someone rely exclusively on alternative methods to treat cancer and have long-term good results.  So that put me squarely in the middle: needing a plan that would be a mixture of conventional and alternative treatments custom designed for me, to try to save my life.

To my chagrin, Mark was not ready to move from my first question to my second: What supplements, then, should I take?  Oh, no.  He wanted to talk about what I ate.

Big sigh.  Rolling of eyes.  OK.  So I was going to have to humor him with this diet talk before I could (hopefully) get him to tell me what vitamins to take so I could get well.  I told him all my favorite foods and what a typical day’s diet might be for me.

In return, he told me all about internal terrain—how some foods create conditions inside the body that are pro-inflammatory and pro-insulin, both of which are hothouse conditions for cancer cells.  He explained that a basically vegan diet, with generous amounts of fish, would calm inflammatory and glycemic (pro-insulin) processes and make it harder for the cancer cells to live.  He gave me a diet to follow.  Not to lose weight (though I had a very high body mass index).  He never mentioned my weight.  He was only focused on the cancer.  The objective was to change my internal terrain—to try to save my life.

Only then did he begin talking about what kinds of supplements I should take.  It was really quite impressive.  He’d look at his notes about the cancer I had and its hormone attributes, then suggest a certain supplement at a certain level, citing a research study published in this journal or that journal.  Then another.  Then another.

My head began to swim.  It was too much information, and I couldn’t write it all down fast enough.  I wasn’t sure I was getting it all right.  He told me not to worry, because he would write a report for me and lay it all out again in there, complete with references to the studies.

As I said, I left that meeting with Mark feeling hopeful for the first time in weeks.  “I can do this,” I thought.  “I am not totally at the mercy of forces beyond my control.  My doctors can do what they think they have to do, and I will do what I have to do.  I have some say in what happens to me.  I have at least some control.  I think I can do this.”

And I did.  I had the conventional standard of care treatment for IBC, which is pretty intense.  I also changed the way I ate, and I began taking the supplements that Mark suggested, both to support my body in its fight against the cancer and to support it in the face of the beating it was taking from my conventional treatments.

My oncologists were not really happy about all of the supplements I was taking.  As my medical oncologist said, these supplements are not nothing.  They do real things.  (I was glad he admitted this and didn’t just brush it all off as a waste of time and effort!)  The trouble is, he said, we don’t know entirely what they do.  Our knowledge about them is too sketchy.  He much preferred that I focus my “integrative” efforts on things like yoga or meditation.

Yeah, right, I thought.  He’d prefer I do yoga and meditate because they don’t really “do things” in the same way that nutritional supplements do. They don’t have the same direct impact on bodily functioning that nutrition has.  Let’s face it…if they did have the same kinds of effects, we’d all be able to give up eating nutritious food and just do yoga and meditate instead!

I agreed with him.  They do really do things, I said.  That’s my point exactly.  And although we do not have as much research on nutritional factors as we do on patentable, profit-earning drugs, we do have some research that gives us important information.  It is because of that that I was determined to take them.  I was adamant.

In the end, we negotiated the removal of one or two of them while I was on chemo, to prevent possible drug interactions, and we negotiated small periodic hiatuses when it seemed especially important to clear my body of substances that might confound a particular aspect of my treatment.

My oncologists all say that I weathered treatment remarkably well.  They also say that I had an enviable response to my treatments.  Though it is rare for IBC and the hormone traits of the cancer I had, I almost achieved a pathological complete response.  That bodes well for my future.  It’s not a guarantee.  But it bodes well.

I’ve been finished with treatment for a year and three months, at the time of this writing.  We had a recurrence scare three months ago, but it turned out to be nothing.  Just allergies acting up worse than they used to.  Life is good.

What makes it even better is that there isn’t as much of me around as there used to be.  I lost 70 lbs. by changing the way I eat (though my cancer maintenance drugs have caused me to gain back about 10 lbs.).  This weight loss, it turns out, is also beneficial in terms of fighting the cancer, since the kind I had is fed by hormones derived from body fat.  Less fat means fewer cancer-feeding hormones.

I accomplished this weight loss feat not by “going on a diet,” which implies it is something I could “go off of” and quit doing.  No, I have changed the way I eat, just as Mark suggested.  If framed in terms of losing weight for its own sake, I would not have been motivated to change the way I ate at all.  But because it was framed entirely in terms of making my body inhospitable to cancer cells—that was a real motivator!

Because I know myself and my proclivity for “slippery slope” behavior, I’ve developed a food journal where I record all that I eat, every day, in two columns: good stuff and bad stuff.  The bad stuff column is sub-divided into land animals, dairy, and sugar—the foods that are most pro-inflammatory and pro-insulin.

The food journal should tell you something else about me: I’m not a fanatic about it.  I like to think that I have frustrated both my oncologists and my alternative caregivers, like Mark, equally throughout this whole experience.  I have not followed Mark’s advice 100%, but he puts up with me and continues to consult with me, anyway.  I suspect he and my oncologists visit the same brick wall, after talking to me, so that they can bang their heads against it in frustration!

I don’t follow my modified vegan diet 100% of the time.  If I did, I’d begin to feel deprived because I can’t ever have foods I love, like cheese or sweets.  So I made a deal with myself: If I follow the diet at least 80% of the time, I can cheat up to 20% of the time and still feel good about myself.  I will “save up” for big cheats by engaging in extra good behavior before and after.  For instance, my birthday is coming up, and I plan to cheat big-time to celebrate it!  Truth is, though, by writing down what I eat, I can see that I follow the diet more than 80% of the time.

I also don’t take all of the nutritional supplements in the doses Mark recommends.  This is not because I don’t think I should take them.  It’s because I can’t afford to take them at that level.  The great thing is, Mark is OK with that.  He would of course prefer that I take them in the doses that research has shown are most effective.  But he also understands the financial realities I face.

I can’t imagine what it would have been like to face cancer without Mark in my corner. He gave me strength and hope at a time when I was desperate to find them.  Rational strategies to give me strength.  Rational reasons to have hope.  Not grandiose promises about questionable “cures.” Not maddening pep talks about how a patient always has to “think positive” and have a good attitude or they can’t cure their cancer.  No, he gave me science-based, concrete advice.  I remember the exact place on the road, driving home from my meeting with him, where I first thought, “I think I can do this.”  I can face having cancer.  I can deal with needing cancer treatment.  I can do this.

I hope the cancer never comes back.  But if it does, I know that Mark will still be right here, in my corner, fighting alongside me, helping me do the best I can to put it back into full remission again.

Brenda Denzler, Ph.D.