Friday, December 28, 2007

My Personal Survival Tools

A colleague recently told me that if she got cancer, she would rail at God: “Why me, Lord, why me?” She said my attitude toward breast cancer was an inspiration. While being considered inspirational was flattering, it was also off-base. Blaming God gets you nowhere and it makes you miserable on the way.

I love solving problems, so I saw my cancer as the biggest challenge I have ever faced and I was determined it wasn’t going to beat me. Plus, I think trying to change the course of divine decisions is a bit arrogant, not to mention self-defeating. I don’t think God would listen to my whining and say, “Oh, you have a good point there, Pat. Never mind. Cancel that cancer. My mistake.”

I told my husband that, of all the illnesses I thought I might get, I had never thought I would get breast cancer. “What did you think you would get?” he asked. I had to think a while. “Nothing,” I finally answered.

I suspect that I am normal in that respect, that most of us expect the other guy to get the nasty illness. But once cancer decided to take up residence in my breast, I decided to make it clear that it was unwelcome, that I planned to replace it with healthy tissue and, in the process, get on with a meaningful life.

Before my diagnosis, I thought I knew how to pray. This whole experience changed that and made my prayers more thoughtful and introspective and less demanding. Oddly enough, by moving outside of myself, my chats with God now suit my earthly needs better than before. And I have to believe they also reach heaven’s ears more effectively.

Instead of praying for God to cure me, I began to pray for the tools to help cure myself. I figured if I were God I would get tired of people complaining and asking me to solve things. I would appreciate somebody who was willing to do the work herself, but who just wanted to make sure she had the proper equipment.

Plus, I thought that if I gave into the negatives, I would be acknowledging that the cancer was stronger than me. I was not about to give it that advantage. So I prayed for the strength to make the right decisions on my treatment, the knowledge to take care of my health beyond medical intervention, the courage to trust others, the wisdom to live with whatever my illness brought.

On the morning before my third chemo treatment, I awoke with a palpable sense of wellbeing, as though I had just been kissed by an angel or touched by the hand of God. Or my mother, who had died in 1993. I felt surrounded by love and warmth. I smiled. I was softened and strengthened at the same time, ready to fight, but calmly, meditatively, wisely, thoughtfully. I knew my toolbox had been delivered. I had the tools I needed to heal. Whenever I get the least bit discouraged, I remember that moment and am once again revived.

After that, I began to inexplicably awake with a smile. My response: “Thank you, God, for another beautiful day.” This continued throughout treatment and sometimes it was a conscious act, but most often it just happened without thought.

Prayer was the box that held my healing gear and provided the texture and structure of my life through treatment. The most essential tool was the support of those around me whose love became even that much more obvious and strong. I have been blessed with a devoted husband and family who reminded me in words and acts that they loved me. My sister Phyllis mailed us her juicing machine and my husband began making me fresh vegetable juice daily, high in antioxidants, vitamins and minerals—something he still does every day. My kids bought me books: Ellen got me the breast book that became my bible and Josh bought me a wonderful book of cartoons that made me laugh. Both took a week off to fly home to Iowa from the East Coast to help care for me. My brother John remembered how, during Lent, he and I used to sneak to the store to buy Hostess Cupcakes and sit on the curb gorging ourselves on them; he brought me a 12-pack of the goodies, which jump-started my sagging appetite and reminded me of a shared life of love. My sister Kathleen came from Memphis and brought me an inspirational book, plus her inimitable gift of laughter.

And people had enough faith in me to treat me normally, not to coddle me. When I told my brother Ed I was sorry we could not go to Colorado and help build a fence on mountain land we share, he said, “Oh, you wouldn’t have been much help anyway,” in just the way he would have treated me had I not been his Sister with Cancer. He then built our part of the fence himself, so I now have a thousand feet of wood and wire that was built with a good amount of muscle and even more love.

John once asked how I was handling the illness. I told him I was in generally good spirits, but that I had recently been shopping and decided not to buy any clothes because I might not be around to wear them, a truly unusual thought, but one that does still pop into my head when I am not looking. I figure I have the right to be pitiful on occasion. My brother didn’t give into my pathos. “Yeah,” he said. “Better not buy any green bananas, either.” My husband once called my illness “Pat’s little diversion,” showing his own attitude—this was a short-term setback and we would get through it.

My friends, colleagues, students, and the alums who knew of my illness sent cards and flowers, and stopped by to visit, bringing healthy goodies as well as extravagances---coffee mocha, energy smoothies, and fresh fruit. My favorite cards were those that did not allow we to wallow, but told me to kick this thing. One even came with a cutout boot to kick with.

Chemotherapy and radiation, while nobody’s choice of a fun time, were not as difficult as I thought they might be, largely because I was equipped to handle them. My husband made sure I continued to walk two miles a day, except for the day after chemo when I was too weak and nauseated. I walked around the lake by our house throughout the summer with a mixed assortment of children and siblings and I ate well and rested.

I felt completely cherished, safe, and at peace. And I thrived.

My tumor was small and had not spread, so my prognosis is quite good. It was aggressive, though, which is why I needed chemo. Like other cancer patients, I live with the knowledge that the disease can return anytime. Everybody dies of something eventually, though, and we all have challenges and trials, so if this is mine, I will live with it, but my spirit has been strengthened and I feel up to whatever fight I have ahead of me.

Eventually, as I returned to work and the stress and demands of my job as a professor and university administrator, the morning smiles disappeared and I did not even notice. Treatment was over, I was a busy woman, and all that cancer stuff was behind me, so I awoke with a “to do” list and the sense that I was already late for something. I had shut the toolbox and moved on.

Then, in a conversation with a friend who was also dealing with cancer, I mentioned how my smile-a-day had given me strength. That made me realize I hadn’t awakened with a smile in months. It was no longer an automatic gesture, but I missed it. It was time for human intervention. I started to make myself smile upon awakening, no matter what—rain, sleet, snow, or a snoring husband— and follow the smile with, “Thank you, God, for another beautiful day.” And that gives the day a far better chance at beauty. Now, I have added, “Help me use it well.”

And now when I pray, I first offer a prayer of thanks for the tools I have always had but never appreciated fully—my health, that loving family, a mind that can keep me focused in the right direction, enough resources to take care of our temporal needs, and a strong body that I am trying to train to reject any recurrence of cancer.

My diagnosis of breast cancer was stunning, but it was the beginning of a deeper, more fulfilling life. My nightly prayers now include all the women in the world with breast cancer, that they be given the tools they need to combat the disease and live a life of meaning and wisdom.

And I pray that, occasionally, they awake to a smile.

Wednesday, December 26, 2007

The Mystery of the Invaded Breast

I have dealt with my cancer the way Hercule Poirot deals with a murder: I dug in to find the murderer with the hope of putting that culprit out of commission permanently. What was the motive of the invader who gained entry to my body and started knocking off my good cells? How did it get in? Why was I a target? And, most important, how do I keep this clown from returning?

I set myself up nicely to avoid estrogen-positive cancer—I did not take hormones, I breast fed both my kids, and I had no family history of the disease. And, while the plan succeeded on one level—I did not get estrogen-positive—it fell flat in a big way in that I got estrogen-negative, the more aggressive form of the disease. Yea, me. Good move. Why and how did this happen?

When I was first diagnosed, I started a notebook in which I wrote nearly everything my phalanx of doctors told me. It’s a pocket-sized red diary, and I decorated it with a photo of Venus de Milo. (Hey, at least I have my arms.) The first notation, May 16, 2006, is from the radiologist: “Positive for cancer.” “1.5 cm.” “Patricia, it’s not that bad.” Bless her. The last notation, October 13, 2007, is from my follow-up with the surgeon: “Mammo clear.”

The middle of the diary is a bit of a muddle. My docs didn't agree on the size of my tumor. The radiologist used the measurement from the sonogram; one oncologist used the size from the mammogram (2.1 cm); the surgeon and second oncologist used the measurement of the actual tumor itself after surgery (1.3 X 1.1 cm). Because they did not agree on the size, treatment options were all over the board.

And that’s why I started investigating on my own. I felt like I was in one of those eyewitness research studies, in which people observe a fake crime and then are asked to describe the perpetrator: “He was tall, dark-haired, with a beard.” “He was sort of medium height, slim, with red hair, and clean shaven.” “I couldn’t tell his height because he was so fat, but he was definitely blond.” “Are you sure it was a man?”

I needed clarity and information I could trust.

I realized I had to do research on my own to make sense of what was happening and ensure that what I was doing would benefit me long-term. The “right thing” is pretty difficult to determine when you’re learning all about a new disease and faced with treatments that go from nasty to vile. But I have been blessed with a curious spirit and a thirst for information, so I headed to the Internet and found medical studies that helped guide me. I used the Web sites listed on the left, all of which are rich with data, perspective, and hope. I generally avoided chat rooms because they just made me nervous, showing me options I hadn't worried about yet. I have a lively imagination and would probably end up fretting about my cancer spreading all over the place, including the living room sofa.

When I first met my oncologist, I asked for my pathology report and since then I have checked it over so much it is fraying at the edges. Thebreastcaresite.com has a good explanation of how to read a pathology report. I ask for a written copy of every test I have, and I keep a folder on my desk with all this information. I call and ask for clarification of any report that is unclear. My red diary stays in my purse, ready for new data. I check new information against old, to chart my progress, maintain my balance, verify my direction.

I researched Western and Eastern medicine, finding wisdom equally in modern science and in the “alternative” form of older, natural medicine. When the two converged, as they often did in terms of diet, I felt I was truly close to some answers to my mystery. Two books became my guide: Dr. Susan Love's Breast Book and Sat Dharam Kaur’s The Complete Natural Medicine Guide to Breast Cancer . (Buy the first through Dr. Susan Love’s Foundation and part of the money will go to the foundation's research program.)

Through this all, I have learned to be bullish, pushy, and skeptical. Well, I started our skeptical, but this has proven that my care is my own responsibility, and easy answers just don’t fly. Most of all, I have learned to be informed.

I do have to be careful. Focusing too much on a disease makes you think you are the disease. And living my own mystery can be overwhelming.

So it’s time to shut down the computer, do a little yoga, and head to the lake for a walk. I’m not sure I would be doing any of those healthy things, though, if it weren’t for the research I have done that has pointed to their benefit. Perhaps, then, I have found at least some answers to my mystery.

Insulin and Hormone-Negative Breast Cancer

Insulin could be one of many factors in the development of hormone-negative cancer, say investigators on two major breast cancer studies, the California Teachers Study (CTS) and the Women’s Intervention Nutrition Study (WINS).

The CTS found that moderate-to-strenuous exercise is a far more potent deterrent to hormone-negative cancer than it is to hormone-positive. Insulin sensitivity might be why, says Leslie Bernstein, PhD, one of the researchers on the study.

“Women who exercise regularly have lower levels of insulin in their blood,” says Bernstein, director of the Department of Cancer Etiology at the City of Hope National Medical Center. “They are also more likely to maintain normal body weight."

Rowan T. Chlebowski, lead WINS researcher, says insulin might be one reason women with hormone-negative cancer benefit more from a low-fat diet than women with hormone-positive. “Reducing dietary fat reduces insulin and insulin resistance,” says Chlebowski, M.D., Ph.D., of the Los Angeles Biomedical Research Institute.

While the WINS research focused on diet, Chlebowski speculates that weight loss and exercise may be the real keys in reducing risk of recurrence, and both are related to insulin. He is now working on a clinical trial to study the effects of walking a minimum of three hours a week and losing at least moderate amounts of weight.

Neither study connects breast cancer and diabetes and neither suggests that insulin sensitivity causes hormone-negative breast cancer. The basic message here is that everything in the body is connected in some way, and that an imbalance in one area can cause an eruption in another, with cancer as one possible—but not inevitable—result of this internal gurgling.

All aspects of a healthy lifestyle are important in limiting cancer risk, Bernstein says, but the real key is physical exertion. “I think it’s the exercise and I think it works alone,” she says. ‘If it works through weight, it is the exercise that does it.”



The Studies:
Bernstein and her colleagues studied more than 100,000 women over a ten-year span as part of the California Teachers Study . The longer and more strenuously a woman exercised, the bigger the reduction in hormone-negative breast cancer risk, with moderate activity such as brisk walking at least 3.8 hours a week showing significant benefit. The greatest benefit came with more than five hours weekly of strenuous activity such as running.

Roughly 40 percent of the the WINS 2,500 participants followed a diet that kept fat at about 20 percent of their daily calories, an average of 33 grams; 60 percent followed a normal diet, with an average of 51 grams of fat. Cutting dietary fat reduced the risk of recurrence of hormone-receptor-negative by 42 percent after five years. The women, who were all postmenopausal, did not change their activity level; most lost weight.

Wednesday, December 19, 2007

Men and Breast Cancer

Because men aren’t typically known for their estrogen reserves, I figured that the 1500 or so men a year who get breast cancer would get the hormone-negative form. Research published in the Annals of Internal Medicine proves otherwise. In fact, researchers found that 81 percent of breast cancers in men were estrogen-positive, compared to about 75 percent for women.

Still the odds are 100:1 against men getting breast cancer. Those who do are typically slightly older than women at diagnosis, with a median age of 68 compared to 63 for women. As with women, hormonal abnormalities are a risk factor for men; these can be demonstrated by testicular abnormalities such as undescended testes, congenital inguinal hernia, and testicular injury.

Because 15 to 20 percent of men with breast cancer have a family history of the disease—compared to 7 percent of the general population—the researchers suspect that the BRCA1 and BRCA2 genes might be a factor in male breast cancer. Family history was a significant factor if other members were diagnosed before age 50.

Other risk factors in men:
•Infertility;
•Klinefelter syndrome (an extra “X” chromosome);
•Benign breast conditions (nipple discharge, breast cysts, and breast trauma);
•Radiation exposure;
•Jewish ancestry.

I did a little extra research on that last one. According to the the John W. Nick Foundation , an advocacy group focused on male breast cancer, Jewish men most at risk are of Ashkenazi ancestry (Eastern Euopean/ Russian descent) with a family history of breast or ovarian cancer.

Prognosis Better for Hormone Negative

Those of us who have weathered hormone-negative breast cancer get a bit tired of “our” cancer always being called “lethal” and other especially ominous things. So we welcome good news, like this research from France: Women with hormone receptor–negative breast cancer who remain disease-free for five years are 50 percent less likely to relapse than are those with hormone receptor–positive disease, according research presented in Nice in March 2006.

Researchers studied 4404 breast cancer patients who had undergone surgery at the Centre Antoine-Lacassagne from June 1973 to December 2003.

More good news: Overall 86.8 percent of those with hormone-negative tumors were disease-free after ten years. Most recurrences with hormone negative came within the first two to three years.

This comes even with some advanced cancers. Of those with hormone-negative tumors who were disease-free after five years, 35 percent had had lymph node involvements, and 11 percent had grade 3 tumors.

Sunday, December 16, 2007

My Vote: ELizabeth Edwards

Living in Iowa, I am brain-deep in political discussions. In a sea of candidates, one woman who isn’t running stands out as my model for how to live a life—examined and otherwise. Elizabeth Edwards should be elected First Lady no matter who wins the election, just because she has shown what we see too little of in this stressed, too-busy-to-think-straight world: graciousness, personal smarts, and ability to care about the world beyond her small sphere.

Yet, I still hear rumbling that John Edwards should have dropped out of the race once Elizabeth’s cancer returned. I had thought that discussion was over but, in politics, nothing ever seems to be over. My question to people who say this is: And then what? Are John and Elizabeth supposed to skulk back to North Carolina as though getting sick were something to be ashamed of? And what are they going to do when they get there? Sit around wondering and worrying about the big “C” and what it is doing with Elizabeth’s body? If they don’t just sit around stewing, they will have to get involved in some other work to keep themselves vibrant and to use their many talents and gifts. That would then simply replace one pursuit—the presidency—with another one about which neither would be as passionate.

Those of us who have lived through cancer only want our normal back. We know that’ll never happen completely, but can’t we just have part of our lives the way it was before the doctor gave us the bad news? While I thoroughly appreciate the concern others have expressed for me—and cancer really did prove to me how cherished I am—what I appreciate most are those who act like I am still a whole, ordinary person, which I am except for this one slash in my left breast.

Elizabeth Edwards could live for decades, doctors say, so her health should be no more an issue than the health of any of the candidates or their spouses. One of the many epiphanies I had while undergoing treatment was that I could outlive some of the people in my life who were sad for me about my illness but who did not realize they were also about to get sick. Sadly, that has been true in two cases, and I don’t like being right one bit. Still, it proves that life can throw us all for a nasty loop, and we should be judging people by how they can handle the adversity when it comes, not on whether or not it is already here.

Elizabeth Edwards has weathered tragedy that would sideline many of us—the death of her son, the breast cancer and its recurrence—and she has come out it all as a highly functioning human being with a lively brain, sense of humor, and caring spirit. So let her live her life, and let her and John pursue their dream. They’ve been tested. They’ve shown their mettle. That ought to be what really matters.

Thursday, December 13, 2007

Researchers Say Broken Gene Part of BRCA1 Puzzle

New research may explain how the BRCA1 breast cancer gene does its damage. Researcher think the gene, which has been linked to most, but not all, cases of triple-negative cancer, may mutate because of a break in another gene that stops cell growth. Women inherit BRCA1 and may also inherit its tendency to weaken the PTEN gene, which can help suppress tumor growth, according to researchers at Columbia University, working with scientists at Sweden’s Lund University.

In 30 to 50 percent of BRCA1 tumors, the PTEN gene is physically broken in half.

What does this mean? It explains, once again, that not all cancers are created equal, and even some forms of triple-negative have a different genetic makeup. Drugs now being developed can help activate PTEN, which may not lead to a cure, but offer an option for treatment now not available to women with this form of the disease, often called basal-like breast cancer (BBC).

The scientists presented their findings in the December issue of Nature Genetics

Read more about this on MedicineNet.com

Wednesday, December 12, 2007

Body to Pat: Pay Attention

For most of my life, I have been oblivious to myself. Sure, I was pretty confident about who I was; I knew I was smart, capable, funny, but I knew this on an intellectual level, not an emotional or, most important, a physical one. In the 15 months before I was diagnosed, I had four bladder infections. Intellectually I knew something was wrong with my system, but I sped on with my life without spending too much time thinking about just what was going on, just what was wrong with my body to make it get this kind of infection over and over.

I did a certain amount of research and determined that, most likely, my diet was the problem. One infection came on fairly quickly and ferociously a half-hour after I had a completely satisfying cup of Irish coffee. I checked my natural healing book and, sure enough, coffee, alcohol, and sugar are high on the list of ingredients for a bladder infection. So, not being a complete dummy, I stopped drinking Irish coffee, but I did not consider the deeper issue: Why did my body react so quickly to those ingredients?

I sort of asked those questions, but I did not force the answer. Likewise, I did sort of lame breast exams, but did not really take them that seriously. Certainly, smart, capable women like me did not get breast cancer. We have better things to do. So, when I felt a small lump, I did not take it that seriously, figuring it was just a fluke that would go away. Because I was so derelict in doing exams, I was not even that sure what was usual and what was not.

I suspect I am like others who feel they need to control their destiny—it’s not just that I think I know best and the world would be wise to take my counsel. It’s also that I am terrified of what will happen if I let down my guard—I’ll go hurtling down a metaphorical cliff into the abyss of the soul. Splat.

Luckily, that small lump came right before my yearly gynecological physical. The doctor, also a smart, capable woman, found it, sent me in for a mammogram and made an immediate appointment for me with a surgeon. The medical pros, then, found what I had been ignoring.

So, this has all made me pay more attention to the physical me, to be attuned to my body. And, oddly, I no longer fear the self-exams, as I now know that if I find something, I just deal with it, the way I did with the first lump.

I completely changed my diet, emphasizing lots of vegetables, a good amount of fruit (not too much because fruit is high in sugar), three decent meals a day plus a healthy snack between each one (broccoli in hummus, homemade trail mix), complex carbohydrates, and a small amount of protein. I have alcohol once or twice a week—rather than the one or twice a day that used to be my norm—and I have limited my caffeine.

I still occasionally get a bladder infection, but it’s usually when I completely go off my diet and that happens less and less. I now can tell when one might be coming because I am finally attuned to my body and I can usually avoid it by dealing with it homeopathically.

Tuesday, December 11, 2007

African-American Women at Greatest Risk

Women who are under 40, African-American, or Hispanic are most at risk of triple-negative breast cancer, according to research published in the May 2007 issue of the journal Cancer. Around 15 percent of breast cancers are triple negative—lacking markers for estrogen receptors (ER), human epidermal growth factor receptors 2 (HER2), and progesterone receptors. Researchers identify these cancers as basal-like subtypes.

In the study, African-American women were at highest risk—their cancers were more likely to be diagnosed at a later stage and they had a five-year survival rate of only 14 percent. The comparable five-year rate was 36 percent for white women and 37 percent for Hispanic women with the same stage and receptor status cancer.

Scientists have previously speculated that breast cancer is biologically different in African American women, which may be why they are more likely to get one specific form of the disease. The fact that Hispanic women also tend to get triple-negative adds a new dimension to the issue, which may help narrow future research into what causes breast cancer in specific women, says Katrina Bauer, research scientist at the California Cancer Registry and lead researcher in the study. “We can no longer think of breast cancer as one disease,” she says.

Here's Motivation to Drop Those Pounds

A new study shows that post-diagnosis weight gain can increase the risk of death from breast cancer, although researchers did not narrow the effects based on receptor status. Women who gained more than 22 pounds after diagnosis were 83 percent more likely to die of breast cancer than those who stayed within five pounds of their original weight, according to Hazel B. Nichols, a doctoral student in epidemiology at Johns Hopkins Bloomberg School of Public Health in Baltimore. Women increased their death risk by 14 percent for every 11 pounds they gained after diagnosis. The study, party of the continuing Collaborative Women’s Longevity study, looked at the body mass index(BMI) of 4,020 breast cancer patients from 1988 to 2001. Those categorized as obese—having a BMI of 30 or above—were 2.5 times more likely to die of breast cancer.

Nichols says receptor status was not required information in the statewide cancer registries on which the study was based, so that data was not available to researchers. Exercise and diet, however, have both been previously connected to hormone-negative breast cancer. The Women’s Intervention Nutrition Study(WINS), which I have written about in previous posts, saw a 42 percent reduction in recurrence among postmenopausal hormone-negative patients who ate a low-fat diet. And the California Teachers Study found that long-term exercise—both strenuous (like running) and moderate (a brisk walk)—were associated with reduced risk of estrogen receptor-negative tumors. No amount of exercise affected the risk for estrogen receptor-positive tumors.

Monday, December 10, 2007

A Word About Percentages

When researchers say you can reduce your risk of recurrence by, say 50 percent, they mean 50 percent of your original prognosis. That is, docs base your specific chance of survival on the size of your tumor, its grade, receptor status, and whether or not it has spread.

So, say they give you an 80 percent chance of survival; you have a 20 percent chance of recurrence. If you eat a low-fat diet that reduces your recurrence rate by an additional 42 percent, you cut an additional 8.2 percent off (20% X 42%), so your likelihood of recurrence is cut to 11.8 percent (20%-8.2%).

And, the worse your initial odds, the more payoff you might get from modifying your diet. For example, if you have a 50-50 chance and you opt for the low-fat approach, you can cut your chance of recurrence to 29 percent (50% X 42% = 21%; 50% - 21% = 29%), which makes all those carrots and apples worth a serious try.

Thursday, December 6, 2007

Reduce Recurrence: The Buzz from the White Coats

Medical researchers are digging into ER- and PR- negative cancers and finding good stuff about treatment and follow-up care.

A diagnosis of any kind of cancer is terrifying. A diagnosis of hormone-negative can be especially traumatic, because the typical follow-up care—tamoxifen or arimidex doesn’t apply here. These are anti-estrogen drugs and offer little help to a cancer not fueled by estrogen.

So what can you do? Take chemo—it works better against the negative nasties than against the positive. And eat well and exercise. You can reduce your risk of recurrence by 40 percent by eating a low-fall diet. And strenuous exercise significantly cuts the risk of getting ER or PR-negative in the first place. Docs say it makes sense that it can also reduce recurrence.

Read on for some of the current studies that specifically deal with treatment and follow-up care for hormone-receptor-negative breast cancer. As I find something new, I will post it.

CHEMO: NASTY STUFF, BUT IT WORKS
Advances in chemo within the past 20 years have upped its success rate for hormone-negative cancer with only negligible improvement for hormone-positive. Newer forms (high-doses of cytoxan and adriamycin every two weeks plus taxol) reduced the risk of death by 55 percent as compared with older forms (low-doses of cytoxan and adriamycin plus fluorouracil every three weeks) in women with hormone-negative cancer that had spread to the lymph nodes.

That means a five-year overall survival rate of 83 percent (compared to 66 percent for older forms) and a five-year disease-free survival rate of 73 percent, (compared to 50 percent.)

So look at that: Almost three-quarters of the women with hormone-negative cancer that had spread to the lymph nodes who had chemo were disease-free after five years. That’s disease-free, in case you missed it. Disease-free! So chew on that for a while. And, remember that death stats don’t necessarily mean death from cancer. You can have the bad luck to survive cancer and still get hit by a falling piano. So deal with the chemo, and watch your head when walking through a cartoon.

Read More About This At
Journal of the American Medical Association, April 12, 2006

Chemo before surgery is also a shot in the arm—or, in this case, a syringe—to hormone-negative patients. More than 75 percent of women with aggressive, hormone-negative cancer who had chemo before surgery saw their tumors shrink by more than half; in 20 percent of the cases, the tumors disappeared completely!

Read More About This At
European Journal of Cancer, January 2004

DIET—DO IT
Reduce your daily intake of fat to about 20 percent of your total intake of calories—to about 33 grams of fat—and you can significantly reduce your risk of recurrence. Doctors studied 2437 postmenopausal women with early-stage cancer for ten years. Women with both hormone-positive and hormone-negative cancers benefited from the change in diet—9.8 percent of those on the low-fat diet had their cancer recur, while 12.4 percent of those on a standard diet—about 51 grams of fat—had theirs recur. Women with hormone negative benefited the most, with a 42 percent reduction in recurrence. That’s a pretty impressive number. Researchers note, however, that because hormone-negative is less common than positive, the percentage of women in the study who had hormone-negative was relatively low, making the results in our case exploratory—they’re continuing to study the relationship between diet and hormone-negative cancers.

Read More About This At

Journal of the National Cancer Institute, December 2006

Don't Have It? Take Care to Not Get It

I have wasted a good deal of time wondering and worrying about what I did to cause this disease. My mistakes, it appears, range from choosing the wrong genes at birth to breathing the wrong air and eating the wrong food. If I look at genetic research, I was destined to get this somehow somewhere, which makes me think I should never have given up chicken-fried steak. Oooohhhhh. Chicken-fried steak…. Anyway, If I look at other research, I know that eating healthy helped me recover quickly and will help reduce my chances of recurrence.

I have long had an image of life as some sort of boogeyman hiding behind a tree; as we walk past, just doing our la-la-la-la thing, life jumps out and says “bogabogaboga!” And why it is behind that tree at that time, who knows?

So, I try not to stew too much about what I cannot change anyway. I got sick and that’s that. I am doing all I can to not get sick again, to not blame myself for the flawed life I led.

Still, for those I love—and even those I barely like—there are things that can reduce the likelihood of getting this form, and perhaps other forms, of cancer.

EAT YOUR FRUITS AND VEGGIES
Get this: If you are postmenopausal, your carrots and blueberries can reduce your chances of getting hormone-negative breast cancer in the first place. (If you’re premenopausal, the effects no doubt are still there, but the docs in this case did not specifically study that.) One serving of vegetables a day can lead to a 6 percent reduction in risk of getting ER-negative cancer; each serving of fruit can give you a 12 percent reduction in risk. That is one serving. So, if you eat a healthy diet with two servings of fruit and three of vegetables a day, you can reduce your risk of getting this form of cancer by 40 percent! (2 servings of fruit [2X12]=24. 3 servings of vegetables [3X6]=18.)

Read More About This At
The Journal of Nutrition, February 2006

RUN FOR YOUR LIFE
Strenuous long-term activity like swimming or jogging for five hours a week can reduce incidence of hormone-negative. The study—the California Teachers Study—surveyed more than 100,000 women of all ages and found a strong link between strenuous activity and reduction in incidence of ER-negative cancer. The influence of moderate activity is not as clear.

Read more about this at
The Archives of Internal Medicine, February 26, 2007

Or on the National Cancer Institute site:
National Cancer Institute

"Pat’s Breast Is Here”

My breast has been handled by so many people you would think I spend a typical day in an Amsterdam window. Instead, during the summer and fall of 2006, I spent a typical day in the John Stoddard Cancer Center at Iowa Methodist Medical Center. My left breast became the darling of Des Moines’ radiologists, surgeons, oncologists and radiation technicians. They pricked it, sliced it, shot blue dye into it, and zapped it.

I became a breast with legs. When I arrived for a doctor’s appointment, I began to feel that I should announce, “Pat’s breast is here” and the receptionist would say, “Tell it to have a seat. The doctor will be right with it.” The rest of me could have stayed home.

The rest of me, though, held the power—the power to heal, to build strength, to fight the disease, to survive. Doctors focus on the disease, as well they should. I had a sick breast and their job was to heal it. In their medical myopia, though, they overlooked the tools I could use to regain my health: a positive attitude, loving family and friends, internal strength, and a good mind that would help me do the research I needed to understand my body and its disease.

The more I studied, the more I realized that, while breast cancer grows, obviously, in the breast, its origins can be in the way you live your life—how you eat and drink, how much you exercise, the stress you live with, your spiritual state. Healing the tumor, then, means healing the whole body.

Some of my doctors did understand that I was more than the sum of my mammary glands. The radiologist who first called to tell me the bad news said, “Patricia, this is not that bad.” I come back to those encouraging words over and over and over again. I wish I had asked her to tell me the many ways in which it was not so bad, but at that time I was too ignorant to know what questions to ask. I did ask if she meant the size and she said that, yes, it would be considered early stage cancer.

When I first met my radiation oncologist, she looked at my charts and examined me and explained everything I needed explained. Then she looked at me and said, “Your prognosis is excellent.” Those were also words I came back to again and again.

My oncologists, however, were more scientific, less personal. One told me my cancer “was on the march.” I felt like Poland, being invaded by cellular Nazis. They all emphasized the aggressive nature of hormone negative cancer and said it required aggressive chemo.

I am sure the chemo helped. What helped as much, if not more, I am absolutely sure, is the belief I had deep inside me that I would get well. The doctors who gave me hope helped my full-body healing process. Those who saw no farther than a tumor in a breast took care of the tumor in the breast, period. Perhaps that was enough, but I do not think so.


I am glad treatment ended with radiation, because the radiation staff treated me as a whole person. I got to know them well because I visited them every working day for six and a half weeks. They all learned my name, so when I walked in for treatment, I just had to wave and walk back to change into my hospital gown. They even laughed with me about their fixation with my breast. After my final treatment, they gave me a diploma. The next day, my husband and I headed for two weeks at our Colorado cabin.

Because I trusted my radiation oncologist, I asked her to manage my continuing care. She agreed.

I returned for my first follow-up appointment a month after my final radiation. I walked in and the receptionist smiled and said, “Hi, Pat. How was Colorado?” We chatted briefly, then she called back to the other nurses and radiation specialists: “Pat’s here,” she announced, as though it was a big deal.

And I guess it was, because at that point, I realized that these people saw me as more than a body part. The doctor even spent time looking at my vacation pictures, showing real, not feigned, interest. She knew that the ability to hike, to relax on our deck, to watch animals was just plain normal. And normal is what my breast and I needed to be.