What's the proper follow-up after breast cancer treatment?

What type of treatment do you absolutely need once you finish breast cancer treatment? How much is too much? What’s too little? And what about diet and supplements?

Three doctors recently discussed helping patients stay healthy after breast cancer.  Their discussion, available through Medscape,  helps answer some of these questions. 

Participants were:

Antonio C. Wolff, MD, FACP, Associate Professor of Oncology, The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University, Baltimore, Maryland

Jennifer A. Ligibel, MD, Instructor in Medicine, Harvard Medical School, Boston, Massachusetts; Staff Physician, Dana-Farber Cancer Institute, Boston, Massachusetts

Anne F. Schott, MD, Associate Professor of Medicine, University of Michigan, Ann Arbor, Michigan; Staff Physician, University of Michigan Health System, Ann Arbor, Michigan.

My take-away points on all this:

• Most women with a diagnosis of breast cancer will survive their disease and go on to live full lives.

• Follow-up visits every 3 to 4 months for the first two years after completion of treatment is standard. This can be with an oncologist, radiation oncologist, surgeon, or a primary care physician. Usually it is a combination of the above.

• A mammogram at least yearly is recommended.

• The American Society of Clinical Oncologist guidelines recommend against “any surveillance blood testing or imaging studies in an otherwise-asymptomatic patient with a normal clinical exam.” Translation: If you do not have symptoms or problems, the recommendation is that there is no need for additional tests. Doctors often do testing to reassure women, although the reassurance, apparently, is not all that substantive.
That includes x-rays, PET scans and CT scans.

• Even though studies have not been conclusive, there’s enough evidence to support the benefits of low-fat diet and exercise in limiting risk of recurrence.   A low-fat diet is especially important for hormone negative breast cancer.

• Vitamin D is beneficial, even though research so far is not clear on its benefits to reduce risk of recurrence and on the dosage necessary. It has been shown to reduce bone loss.

• Carbohydrate-restricted diets like Atkins are not good for breast cancer survivors, especially those with ER-negative tumors.

Check Out the Triple Negative Foundation

The Triple Negative Foundation has an online replay of an educational teleconference on triple negative breast cancer. The foundation’s site also offers the opportunity to talk with experts and other women with triple negative breast cancer. The foundation was started in 2005 to honor Nancy Block-Zenna, who was diagnosed at age 35 with triple negative breast cancer and died in 2007. Nancy's friends launched the TNBC Foundation to raise awareness and support research on triple negative breast cancer. Check it out.

My Story: Weight Loss Through Diet Change

First: Don’t diet. Dieting implies a short-term change built on forcing yourself to eat unnaturally. A boiled egg for breakfast, yogurt for lunch, salad for dinner. Nobody can sustain that. You’re so hungry that when you see a Snickers, you head for a corner and snarf it down. And even if you conscientiously stick to the diet plan, you face trouble when you return to “normal” eating. Remember normal eating? That was what caused the weight gain to begin with.

Losing weight comes from changing your attitude toward food. Food is a source of energy and health, not a reward or a way to kill time. And eating healthy doesn’t mean you’ve ruined the social aspects of food. You can enjoy a convivial visit with friends over a well-balanced meal. And eating healthy can be every bit as satisfying as eating the fatty stuff.

The pleasures of overeating are fleeting, but the results long-lasting.

Some tips:

1. Create a spreadsheet and write down everything you eat. I focused only on calories, to simplify things, but I kept my eyes open to foods that were high in sodium or sugars. You’ll be surprised at how much the little things add up. Use a site like caloriecount.about.com to help you find nutrition information on the foods you eat. For example, that Snickers bar has 271 calories, 122 of those from fat. One bar has 26 percent of your daily recommended allotment of trans fat. It has a substantial 28.8 grams of sugar. Dieticians recommend that you keep sugar under 48 grams a day, so a Snickers gives you more than 50 percent of that. Think about it: Look at the fleeting pleasure, the lasting damage.

2. Be honest in the spreadsheet. If you have a glass of wine, look at the size. Five ounces of red wine have roughly 147 calories, according to the USDA. Yet, do you limit yourself to that small a portion? My wine glasses contain eight ounces, and I tend to fill them up, which raises the calorie count to 235. The larger glass then, has 88 more calories. In 40 days that extra wine will turn into a pound of fat. That’s nine pounds a year.

3. Remember the math. One pound equals 3500 calories. The average moderately active adult woman should consume 1800 to 2200 calories a day; moderately active adult males can consume 2200 to 2400 calories a day. If you cut 100 calories a day, you will lose one pound every 35 days. Likewise, if you add just 100 calories a day—about a third of a Snickers— you will add a pound every 35 days. I am here to tell you that it does add up, slowly, and with great chubbiness.

4. Replace high-fat habits with body-pleasing options. Before I turned healthy, I started each Sunday with two chocolate long johns and a Diet Coke. At the beginning of my weight-loss program, I cut this down to one long john and a Diet Coke. Eventually, I cut out both pastries and the Diet Coke. Instead, I now have whole wheat toast with cinnamon sweetened with Stevia. Cinnamon is an antioxidant, Stevia is a natural sweetener, and whole wheat can cut your breast cancer risk. I drink black cherry juice or decaffeinated coffee sweetened with natural agave juice. And I am fine with it. I do not feel like I am sacrificing treats at all.

5. Eat breakfast. The Weight Control Registry monitors people who have lost more than 30 pounds and kept it off for more than a year. Seventy-eight percent of respondents eat breakfast every day. Breakfast gets you going with energy, balances your metabolism, and keeps you from getting too hungry and overeating. I actually eat two breakfasts. I start with organic oats with blueberries and almond milk. In mid-morning, I drink a smoothie.

6. Smoothies are wonders. You can pack healthy goodies into a blender and make enough ahead of time for two to three days. I sip on the smoothie when others are drinking high-caffeine, high-fat coffee drinks. My recipe is simple: fat-free yogurt, a banana, green tea, black cherry juice, and whatever fruit I have on hand, usually some type of organic berries, either fresh or frozen.

7. Keep healthy snacks on hand. I have a mid-afternoon snack of organic broccoli dipped into hummus. I make a trail mix of pumpkin seeds, sunflower seeds, organic raisins, organic unsweetened dried cranberries, and almonds. You need no extra salt or sugar. I sometimes get fancy and buy yogurt almonds. I keep a Baggie of this in my purse for snacks whenever. Sometimes I mix it with broccoli for a truly yummy snack. I also like strips of green or red peppers, both powerful antioxidants high in Vitamin C and E

8. Keep unhealthy foods out of reach. Keep them out of the house if possible. I love peanuts and potato chips and tend to lose control when eating them. My husband has more sense and keeps them in his basement office drawer. I know where they are but have enough dignity to keep from stealing them from his office. I mean, really.

9. Eat at home. Restaurants are full of temptations, and there’s a reason they taste so good. Wonder why the pasta is so much better at your favorite Italian bistro than at home? Butter. Lots of it. You’re far more likely to maintain a healthy diet at home.

10. A low-fat diet can help reduce the risk of recurrence of hormone-receptor-negative (HR-)breast cancer, the type I was diagnosed with in 2006, according to the Women’s Intervention Nutrition Study (WINS). A low-fat diet—of 32 grams a day, or roughly 20 percent of your daily allotment of fat—caused women not only to lose weight, but to lower their risk of breast cancer. Those with HR- reduced their risk of recurrence by an impressive 42 percent. Women with hormone-receptor-positive breast cancer (HR+) also benefit from lower weight, according to a more recent study published in the November 26, 2008 issue of the Journal of the National Cancer Institute. The study, of 280,000 postmenopausal women, showed that the risk of breast cancer increased with weight gain.

11. Weigh yourself regularly. I do it daily and find it a significant motivator. If I am up more than three pounds several days in a row, I up my exercise and cut my calories until I get back down.

12. Exercise. Diet alone is usually not enough. Ninety percent of Weight Control Registry members exercise an average of an hour a day. I don’t do that much—I try for four hours a week.

My Story: Weight Loss Through Exercise

What I learned by using exercise as one tool to lose weight (with special thanks to the trainer who helped me succeed):

1. My pleasant strolls around the lake with my friend were lovely, but they were doing nothing for my cardiovascular system and were not helping me with weight loss. To be beneficial, exercise has to increase your heart rate. My goal was to get my heart rate up to 120 at least mid-way in a walk, and keep it there most of the way. That transformed my 45-minute stroll around the lake into a 30-minute workout.

Some tips on heart rate:

• Adults typically have a resting heart rate of 60 to 100 beats a minute. The lower the number, the better.

• On the other end of the spectrum is your maximum heart rate. Determine this by deducting your age from 220. I began my program at age 59, so my maximum heart rate was 161.

• When exercising, your aim should be reaching 60 to 80 percent of your maximum heart rate. My goal of 120 was about 75 percent of my maximum.

• It’s simple to measure your heart rate: Find the pulse point in your wrist or your neck until you can feel your pulse regularly enough to begin counting. Time yourself for 15 seconds. Multiply that by 4, to get the rate for a minute, or 60 seconds. If your rate is 30, your heart rate is at 120. A heart rate monitor can do this electronically, but your finger is cheaper and needs no batteries.

• Don’t overdo it. If you exercise at 85 percent or higher, you can do damage to your heart and your bones.

• Check with your doctor before getting started to make sure you have no health risks that would affect your exercise.

2. When I reached a goal, it was time to push myself more, not sit back and congratulate myself. If you want to continue losing weight, you have to keep increasing your exercise. Be reasonable. If you walk 30 minutes a day, add another five every two weeks or so. You can stop the increases once you have met your goal. At that point, keep exercising at the same rate to maintain that weight loss. Same thing with lifting weights. If you have been lifting 20 pounds at ten counts, gradually add more counts and more weights—first, go for 12 counts at 20 pounds, then 15 at 20 pounds. Then add five pounds and start the process again with ten counts at 25 pounds.

3. I had to listen to my body and do what it could handle. I tried jogging and liked it for a while—mostly I liked that I could do it. Eventually, though, my bones began to hurt and I had to be honest that it was just too jarring for my body. It helped me lose the weight, but I do not need it for maintenance. Occasionally, I run for a minute or two during a walk, just to get my heart rate up, but I do not try for any significant length. I am not opposed to jogging—for others. I just know it is not for me, and I know that if I hate doing something I will simply avoid it. I love walking and hiking, so that is my exercise of choice.

4. I don’t let myself get lazy. I stopped working with the trainer after a year, but I still have him in my head—it’s as though he’s sitting on my shoulder. When I am on a hike and think it is time to rest, or stop altogether, my interior voice tells me to keep going just a bit longer, push myself just a bit more. I have learned I can. And I am pretty doggone proud of that. And thankful.

My Story: Healthy Weight Loss

I weigh the same today as I did 25 years ago. In between, though, I gained and lost 50 pounds. Losing that weight, I am sure, helped me beat the breast cancer I was diagnosed with in 2006. And research shows that the exercise plan and low fat diet I adopted can help keep my cancer from returning.

So, yea for me for losing the weight. Why, though, did it take me so long to get to it?

The weight began creeping up in my early 40s when I started teaching. I loved the work, but it was exhausting while not being much of a workout; I spent hours at a time sitting and grading papers. I went home too pooped to exercise, but eager for a glass of wine and some comfort food. I went from a size 10 to a 12, 14, then 16.

I tried to diet. I would lose a few pounds, then gain them right back. It took me two months once to lose ten pounds. I regained it in two weeks. Clearly losing weight was impossible.

Then came my wellness exam of 2005. It did not go well. My blood sugar was high enough to put me at risk for diabetes, My cholesterol had spiked. And my weight was at an all-time high. My body mass index was 29.5—just .5 short of obese. I was a hair’s breadth away from being plain old fat and it was affecting my health.

I was 50 pounds overweight. I was carrying the equivalent of a four-year-old child of extra fat.

Plus, I was getting urinary tract infections as much as four times a year. I did research and was sobered by the fact that these can be a sign of immune system problems and diabetes. An out-of-whack immune system, I am sure, was one cause of my cancer.

When I got the written report than follows up the exam, nearly all of the ten pages listed one health risk I faced: diabetes, heart attack, cancer, stroke, you name it. Each page had the same reminder: “This would be improved if you would lose weight.”

Never before had I been given that message so blatantly: Lose weight if your health matters to you.

I considered my options. I wanted to focus on exercise as much as I could. I had always been active and enjoyed the outdoors and I wanted to enjoy hikes in the mountains again without puffing. But I knew I needed to eat less as well. And I knew I needed a system to keep me in line, to keep me in track.

Several friends recommended a personal trainer. One had lost 100 pounds working with him and was now running marathons. That had appeal, but the cost was high--$1500 for twice-weekly sessions for five months.

A colleague, though, reminded me that $1500 wouldn’t even cover my deductible if I had a heart attack. That was the permission I needed.

Rather than a luxury, I considered Tim Ives, my trainer, an investment in my health. He helped me drop the pounds gradually and, more important, keep them off.

And he taught me to change my perception of what I could do.

I learned that losing weight is a process that simply takes time and commitment. I began to actually work out—lifting weights, jogging, and walking briskly at least four hours a week. And I dieted. I limited myself to 1200 calories a day and kept track of them religiously. I usually lost weight consistently, but occasionally I would step on the scale and be a pound or two over. I was thrown, but I didn’t give up. I kept at it and the pounds dropped off.

I was paying a trainer good money. I was determined to show a benefit. Plus, I made a big deal out of the fact that I was going to lose weight. I had made a commitment in front of friends, family, and colleagues. And research shows that I did two things right: I got help, rather than trying to go it alone. And I went public. Both made me accountable for my weight loss.

When I signed up, I told Tim I wanted to lose 20 pounds. When I hit that level, I kept going because I had simply changed the way I lived. I plateaud  at 50 pounds and stayed there. It feels like I am where I should be.

There are far cheaper ways to do much the same thing, such as group trainers, online supports like caloriecount.about.com, and weight loss group like Weight Watchers. Tim was valuable, though, in educating me about how to benefit from exercise and how to keep from hurting myself. I had once tried a do-it-yourself exercise regimen and threw out my hip, sidelining me seriously for weeks and costing me a nice chunk of money for physical therapy.

Plus, Tim pushed me and didn’t let me slow down when things got tough. He showed me that I could do things I never thought possible. Bench press? Me? I was almost 60 and I had never lifted a weight in my life. High time, Tim said.

Tim weighed me every week and wrote down the results. With him watching and recording, I was embarrassed when I didn’t lose. More motivation.

The change in my diet was all my own.

On most days, I gave up butter, salad dressing, bread, dessert, fried foods, and cream sauces. I ate lots of vegetables and a good amount of fruit. I drank much water. Occasionally, though, I allowed myself a treat, because I could not stick to a diet that was too austere.

I never veered off the exercise, though. I took one day off a week, but adamantly laced up my running shoes on all other days.

I’ve lost that four-year-old child I used to carry everywhere and I’ve kept her off for nearly two years. As a result, exercise is easier and more fun. I hike quicker and easier, with far less puffing. This summer, I made it up the mountain by our Colorado cabin, my original goal when I began working with Tim. I was two years late, the cancer throwing me off a bit.

Exercise and eating right have become a new way of living, not a short-term change. I know I can never go back to my life of literally chewing the fat and spending my days in a desk chair. But feeling healthy and energetic and looking at myself in a size 10 is more important than the taste of any hot fudge sundae. Well, usually.

For details on how I did it, read My Story: Weight Loss Through Exercise and My Story: Weight Loss Through Diet Change.  

Treatment options for early-stage breast cancer

Curetoday.com  has a thorough article assessing the different treatments available for early stage breast cancer.  It does a nice job of explaining how options differ between hormone-negative and hormone-positive.  Complex stuff, so you might want to print it and take it with you to your doctor's appointment. 

High-Fiber Bread Associated with Reduced Hormone Negative Risk; Fried Potatoes Associated with Increase

I grew up loving white bread—a piece of lunch meat, some mayo and good old Wonder bread was my idea of the best grade school lunch ever. Yummm. Add some potato chips and it didn’t bother me that I had just tried to recite Joyce Kilmer’s “Trees” and kept starting at the last line and Sister Mary Schoolteacher made me sit down in humiliation. (I kept starting with the final line: “Poems are made by fools like me.” No doubt Sister thought, “Fool indeed.”)

It took me decades to get to truly like whole wheat bread. Fried potatoes remain one of my favorites, although I seldom eat them now. And now I can Google the words to “Trees.” (See below.)

New research shows that I was absolutely on the wrong track for most of my life, but my post-cancer diet is right on the money. Swedish researchers monitored the diets of 544 women for 10.3 years. They discovered that those with a diet that regularly included high-fiber bread had a significantly reduced risk of breast cancer—both hormone negative and hormone positive.

Fried potatoes were significantly associated with an increase in hormone negative breast cancer. Their research was published in August in the journal Carcinogenesis.

So, cut the French fries and chomp on whole wheat bread. Chances are you’ll feel better, fight cancer, and lose weight. Had I done that, maybe I would have recited the poem correctly.

Trees
by Joyce Kilmer

I think that I shall never see

A poem lovely as a tree.
A tree whose hungry mouth is prest

Against the earth’s sweet flowing breast;
A tree that looks at God all day,

And lifts her leafy arms to pray;
A tree that may in Summer wear

A nest of robins in her hair;

Upon whose bosom snow has lain,

Who intimately lives with rain.
Poems are made by fools like me,

But only God can make a tree.

Caffeine Might Increase Hormone Negative Risk

The more caffeine you drink, the higher your risk of hormone negative breast cancer, according to a study published in the October 12, 2008 Archives of Internal Medicine. The research was part of the Women’s Health Study, with 39,310 participants who filled out a comprehensive questionnaire on their eating habits. This study looked at the links between caffeine intake—coffee, black tea, and colas primarily—and breast cancer.

Researchers assumed that the content of caffeine was 137 mg per cup of coffee, 47 mg per cup of tea, 46 mg per can or bottle of cola, and 7 mg per serving of chocolate candy.

The big caffeine Kahuna here, then, is coffee.

Twenty-four percent of the women never drank coffee; 13 percent drank less than a cup a day; 14.2 percent had two to three cups a day, and 15.4 percent had four cups a day. Yikes!

No matter the quantity, though, caffeine had no significant effect on hormone positive breast cancer. But the risk of hormone negative does go up with each cup of coffee. Likewise, the chance of having a tumor larger than 2 cm went up with increased coffee consumption.

Still, as is the case with many breast cancer studies, the number of cases of hormone negative breast cancers was so small that researchers didn’t have enough data to state conclusively that high caffeine leads to hormone negative breast cancer. These findings, they say, may be “due to chance and warrant further study.”

Until the data are in, though, it might be best to cut the coffee.

And, on a side note, most media notices I have read on this focus on the fact that caffeine does not lead to breast cancer, once again making generalizations about breast cancer while ignoring hormone negative.

Plastic Bottles May Hurt Cancer Treatment

Bisphenol A, (BPA), a chemical found in a number of plastic products, can reduce the effectiveness of chemotherapy treatments on breast cancer, according to a study reported in the October 8, 2008 online edition of the journal Environmental Health Perspectives. Researchers at the University of Cincinnati subjected breast cancer cells to low levels of BPA, similar to levels found in the blood of humans. They found that BPA mimics estrogen, which can protect cancer cells from the effects of chemo, thus reducing chemo’s strength. Estrogen has been previously linked to chemotherapy resistance, but researchers have wondered why post-menopausal women can also be resistant. This study might provide some explanation for that connection. It might also be provide some answers for hormone receptor negative cancer.

BPA is found in drinking bottles and the lining of food cans. Some experts recommend avoiding plastic bottles marked with the recycling symbols 3,6 or 7. Others say all plastic, even that promoted as being BPA-free, is suspect and can leach dangerous estrogen-like chemicals.

Obama and McCain On Coverage of Pre-Existing Conditions

Several organizations and publications have evaluated the health care plans proposed by John McCain and Barack Obama recently.

In its November 2008 issue, Consumer Reports compared the two based on real-life needs. One scenario presented the case of 59-year-old Susan Braig, a self-employed artist and grant writer who was diagnosed with breast cancer in 2004. Her current insurance costs only $2,496 a year, but when she was sick, it did not cover chemo and other out patient treatments, leaving her $40,000 in debt. Consumer Reports looks at how McCain and Obama would cover her and offers this bottom line:

Obama would probably do more to cut costs and improve coverage for those like Braig with limited income or a poor health history.   Among other things, he’d prohibit insurers in the individual and small-business market from selling plans with coverage with loopholes like those in Braig’s plan.

In a comparison chart, the magazine looks at the “Ability to get coverage regardless of a pre-existing condition” and says:

MCCAIN: In McCain’s deregulated market, insurers could choose whether or not to cover pre-existing conditions, so rules would vary from policy to policy. People with health issues could instead apply for coverage under a federal-state GAP plan. The campaign promises GAP insurance will be comprehensive and affordable but has offered few details. Existing high-risk pools tend to be costly.

OBAMA: Obama would explicitly require insurers to cover pre-existing conditions. The campaign says those policies would be affordable, since its plan would make the health system more efficient and cut $2500 yearly from the average family’s bill. It offers no specific calculations to support that number, however, and others say costs would go up since more sick people would be covered.

Mary Carmichael, in Newsweek’s October 6 issue, asked Katherine Swartz, a professor of health policy and economics at Harvard, to compare the two programs. An excerpt:

Can you explain McCain's plan to help out people with previously existing conditions by expanding "high-risk pools"? 
We've had state-sponsored high-risk pools for several decades, but they cover fewer than 200,000 people. They were set up so insurance companies could essentially cede people who they predicted would have very high health-care costs. At one point McCain said he would subsidize high-risk pools with between $7 billion and $10 billion a year. That would cover maybe 3 million people, which is not much of a dent in the 47 million people without insurance now.

Obama would also require insurers to cover people with pre-existing conditions. Wouldn ' t insurers raise premiums?
Yes, premiums may be higher. I think people need to consider the alternative—if patients are closed off from coverage, they still go to the ER, and we all pay for that.

The Kaiser Family Foundation gives a side-by-side comparison of the two candidates’ plans. It doesn’t provide a specific category on pre-existing conditions, so it says nothing about McCain’s plan in that respect, saying only that Obama would “Prohibit insurers from denying coverage based on pre-existing conditions.”

Thriving, Not Surviving

I attended a breast cancer survivor’s luncheon today, met a good group of women, and had a surprisingly lively conversation about chemotherapy, oncologists, wigs, and how it feels to be a survivor. Many of us, though, object to being called survivors. “I’m a thriver,” one woman said. I like that. It’s active rather than passive. I can choose to thrive, but calling me a survivor only means I didn’t die.

“Hi, I’m Pat. I’m not dead.”

My friend Diane says she hopes that, of all the dimensions that define her, the fact that she is alive should not be at the top of the list. It’s great, and she likes it, of course, but she’s also smart, accomplished, thoughtful, witty, loving.

Still, when you get cancer, you’re awfully aware of your mortality and you don’t take being alive for granted.

But you want to. The way you did when you thought other people got cancer, not you.

NCRCC Site Covers Politics and Breast Cancer

The National Breast Cancer Coalition's Web site is worth a look because of its coverage of breast cancer issues related to the presidential campaign. The non-partisan advocacy group was formed in 1991 to lobby "at the national, state and local levels for public policies that impact breast cancer research, diagnosis and treatment. Our grassroots advocacy effort has hundreds of member organizations and tens of thousands of individual members working toward increased federal funding for breast cancer research and collaborating with the scientific community to implement new models of research, improve access to high-quality health care and breast cancer clinical trials for all women, and expand the influence of breast cancer advocates in all aspects of the breast cancer decisionmaking process."

The organization's blog has some informative posts.  One compares Obama and McCain's health care plans and is worth poking into.  Obama's plan has been criticized as being more expensive, but that's because it covers more Americans, even those with existing conditions, such as cancer. As I have noted before, McCain does not cover those with existing conditions.  The site links to an excellent  Wall Street Journal article explaining the impact of the two candidates'  plans. One difference the newspaper notes:  Obama's plan would increase regulation.  McCain's would decrease it.  Interesting.

I have placed the group's pledge on the left column of my site.   Vote to let the candidates know that quality health care is a priority.   By signing, you also pledge to take the candidates' health care positions into consideration when voting.

While the economy is getting the attention this week, as well it should, health care cannot be ignored.   The financial health of the country, yes, is of prime importance.  The physical health, however, is equally important.

Risk of Late Recurrence Lower for Hormone Negative

Here’s a good news/better new flash: women with early stage breast cancer remain at low risk of recurrence years after treatment. That’s good. Better is that women with hormone negative cancers face a much smaller risk of later recurrence than those with hormone positive. This, despite the fact that hormone negative is considered to be more lethal than positive.

The study, by researchers at the University of Texas M.D. Anderson Cancer Center, included 2,838 women with stage I, II, or III breast cancer between 1985 and 2001. Five years after beginning therapy—chemotherapy, radiation, tamoxifen or all three—those with hormone negative disease faced a seven percent chance of recurrence, while those with hormone positive had a 13 percent chance.

The really good news: 89 percent of all patients had no recurrences within 10 years; 80 percent had no recurrences after 15 years. Within five years, those with stage I cancer had a 7 percent risk of recurrence; stage II faced an 11 percent risk; and stage III faced a 13 percent risk.

The research was published online in the Journal of the National Cancer Institute on August 11, 2008. Because HER2 was not routinely measured at the time and Herceptin and aromotase inhibitors had not been introduced, they were not included in the data. Until 2000, tamoxifen was the only drug for follow-up breast cancer care, and it was limited to women with hormone positive disease.

Researchers say that, while the numbers are small, the fact that cancer can recur years after therapy points to a need for more follow-up care. An interesting conundrum, considering the fact that women with hormone negative cancer faced a lower rate of late recurrence than women with hormone positive disease. That is, women for whom there never has been a long-term drug treatment option did better than women with the drug.

The study does point to continued need for regular follow-up exams and mammograms. I would also emphasize the importance of focusing on a low-fat, healthy diet with plenty of exercise, which have been proven to lower the risk of recurrence of hormone negative breast cancer.

Younger Women With Hormone Negative Benefit from Removing Second Breast

Having both breasts removed improves survival rates for young women with early stage hormone-negative breast cancer, according to a study presented at the 2008 Breast Cancer Symposium in Washington DC. And the reduction was significant—a 31 percent drop in mortality rates. Researchers at the University of Texas M.D. Anderson Cancer Center in Houston studied records of more than 80,000 breast cancer patients diagnosed from January 1998 through December 2003.

Women 18-49 with stage I-II breast cancer benefited from contralateral prophylactic mastectomy—or removing both the affected breast and the opposite—or contralateral—one. Older patients, those with stage III disease, or with hormone-receptor-positive breast cancer, saw no significant survival benefits from contralateral prophylactic mastectomy.

Presidential Politics and Health Care: Pay Attention

With presidential politics mired in lipstick on varied animals, it’s time to force a break from the silliness and look at how the candidates handle issues of actual importance, such as health care. Eerily enough, in her criticism of John McCain’s health care plans last April, Elizabeth Edwards called his proposals “painting lipstick on a pig.” (Perhaps it is time to put that phrase to rest, and leave the poor pigs to their mud.)

Edwards’ major complaint, cosmetics aside, is that McCain’s plan would not apply to either her or McCain—or me. It does not include any provisions to keep insurance companies from denying coverage for preexisting conditions. Elizabeth, John and I are all fine, with affordable health insurance and the resources to pay for care. Well, the other two have quite a few more resources than I do, but I still can afford the health care I need, which makes me fortunate indeed. Had I been diagnosed with breast cancer and not had insurance, though, I would have been in a truly scary place, at risk physically and financially. That happens to far too many Americans with serious illness and it is just plain wrong.

Paul Krugman, in the New York Times, agrees, and wrote at the time of Edward’s comments, “It's about time someone said that and, more generally, made the case that Mr. McCain's approach to health care is based on voodoo economics -- not the supply-side voodoo that claims that cutting taxes increases revenues (though Mr. McCain says that, too), but the equally foolish claim, refuted by all available evidence, that the magic of the marketplace can produce cheap health care for everyone.”

The McCain Web site says:  John McCain will reform health care making it easier for individuals and families to obtain insurance. An important part of his plan is to use competition to improve the quality of health insurance with greater variety to match people's needs, lower prices, and portability. Families should be able to purchase health insurance nationwide, across state lines.

Sounds good until you realize that there currently is plenty of competition in the insurance market and we still have 45.8 million uninsured American citizens —in a country with a population of 305 million.  That means 15 percent of Americans are uninsured. And 21 percent of those are under 17. So more of the same seems a weak argument. Competition in the market has only led to continued increases in insurance and health care costs. What’s more, portability applies only to those people whose employers offer them insurance in the first place, which happens less and less in this damaged economy.

Barack Obama proposes simply to cover all Americans. In May, he said, “If you already have health insurance, the only thing that will change for you under this plan is the amount of money you will spend on premiums. That will be less. If you are one of the 45 million Americans who don't have health insurance, you will have it after this plan becomes law. No one will be turned away because of a preexisting condition or illness.”

The Obama site defines Obama's Plan to Cover Uninsured Americans: Obama will make available a new national health plan to all Americans, including the self-employed and small businesses, to buy affordable health coverage that is similar to the plan available to members of Congress.

Obama’s plan is similar to one developed in Massachusetts  and instituted in 2006, which mandates coverage. Obama would subsidize costs for those at lower income levels through tax increases on those making more than $250,000.

Chris Hedges of Truthdig says neither candidate has it right, and that only a single-payer national health insurance system makes sense, citing a Harvard Medical School study that says this would save the country $350 billion a year. 

Still, we need to at least take baby steps, and proposing to shut down one of the country’s largest industries just isn’t going to happen overnight. Change will have to come incrementally, and Obama’s plan is a beginning. Canada went to a single-payer system in the 60s, so there is precedent for it happening. We need somebody with the courage and smarts to force that move. Obama’s 18-month focus on change is clearly the way to go, as evidenced by the fact that McCain is now using the same theme.

Whatever your politics, if you have a chance to visit with the candidates or their staffs, hold them accountable to health care change. More of the same is unthinkable. Make the candidates talk specifics on who they would cover and how. And make them stop talking about lipstick.  

PST May Offer Hope for Hormone-Negative

The Windsor Star reports that Canadian and Indian researchers are collaborating on a study to determine the use of the drug pancratistatin (PST) specifically for hormone-negative breast cancers. PST, made from the Hawaiin spider lily, has been shown in studies to kill cancerous cells while sparing healthy ones. If successful, it will be the first drug for hormone-negative cancers.

Take One Off the Bucket List: I Made it Up the Mountain

Here I am at the miners’ cabin at approximately 10,700 feet on the East Spanish Peak in Southern Colorado. The long shot is of our cabin from the mountain—we’re tucked in that green little valley. And the final shot is of my son, Josh, as a stick figure on top of the ridge, making his way down from the peak, about 2,000 feet above us.

We have owned this property for 16 years and I have been looking up at “our” mountain—it is our focal point here—and imagining myself up there. My husband, son, daughter, brother, and nephews have made it up to the “bowl,” an expanse of rock about 75 percent of the way up the peak. I have heard the stories of the beautiful views, the miners’ cabin, the challenge of the climb, and have envied those who have made it. Three years ago, before I was diagnosed with breast cancer, I began a fitness regimen, with one goal being to make it up to the bowl. I have not had a desire to go the entire way up to the peak, as traversing that rock seemed seriously out of my league. Instead of climbing the East Peak at that time, though, I climbed my own mountain of chemotherapy and radiation. So, finally making the hike last week felt like a double victory—over the mountain and over the cancer.

So, there, I did that.

Magnificent Hummingbirds

These fellows are actually called Magnificent Hummingbirds (Eugenes fulgens), as far as I can tell from my bird book. They’re mesmerizing to watch—they zip straight up about thirty feet into the air then dive back down at featherneck speed and stop on a dime. Sometimes they will fly directly into your face and levitate a few inches in front of your nose, then abrupt fly off sideways. They make a little teek sound and they do not seem to play well with others. Usually there is a dominant bird who bosses the others around and pushes them out of the feeder so he can eat. They love sugar---we feed them a cup of the crystal octane to about three cups of water. That gives them the buzz to act like bomber pilots.

This has nothing to do with breast cancer, except to provide perspective and a little beauty. I took the picture on the deck of our Colorado cabin at dusk as a storm was brewing in the background. I could try for some metaphors here:

We should embrace life like these winged creatures and fly freely, focusing just on the present. Bleach. Let’s all chirp “namaste.”

If a hummingbird, which weighs about an ounce and measures four inches long, can fly from Colorado to Mexico for the winter, doesn’t this dwarf the challenges we face? Maybe, maybe not. Personally, I would love to be able to fly. Wouldn’t you? I bet I would be really skinny if I could exercise by flying. Of course, if could fly, others probably could as well and then the skies would be a mess of people in business suits and briefcases buzzing above. Occasionally a woman with sensible heels would lose a shoe and it would pop you on your head. Next metaphor….

Hummingbirds maintain a healthy body mass index through strenuous exercise. OK, this isn’t a metaphor. And, besides, they might have a nice BMI, but look at their tummies.

As storm clouds build, look to one another for sustenance. Or look to a whole lot of sugar.

Nature’s beauty is its own reward. A truism, not a metaphor. But true indeed.

Hormone-Negative Breast Cancer Can Return As Hormone-Positive

Doctors have long assumed that, if a woman’s breast cancer recurred, it would return with the same receptor status. New research presented at the American Society of Clinical Oncology’s 44th Annual Meeting, shows that a fairly high proportion of recurrences—28 percent—had changes in receptor status: estrogen, progesterone, or HER2.

Interestingly, doctors said that most women do not get additional biopsies for relapsed or metastatic breast cancer. This new information, though, suggests that all new cancers should be biopsied, as changes in receptor status can mean significantly different treatment. For example, if you had been estrogen and progesterone negative, doctors would not treat you with hormone therapy such as tamoxifen. If cancer returns as positive for either estrogen or progesterone, such therapy could be beneficial. Likewise, if you were originally estrogen and progesterone positive and your cancer returned as negative, hormone therapy would not help.

The research was done on tissue samples of women in British Columnia who had relapses between 1986 and 1992.

Forty-five of the original 160 samples showed some type of change. Of these, 11 were local recurrences—at the site of the original tumor—and 34 were regional or distant relapses—in other parts of the body. Of the 34 regional or distant relapses:

11 changed from ER/PR positive to ER/PR negative
14 changed from ER/PR negative to ER/PR positive
3 changed from HER2 negative to HER2 positive
6 changed from HER2 positive to HER2 negative.

Chemobrain

I had an article in the January/February issue of Mamm on chemobrain. I enjoyed writing it and learned a great deal--mainly, that chemo does not cause chemobrain, so it is more aptly called cancer brain.  Researchers are learning fascinating stuff about genes, our brains, and cancer.  

 

Traditional Chemo Better Than New Drug for Hormone Negative

Patients taking a new cancer drug for operable hormone-negative breast cancer faced a far higher risk of death or recurrence than those on standard chemotherapy drugs, according to research presented at the 2008 annual meeting of the American Society of Clinical Oncology. Xeloda (capecitabine) was found to be far less effective than the traditional regimen of AC (doxorubicin/cyclophosphamide) or CMF (cyclophosphamide/methotrexate/fluorouracil) in a test of women aged 65 and older. Xeloda is an oral drug, so it has a bit more appeal than AC and CMF, which are administered intraveneously.

Thirty-four percent of the patients in the study were hormone receptor-negative. Those on Xeloda faced a five to six times greater risk of recurrence and death than those on standard chemo.  Among all participants, the risk was two times higher, so the effects of the drug were especially reduced among women with hormone-negative breast cancer. This is consistent with previous research that has shown a greater benefit from chemo for hormone-negative patients than for hormone-positive.

Patients were studied for two years. Enrollment in the study was stopped after the first 633 patients because the results showed reduced benefit from Xeloda.

Understanding Your Pathology Report: A Short Primer

Your pathology report will include information your doctor will use to determine your treatment and to gauge your prognosis. If you had a biopsy before surgery, you will probably have two different reports—one from the biopsy and one from surgery. Make sure you get a copy of all your reports as they will help you understand your doctor’s recommendations. Lalit vora, MD, director of breast MRI at the City of Hope, even suggests women talk to the radiologist who did the original screening. “The radiologist should be part of your team,” he says. This can be easier said than done, however, as many radiologists prefer to work through the doctor, to reduce the risk of misunderstanding.

Your pathology test has seven sections: specimen, clinical history, clinical diagnosis, gross description, microscopic description, special tests or markers, and summary or final diagnosis.

SPECIMEN: Where the test was taken, such as left or right breast or lymph nodes. A biopsy report will not have data on lymph nodes.

CLINICAL HISTORY: A cryptic statement about your history related to this and any previous cancers. On a biopsy report, this will explain why the test was done, with a notation such a “density” or “palpable lump.” On a surgical report, it will refer to why the surgery was done, often with a simple reference to “left breast cancer.” It may also explain your surgery—“mastectomy” or “partial mastectomy,” for example.

CLINICAL DIAGNOSIS: Your specific type of cancer, such as infiltrating ductal carcinoma (a cancer that has broken through the wall of the milk duct) or ductal carcinoma in situ (the cancer remains contained in the duct).

GROSS DESCRIPTION: The size of the tumor and, for a surgical report, the size and status of the surgical margins and lymph node involvement. This includes:

•Tumor size: Tumors are measured by centimeters (cm). One cm is .394 of an inch. The smaller the better, with under 2 cm usually considered “early stage beast cancer.” 

• Lymph node involvement: The number of lymph nodes tested, and those that tested positive for cancer. A positive lymph node is one to which cancer has spread. A negative node means cancer has not spread.

• Surgical margins: This measures the amount of tissue the surgeon removed around the tumor. Ideally, this should be between 1cm and 10 cm. Clear margins mean that the cancer has not spread to the surrounding tissue.

Microscopic Description: How the cells looked under the microscope. This is most likely where you receptor status is indicated.

• Receptor status: Pathologists measure this using a system that stains the tumor after a biopsy. Different labs present results differently. Some will quantify the result; others will simply note that the cancer is positive or negative. Quantification is ideal, because the more hormones present in the cell, the less aggressive the cancer and the more likely it is to react to hormone treatment.

Some labs use a 3-point system, with a score a “0” meaning none of the cells in the biopsy sample contained receptors, and a “3” meaning most cells contained receptors. A “2” is usually considered weakly positive. Other labs may simply indicate a percentage, with 0 percent meaning no hormones were present and 100 percent meaning all cells in the sample had receptors. In this case, anything under 50 percent is usually weakly positive.

SPECIAL TESTS OF MARKERS: Two common means of assessing how rapidly the tumor is likely to grow are the Bloom-Richardson Scale and the Nottingham Histologic Score. Both readings will likely be high with HR- cancer.

• A Bloom-Richardson high grade means a fast-growing tumor; Low grade means slow-growing. The pathologist might also use the term “poorly-differentiated,” which is another way of saying aggressive.

• The Nottingham Histologic Score rates the tumor numerically based on its “mitotic” count, or how rapidly it appears to be dividing and growing. A Grade I tumor has between 1-5 points and is slow-growing. A Grade II has between 6 and 7 points and is growing at a medium pace. A Grade III is over 8 points and is rapidly growing.

SUMMARY OR FINAL DIAGNOSIS: An overview of the important aspects of your tumor.

WHAT THIS ALL MEANS: The best prognosis comes with smaller tumors that have not spread, with a low Bloom-Richardson rating or Nottingham Histologic Score. Even small HR- tumors, though, are considered aggressive.

Read more about testing and treatment for TNBC in my book, Surviving Triple-Negative Breast Cancer.

Please consider a donation to Positives About Negative to keep this site going.  This work is entirely supported by readers.  Just click on the Donate button in the right of the page.  Thank you!

Footsteps on The Appalachian Trail

I should have added “Hike the Appalachian Trail” to my bucket list. I don’t expect to do much of the trail, certainly not the whole thing, but I would like to at least spend a day or two on it.

I got a start this month in Falls Village Connecticut. OK, we only walked it for an hour—we had a plane to catch—but I at least set foot on the same ground that others have passed since the trail was completed in 1937. The first part of our trek was not all that scenic—we walked along Connecticut Highway 7, over the Housatonic River, down Warren Turnpike, past the Housatonic Valley Regional High School and then, finally, into the woods.

Maybe next spring we’ll go to Georgia, where the trail begins. Then, some other time, we may go to Maine, where it ends. Then we can say we went on the trail from beginning to end.

My Life In Cemeteries: Memorial Day Musings

As a kid, I spent part of every Sunday at Roselawn Cemetery in Pueblo, Colorado. We would “visit” my Prijatel and Okicich grandparents, put fresh flowers on their graves, and then wander to see my parents’ various relatives and friends. It was an oddly rewarding experience. I enjoyed hearing my Mom and Dad reminisce about their pasts and I loved the serenity of the place. Water sprinklers often chattered in the background, keeping the lawn lush and the lilac trees and snowball bushes healthy and fragrant.

My Mom taught me to walk around the graves, making sure I did not walk on top of anybody, being especially careful to avoid humps in the lawn. Occasionally, we would go to the pauper’s cemetery, where there was no lawn, the gravestones were ancient and poorly maintained, and tumbleweeds were the flowers of choice. My mother had an aunt buried there in the early 1900s, and I felt like I was walking into the Wild West when we wandered through those graves, walking gingerly to make sure we didn’t step on any humps that could be rattlesnakes.

We listened to the Slovene Hour as we drove to Roselawn, and sometimes Dad left the radio running so we could hear a favorite waltz or polka. Pueblo, Colorado, my hometown, had a healthy Slovenian population, brought there to work at the steel mill, the Colorado Fuel and Iron Corporation. My name, Prijatel, means friend in Slovene. The names on the gravestones were Slovene, Croatian, Serbian. My Dad used a racial epithet for the Serbs—a word I do not remember and am fine forgetting—inheriting a hostility toward an entire country from his parents who were Slovene immigrants. The Balkans have a long history of conflict—far longer than the recent wars between Serbia, Croatia and Bosnia in the early 1990s. That conflict lived on in the cemetery, at least in my Dad’s mind.

A few years before Dad died, I recorded a walk around the cemetery with him. I wanted a record of his memories about the people. He talked about his parents, both of whom died before I was born, and about the men he worked with at the steel mill. Dad made nails, which was a great metaphor for him—he was a strong as nails and about as sharp, in both a good and bad way. He was smart and he was acidic. As we walked over the manicured lawns in early spring, with lilacs blooming and graves festooned with irises, Dad talked in his mix of censure and compliment. “Oh, look, here’s old Frank. The old [another racial epithet, this time for Italians], I always liked him. He worked hard but he didn’t take any guff from anybody.” Farther along: “Yeah, here’s Jorge. The [another racial epithet, this time for Hispanics]. Smart, really smart. He made the rail spikes and, boy, he could fix that machine in no time flat.”

Fortunately, I did not inherit Dad’s racial perspective , but I did get the love of cemeteries. When my husband and I visited Vienna, our first stop was Zentralfriedhof, the Central Cemetery, where Beethoven, Brahms, Schubert, and Johann Strauss the elder and the younger are buried. In tiny Wrangall, Alaska, we saw one of our most intriguing cemeteries, in which graves were smothered with the special symbols of the person who had died—one was done in a nautical theme, covered with a boat wheel, nets, and a photo of the deceased in his craft.

We visited the beauty in the picture above, the Old Dutch Church and cemetery in Claverack, New York, earlier this month and it made me wonder why I love to visit cemeteries. Part of it is historical interest, to continue a link with the past, to see when people died, how long they lived, and to wonder about their lives. Partly it is because of the art involved. Gravestones can be magnificent granite monuments; outlandishly ornate mélanges of angels, crosses, and hands raised in prayer; sweetly simple rocks with loving text, or roughly rustic homemade jobs with jagged, barely visible scrapes chiseled in wood.

Everywhere, though, they are a reminder that, even though these people are gone, they left behind people who loved them and who continue to remember them. I visit the Pueblo cemetery once a year or so—my parents are now there—and I like to chat with them a bit and to spend some time with the grandparents I never knew but whom I will not forget.

Americans make their cemetery pilgramages on Memorial Day, but in Slovenia, the big celebration is on November 1—All Saints Day. For at least a block before the cemetery entrance, kiosks are set up to sell everything from the obvious to the absurd. Lots of flowers, of course, are a natural. But cotton candy? And ice cream? Our visit there was like going to a carnival. The graves were covered in flowers—fresh bouquets, plants, a mix of both—and the cemetery was packed with people, as though it were some sort of fair.

It is ironic, then, that when we tried to find my great-grandparents’ graves in Slovenia, we were told that the cemetery had moved and they were not moved with it. In Slovenia, many graves are leased, not purchased outright, so when people die or leave the country and stop paying rent, the graves they left behind revert to the church or the city.

That’s what happened to my Slovene grandparents—they moved to America and the graves of their parents simply disappeared in an abandoned churchyard. Still, my parents continued the Slovene tradition of respecting and remembering the dead and passed it on to their kids and grandkids. And so we honor other grandparents, in other graves, in other cemeteries around the world.

My Second Anniversary

I have passed the two-year mark since diagnosis.   The chances of cancer recurring decrease significantly over time, which makes every milestone important.   Hormone-negative breast cancer is most likely to recur within the first three years, so being cancer-free and healthy so far is great news, and I plan to continue in this vein.   Time to celebrate! The big party, though, will be in five years. Perhaps on Machu Picchu.

Exercise benefits younger women

Physically active premenopausal women significantly reduce their risk of breast cancer, according to research in the May 13 edition of the Journal of the National Cancer Institute. Many studies have shown an exercise benefit to postmenopausal women, but this new research shows that younger women also reduce their cancer risk. The research is part of the long-range Nurses Health Study and included 64,777 premenopausal women. Some details:

• The greatest risk reduction came from exercise between 12 and 22, with those 23 to 34 showing a slightly reduced benefit. Women over 35, in this study, gained no risk reduction, which contradicts other studies that show a benefit to lifelong exercise.

• Running 3.25 hours a week or walking 13 hours a week brings a 23 percent risk reduction.

NOTE: Hormone-negative breast cancer is most common among premenopausal women.

Exercise—the best medicine for hormone-negative

Physical activity, including moderate walks and cycling, reduces the risk of breast cancer, with the greatest benefit among women who are hormone-negative, according to a literature review of 62 studies on the effect of exercise on breast cancer risk. Other women whose gains are especially significant: non-whites, those with a family history of breast cancer, and those who have given birth to two or more children benefit the most from exercise.

The review, published in the May 13 edition of the British Journal of Sports Medicine, found that:

• In 76 percent of the studies, physically active women had a lower breast cancer risk; risk reduction was significant in 30 of the 62 studies.

• Among the studies that showed an effect, breast cancer risk was reduced by an average of 25 percent.

• Moderate activity such as walking or leisure cycling brought better odd—a 26 percent reduction—than high intensity exercise—a 22 percent reduction.

• Lifetime activity showed the greatest benefit—greater than that from activity around the time of diagnosis.

• Active postmenopausal women benefit the most. Activity over age 50 showed a greater risk reduction that activity in adolescence and early childhood.

• Thin is best, but only when associated with exercise. Women with a BMI of less than 22 had 19 percent greater risk reduction than women with a BMI above 25. (See the link on the left to compute your BMI.)

• A high BMI cuts the effect. Women with a BMI over 30, even if they are active, had no risk reduction from exercise.

Please consider a donation to Positives About Negative to keep this site going.  This work is entirely supported by readers.  Just click on the Donate button in the right of the page.  Thank you!

Read more about TNBC in my book, Surviving Triple-Negative Breast Cancer.

Carbohydrates increase hormone-negative breast cancer risk

A diet heavy in simple carbohydrates—sugar, white bread, cakes and cookies—can put a woman at risk of hormone-receptor-negative breast cancer, according to research in the American Journal of Nutrition’s May 2008 issue. French researchers studied the diets of 62,739 postmenopausal women from 1993 to 2002; 1812 of these women eventually were diagnosed with breast cancer. The researchers note that, because simple carbs are rapidly absorbed by the body, they elevate insulin levels, which can be the link to hormone-receptor-negative breast cancer. According the Centers for Disease Control, complex carbohydrates—whole grains, seeds, vegetables and most fruits—are more slowly digested and less likely to increase insulin levels.

Need a Last-Minute Mother's Day Gift? Support Cancer Information

Breastcancer.org's gift shop offers organic bouquets, Lenox vases and other goodies, with 10 percent going to the group's activities.  Or just give a donation in Mom's name.  Breastcancer.com offers comprehensive, accurate, and up-to-date  information on breast cancer.  It is an excellent site.

Finding the right genes

I am fascinated by the Human Genome Project, a wide-ranging, long-term study of DNA—and its implications on finding, treating, and avoiding diseases. Doctors say our cancer is as unique as our DNA, so I would really love to try to delve into the “why” and the “how” of my illness. I have a grandmother who died of stomach cancer—although I have long wondered if that was a euphemism for some "woman's problem" like uterine cancer. My mother died of liver cancer that started in her pancreas. My dad had a form of leukemia—often called pre-leukemia, although he died of pneumonia.

In the future, doctors speculate they will be able to customize cancer treatments based on genetic information. And drugs can be developed for specific genes. So, theoretically, our genes could be used to treat illnesses, rather than just cause them.

Still, even though I have a genetic predisposition toward cancer, other lifestyle factors such as diet and exercise are essential. Did the weight I gained in my 50s make me more susceptible?

As I said, this is a compelling medical mystery. It might be my next big project.

Report on Healthy Ways to Prevent Cancer

Food, Nutrition, Physical Activity, and the Prevention of Cancer: a Global Perspective, a comprehensive report on a five-year study of the relationship between diet and exercise and cancer risk, is must reading.

A product of the American Institute for Cancer Research and the World Cancer Research Foundation in the United Kingdom, it's an excellent overview of research, with recommendations for preventing cancer through lifestyle improvements.

Hormone-Negative Rates Drop; Benefits of Vitamin D

The American Association of Cancer Research met earlier this month in San Diego. Several studies dealt with hormone-negative breast cancer. I highlight a couple of them below.

Estrogen-negative cases drop slightly for most women
Cases of estrogen-receptor-negative breast cancer dropped slightly for white and Hispanic women between 2002 and 2004, but rose for African-Americans, according to researchers from the University of Chicago Medical Center.

Estrogen-negative disease disproportionately affects black women, with 40 percent of their tumors likely to be estrogen-negative compared to 20 percent for white or Hispanic women. And while blacks are less likely to get cancer in the first place, they are more likely to be diagnosed with advanced and more lethal forms, such as triple negative (ER-, PR- and HR2-).

Estrogen-receptor-positive breast cancers also dipped, notably among women 50 to 69, with a 13% drop for whites, 11% for Hispanics, 4% for Asian or Pacific Islanders, but no change for African-Americans. This was tied to a reduction in the use of hormone replacement therapy, which affects estrogen-positive cases because they are fueled by hormones.

The reduction in hormone-negative does not have the logical link to HRT and researchers did not explain the drop in those cases. They speculate that black women may have less access to regular mammograms, which accounts for their tumors being at an advanced stage at diagnosis.

Environmental and social factors may also influence cancer, with women in Nigeria having estrogen-receptor positive tumors 70 percent of the time—a 43 percent increase over African-Americans.


Vitamin D Slows Breast Cancer in Rats
A specific form of active vitamin D known as Gemini 0097 substantially reduced the development of both estrogen-negative and estrogen-positive breast cancer in rats. Researchers at Rutgers University injected rats with breast cancers then treated them with Gemini 0097. The vitamin D slowed the growth of ER-positive by 60 percent and ER-negative by 50 percent.

As with all studies in animals, more research needs to be done to determine the effects of Gemini 0097 on human cancers. One benefit so far is that Gemini 0097 is less toxic than other forms of synthetic vitamin D and does not lead to an overload of calcium, the most common side-effect.

Cancer Survivors More Obese Than Most

Breast cancer survivors are among the least physically active cancer survivors, which turns out to be a pretty sedentary group. In a study published in the June 1 issue of Cancer, the journal of the American Cancer Society, Canadian researchers discovered that cancer survivors, for the most part, have a surprisingly unhealthy lifestyle. Among the least active are colorectal, breast, and female melanoma survivors. The most active: male skin survivors

Twenty-one percent of the 114,000 Canadians who were interviewed for the study were physically active; 18 percent were obese. By comparison, 25 percent of Canadians are physically active and 15 percent are obese.

Breast cancer survivors were only about half as likely to be physically active as women who had not had cancer. This despite the fact that both diet and exercise are linked to a reduced risk of cancer and its recurrence.

Why do patients not adopt the healthy habits that can ? There are several possibilities.

• They don’t know about the research.
• Their treatment left them exhausted, depressed, or both, neither of which is conducive to starting a diet or exercise regimen.

If they don’t know that obesity and a sedentary lifestyle are dangerous, why not? Are doctors not focusing on the whole patient, looking only at the cancer and not the rest of the body? That was the case with my docs—nary a one told me to eat well and exercise. Perhaps they knew I was already a health nut? Perhaps they didn’t know the research themselves? Perhaps they only have time to do so much? Whatever the case, it is a sad medical system that keeps doctors from sharing essential health information with their patients.

If the problem is with exhaustion or depression, that’s equally sad, as exercise and diet can help both.

If you know anybody who is recovering from cancer—breast or otherwise—encourage them to get out and walk, to eat their veggies and fruits and reduce their dietary fat. If they have trouble getting started, offer to go walk with them and make it a social event. Bring fresh fruit for a snack.

I was fortunate in that I had made major diet and exercise changes before I was diagnosed, so I just continued my existing plan. But it had been so difficult to get started and keep going— even while I was healthy. I wonder how hard it would have been for me to get going while I was sick.

My Bucket List

I have never really thought about what I want to do before I die. I always apparently thought I would live forever and the future would unfold nicely without my intercession. So, now that I realize I like am indeed mortal, maybe it is time to do some planning. This summer, my husband and I went to Alaska, which would have been high on a list if I had one. Here’s what’s left:

• Climb the mountain by our Colorado cabin, the East Spanish Peak. I was training to do this when I got cancer, and got ever so slightly off track. So, no more excuses. I need to at least try this year.

• Go to Machu Picchu.  The first time I saw pictures of those amazing ruins decades ago, I imagined myself climbing among them.

• Paint more. I used to paint and draw and enjoyed it, but got caught up with other things. In the closet of my home office, I have three small canvasses and a batch of paints all ready to go. Ellen and her husband got me excellent brushes for my 60th birthday. I used them when I was going through treatment and created a truly awful painting. I would like to do one that is not awful.

• Go to Yellowstone. In September when the crowds narrow.

• Spend more time with the people who are important to me—my husband, kids, siblings, nieces and nephews and friends.

• Move someplace with better weather.

• Go to Cinque Terra.  

• Sail Croatia’s Dalmation Coast.  

• Beef up the solar on our cabin.

• Learn CPR.

• Remain in a chorus of some sort.

• Start a compost pile.

• Sew something on my new sewing machine.

That’s it for now. I want to be sort of reasonable.

Alcohol and HRT increase BC risk

It may not just be alcohol that increases the risk of breast cancer—it could be hormone replacement therapy HRT plus alcohol, according to research published in the International Journal of Cancer (March 2008). Women taking oral estrogen who had one or two alcoholic drinks a day increased their breast cancer risk by three times that of women who neither drank nor took HRT. Those who took HRT and had more than two drinks a day increased their risk to five times that of those who ingested neither HRT nor alcohol.

Researchers followed 5,000 Danish women for 20 years and surveyed them on their HRT and alcohol use. Over the two decades of the study, 267 developed breast cancer.

Alcohol and HRT both increase estrogen levels. Together, they are deadly. And, while estrogen does not fuel hormone-receptor-negative cancer, it can be a factor in the earliest formation of the disease.

And the fabulous news for folks like me who miss their martinis—drinking without HRT did not increase the breast cancer risk. I am not ready to hit the bottle in celebration, because this is just one study, but I am encouraged.

So the best approach is to limit both alcohol (fewer than four drinks a week) and the length of time you are on HRT. If you need HRT to improve your quality of life, try alternative forms—I’ve mentioned this in previous posts, but here’s a reminder of what the National Cancer Institute recommends:
• regular exercise
• a diet rich in fruits and vegetables and low in fat
• limited alcohol
• no smoking
• flaxseed, whole grain cereal, and legumes

Vitamin D supplements and calcium can limit loss of bone mass.

How my life has changed!

Instead of helping students understand magazines and build their careers in journalism, I now am reading things titled, "Disaccharide structure code for the easy representation of constituent oligosaccharides from glycosaminoglycans."   In case you were wondering, this is an article on "shorthand nomenclature for designating the disaccharide subunit structure of all glycosaminoglycans."

Hormone Replacement Therapy Can Increase Risk of Recurrence

Hormone replacement therapy (HRT) continues to look like a bad idea.  Research in the past has linked HRT with the incidence of breast cancer.  A new study by European scientists implicates HRT in the recurrence of cancer—for hormone-receptor-positive and hormone-receptive-negative cancer.

That is, HRT might cause cancer in the first place and can cause it to return in survivors. Even for those with hormone-negative tumors.

Results of the HABITS (Hormonal Replacement after Breast Cancer: Is It Safe?) trial published in the Journal of the National Cancer Institute showed a:

• 17.6 percent risk of a recurrence or a new tumor among women taking HRT
• 7.7 percent risk among women not taking HRT

These data were taken four years after diagnosis.  

As an alternative to hormone replacement, the National Cancer Institute recommends:
• regular exercise
• a diet rich in fruits and vegetables and low in fat
• limited alcohol
• no smoking
• flaxseed, whole grain cereal, and legumes

Vitamin D supplements and calcium can limit the loss of bone mass.

Compartmentalizing My Life

My daughter and son-in-law just celebrated their second wedding anniversary. I was sure it was their third. That might be partly because I am crazy about my son-in-law and I think he has been in the family longer than he has. Part of it, though, might be that I subconsciously want to separate the joy of their wedding from the stress of my cancer.

The two overlapped, but I don’t remember it that way. I remember the one and then the other, but the two don’t blend in my memory. Perhaps because I love to think about the wedding and its celebration, but would rather forget about the stupid cancer.

I did this sort of compartmentalization at the time as well.

When Ellen and Steve got married in March 2006, I did not yet know I had cancer. They were married in Lake Tahoe with just the immediate family there. A beautiful ceremony in the snow by the lake. Two months later, we had a reception for them in Des Moines. It was also beautiful—a room full of friends and family surrounded by flowers at the Botanical Center, a beautiful couple in love, great music, and much fun.

Between the wedding and the reception, I was diagnosed with cancer.

As we were preparing for the reception, my son-in-law’s mother asked me how I was holding up. I looked at her, surprised. I had forgotten the cancer and was focusing on the delightful moment. That is still the way I see it. One beautiful series of events on its own. The cancer as a separate event. No need to blur the two.

Let Me Tell You How I Feel: Writing about Cancer is Therapeutic

I am doing the right thing. Or, I could be clever and say I am doing the write thing. Or that I chose the right rite.  Or I could just get to the point, which is: Writing about your emotions can help improve your physical quality of life after cancer, according to research in the February 2008 issue of the The Oncologist.

Some details:

• 49.1 percent of participants said writing changed the way they thought about their illness;

• 35.2 said writing changed the way they felt about their illness.

Representative quote from a participant: “"I felt a lot calmer and more able to move on after writing about it and being forced to think about it. I loved writing about my experience."

• Those who said writing made them think about their disease differently also reported a better physical quality of life.

• A great majority of the participants wrote that cancer transformed their lives positively, and those writers focused on issues of family, spirituality, work, and the future.

Representative quote from a participant: "Don't get me wrong, cancer isn't a gift, it just showed me what the gifts in my life are."

Interestingly, just writing about the facts did not have any effect.

Diet Coke and Cancer: The Debate

I seldom pine for forbidden tastes, now that I am striving for a healthy lifestyle. Giving up Diet Coke, though, has been a chore. I have succeeded fairly well. I now have it once or twice a week instead of once or twice a day. But I miss it. I crave it in a way I crave nothing else. I now drink caffeine-free, which I delude myself into thinking is healthier. And I try to drink an equal amount of water at the same time, to encourage an early exit of the drink’s toxins.

So when I read that Coke was testing the use of the herb stevia as a sweetener instead of aspartame, I thought my soda dreams had been answered. I have researched to see the progress of that plan, but I found nothing authoritative so far. Plus, even with stevia, there is no way Coke could exist in an honestly healthy universe.

Studies have been somewhat inconsistent in finding a connection between the aspartame in Diet Coke and cancer. One study found that aspartame increased breast cancer, leukemia, and lymphoma in rats. When scientists replicated the study on humans, though, they found no correlation between the sweetener and cancer. Research on cancer can be difficult to track, as one study contradicts another, and some folks do just do outright crazy things. One odd study mapped the increase in the use of aspartame in relation to the growth in cases of cancer and determined that one caused the other. Sort of like saying the Honda Civic caused roads deaths because both saw growth at the same time.

Still, aspartame turns into formaldehyde in the body and that simply cannot be good. Formaldehyde has a checkered past, with links to a variety of cancers, although not breast cancer. Although no direct connection has been determined, the threat is there.

And you know what else is there? My continued craving for this unhealthy stuff.

My Stats and My Story

When my gynecologist found my tumor, she said it was small and probably nothing to worry about. This was on a Friday, and my mammogram was on a Monday. In the middle was Mother’s Day. I did not worry about the lump. I figured I was OK.

But the radiologist thought otherwise. She looked at my mammogram, then did a sonogram. She kept poking and probing, talking about some television show—I cannot remember which one—to keep my mind off what it appeared she was finding. She pulled no punches and told me she was pretty sure the pathology report would come back showing “something abnormal.”

That night, I hit the Internet and found a variety of studies that showed that most breast lumps were not cancerous, so once again I decided I was OK. I wasn’t. This was becoming a lousy pattern.

The radiologist called and told me the bad news, but said my tumor was small, telling me, “Patricia, this is not that bad.” I wonder if she has any idea how often I still think of those reassuring words.

I got little reassurance in the ensuing days, but I did get a lot of confusion, starting with the size of my tumor. Breast tumors are measured a variety of ways. First, there’s the size from the sonogram. Mine was 1.5 cm at that point. There’s also the size from the mammogram; mine was 2.1 there. Then there’s the size the pathologist determines after surgery by measuring the tumor itself. Mine was 1.3 X 1.1 cm at that point. This is a big deal, as tumors under 2 cm are considered Stage 1, or early stage.

Then I began meeting with the docs.

At my first meeting with the surgeon, he told me that I had an invasive ductal carcinoma—the cancer had broken through the wall of the milk duct and invaded other tissue. He said I would have a lumpectomy—an elegant lay term for a partial mastectomy—and radiation, unless the cancer had spread. Only if it had spread would I need chemo, he said. At this point I knew nothing about hormone negative cancer, so I asked few questions, and trustingly made plans for the surgery. I somehow knew it had not spread and so I figured I would have the inconvenience of radiation, but that was it.

Wrong again.

The surgeon explained that he would take out only one lymph node—the sentinel node, or the node to which the cancer would move. This is determined by injecting a radioactive tracer consisting of blue dye into my tumor and seeing where it moves. The node to which it heads first is the sentinel node.

He ended up taking out two sentinel nodes, both of which were negative, thank God. The cancer had not spread. He told me this immediately after surgery, while I was still in recovery. Then he quietly dropped a bombshell. He told me he got all the cancer—with a healthy, clear .3cm margin—but that he wanted me to see an oncologist about chemo. “But it has not spread; I don’t need chemo,” I argued. He was adamant. His nurse would set up the appointment.

It was not until my husband and I naively went into the Oncologist Number One’s office a week after surgery that I learned that there was such a thing as hormone-negative cancer and that it is more aggressive than hormone positive. I was estrogen-negative, weakly positive for progesterone and negative for Her2. The oncologist said they treat that weakly positive as negative and that I needed chemo because of the aggressive nature of my tumor.

He said the tumor was poorly differentiated, which meant it could grow rapidly. And he said it was 2.1 centimeters, making it a Stage II rather than a Stage I. He used the size from the mammogram. Had I gone with his interpretation, I would have had four rounds of adriamycin and cytoxen followed by four rounds of taxol, or 16 weeks of chemotherapy.

I had 100 percent chance of losing my hair after two weeks of treatment, he said, but nausea and vomiting are “no longer an issue” because of drugs. He said I would not feel 100 percent normal, but could count on being about 85 percent of my charming self. The taxol, he said, might cause some degeneration of nerves, but it goes away with time. He was so calm and cool and officious, I wish I had asked if he had ever had chemo.

My husband and I left the office in shock. Chemo put an entirely different color on the whole thing. When you lose your hair, you are a cancer patient, with a capital “C.” Without chemo, it is lower-case cancer.

After reeling for a few hours, I decided to get a second opinion, but I was still depending on the advice of doctors; I had not yet done research into hormone-negative cancer. Magically, I ultimately made the right decisions, but I wish I had been better informed from the beginning.

We met with Oncologist Number Two three days later. He looked through the chart and said the tumor was only 1.1 cm—what the pathologist determined after surgery. It wasn’t very big and it had not spread, so it was early stage breast cancer. But it was hormone-negative and therefore very aggressive. “This is a young woman’s cancer,” he said. “We take it very seriously. You don’t get a second chance.” However, because my nodes were negative, he said I would need the adriamycin and cytoxen in a dose-dense regimen every two week, but I would not need the taxol. I would then have radiation.

And he looked at the Nottingham Histologic Score, which was Grade II, meaning it was in the mid-range in terms of aggressiveness. The higher the grade, the more aggressive the tumor: Grade I is slow growing; Grade III is fast growing. I felt a little calmer, knowing I was middle-of-the-road.

I went with Oncologist Two and his regimen, which, I learned through research, is the standard for early-stage node-negative hormone-receptor-negative cancer. So many negatives, and I was trying so hard to be positive.

I had four rounds of chemotherapy—adriamycin and cytoxan—and I did, indeed lose my hair. Three weeks after chemo started, just as Oncologist Two predicted.

But the business about no nausea from Oncologist Number One? Well, we took him seriously, and went out for lunch after the first chemo treatment. I still cannot look at spaghetti with meat sauce without a sense of revulsion. Ick. I learned to eat small, mild meals before chemo and the nausea was better, but I still felt ill the day or two after treatment. I also started visiting an acupuncturist on the day of treatment and that helped the nausea and my well being immensely. I still see her. I think she is magic.

I continued walking for exercise throughout treatment. That, I think, helped the nausea. I worked as much as I could, often at home, and found the frustrations of academic life to be a nice reprieve from cancer treatment. Cancer does put everything into perspective. I had a thoroughly supportive workplace, which was a blessing and, I am sure, helped my recovery.

After chemo, I had 33 days of radiation. Every weekday for six and a half weeks. I loved my radiation oncologist—a truly positive woman—and the technicians, who all had a good attitude and a sense of humor.

I began this adventure May 15 with the mammogram, sonogram and biopsy. I had surgery exactly two weeks later, on May 29. Chemo went from June 16 through July 27. Radiation started August 14 and ended September 29.

On October 7, two weeks after my last radiation treatment, I was hiking in the Colorado Rockies. My longest hike that year was a three-hour trek up to 9,000 feet. As I walked I enjoyed the warm autumn sun, the purple mountains, the orange and gold fall leaves, and I thought of how I loved this part of my world. We walked briskly and I had no trouble keeping up with my husband, brother and nephew, all usually stronger hikers than me. It wasn’t until I reached the top of a canyon and asked my husband to take a picture of me with my still-bald head that I remembered I had just finished cancer treatment. It all seemed like a bad dream. Or perhaps, a good one. I had, in fact, awakened, with energy and sprit and, most important, health.