Woman-to-Woman Guide

Breast Cancer, There and Back
by Jami Bernard

• Chemotherapy
• Radiation
• Wig Shopping
• Remedies for Side Effects
• ...and much, much more!

Foreword by Clifford Hudis, M.D. Chief, Breast Cancer Medicine Service, Memorial Sloan-Kettering Cancer Center

DOCTORS EXPLAIN YOUR CANCER TREATMENTS - JAMI BERNARD TELLS YOU EVERYTHING ELSE!

You or someone you love is facing one of the greatest challenges life can hand you. But Jami Bernard lets you in on a secret: You can do it. A breast cancer veteran herself, Jami shows you how chemotherapy and radiation-as difficult as they are-can simply be roads on your journey to recovery. And she offers tips and insights that are sure to help you on your way.

In this upbeat guide, Jami, film critic for the New York Daily News, looks back on her time in “Cancer World” with a sense of accomplishment and empowerment. Now she's the best girlfriend you could have, one who gives you the down-to-earth advice, hilarious truths, and wonderful emotional support. Discover:

• How to deal with unexpected emotional ups and downs, including manic moods and nonstop worrying

• How to handle losing your hair without losing your self-esteem

• What to eat during chemo, including foods that stop nausea

• How to deal with friends and family who do more harm than good

• How to overcome “needlephobia”-including step-by-step strategies from the author's personal struggle

• Natural ways to conquer insomnia, a common cancer side effect

• Words of wisdom from other cancer survivors.

• ...and much more!

BREAST CANCER, THERE AND BACK

…is irreverent, nitty-gritty, and right on target with facts about meds, therapy sessions, beauty aids, and sex, too. And it can be better than chocolate for lifting your spirits.

“IT WAS A TOUGH YEAR...
But, here's the thing-I remember that year with a great deal of fondness! Weird, but true, and not as uncommon as you'd think....Most of the women I know who have had breast cancer came to regard it as a challenge. We adapted, coped, and learned to fit cancer into our schedules so that it became something we could handle physically, mentally, and practically. In the process, we discovered new and wonderful things about ourselves and others....It was an Outward Bound for the soul.” “Happiness and well-being are not guaranteed side effects of breast cancer treatment. They are things you have to work at, just as you will work on minimizing the more unpleasant side effects of chemo and radiation. This book will help you do both. It is a practical guide that will take you step by step through those scary sounding treatments, the chemo and radiation that often come after surgery for breast cancer. This book is designed to help you avoid or cope with the unpleasant stuff, and also to lift your spirits and help you find strength and wisdom through your experience.”

-from BREAST CANCER, THERE AND BACK

Introduction to Chemotherapy and Radiation

Chemotherapy and/or radiation therapy are two types of treatment commonly given to breast-cancer patients in addition to surgery. The surgery physically removes the tumor, while the chemo and radiation kill off stray cancer cells that may still be lurking in the area or have traveled through the lymphatic system to other parts of the body. If you have picked up this book, then not only are you preparing for chemo and/or radiation treatments, but you are also exhibiting extraordinary literary taste, and for that I congratulate you.

Getting chemo isn't a walk in the park, but on the scale of things that make me nauseous, it still beats a tax audit. There are fabulous new designer drugs available to help you get through chemo (some patients don't ever throw up!), whereas if you are audited, very few drugs will alleviate your pain.

Science is making breakthroughs every day in treating cancer, breast cancer in particular. When caught in the early stages, it is so treatable it's considered curable. Meanwhile, chemo and radiation (in addition to surgery and synthetic hormones such as tamoxifen) are the best weapons in the modern world's breast cancer arsenal.

Yet it all sounds so frightening. Radiation seems scary because if you didn't pay attention back in science class, then you haven't the foggiest idea of how and why it works. Chemo, on the other hand, is not such a mystery. Everyone has an opinion on chemo, and it's usually not a good one. The prospect of going through chemo can be more troublesome to many people than the cancer itself. When the surgeon who performed my lumpectomy told me that I'd need chemo, I blanched and said this was the first I'd heard of it, when in fact we had discussed it a mere two days before. I had blocked the memory of that discussion entirely and was in such denial that I thought my surgeon was pulling a fast one.

A Brief History of Breast Cancer

BE THANKFUL YOU WEREN'T BORN WAY BACK WHEN

Boy, are you lucky, all things considered. It wasn't until the sixteenth century that anatomy became a science, so surgery before that time was largely based on folk wisdom. Be grateful you were not born before the mid-nineteenth century, when anesthetics and antiseptics were first discovered. Until then, a patient was lucky to get a shot of whiskey before being cut open.

If you think chemo sounds bad, at least it's proven to be effective, unlike the treatments of yore. It would not be wise to get breast cancer in France in 1350, where you might be prescribed “an infusion of elderberry roots pickled in vinegar for nine days.” Marilyn Yalom, in her book A History of the Breast, lists just a few of the horrible mixtures smeared on breasts in the name of medicine in ages past, including burned excrement of men, wasps, or bats; cow's brain; crawfish boiled in ass's milk; pork blood, arsenic, lead, and mercury ointments; compresses dipped in urine; rotten apples; and vivisected pigeon parts.

The first surgeon to add axillary dissection to breast surgery (removal of lymph nodes under the arm), even before the lymphatic system was discovered, was the German surgeon Wilhelm Fabry at the turn of the seventeenth century, when it was still thought that breast cancer was caused by breast milk that had curdled and hardened. “For the next 200 years, medicine and quackery, superstition and science, unfounded prejudice and empirical observation coexisted willy-nilly, as they still do, if less flagrantly, in our own time,” writes Yalom. Her descriptions of old-time folk remedies are reminiscent of some of today's superstitions, such as trying to cure cancer with herbal tea or positive thinking.

Chemo, by comparison, has the clear advantage of being effective in a predictable percentage of cases, a percentage clearly higher than would be the case if you did nothing. It was initially used as an adjuvant treatment in the 1960s. You can see why chemo got such a bad rap. Before better antiemetic drugs were discovered to prevent nausea, many patients spent the better part of their time camped out in their bathrooms. The fear of treatment-of the time it takes, the hassle, the laundry list of possible side effects-can feel more devastating than the treatment itself.

I'm a firm believer in the adage knowledge is power. The more you know about why and how these treatments work and what to expect, the better you will be able to cope with them and be a proactive patient who participates in her own recovery. (Only 1 percent of breast-cancer patients are men, so guys, if you're reading this, you'll just have to put up with the feminine pronoun throughout this book.)

I'm not recommending that you go overboard and get a doctoral degree in oncology. I'm just saying that a lot of the fear of cancer treatments has to do with fear of the unknown. So let's demystify the process!

WEIRD FACT

The most famous midwife in Paris during the early 1600s was Madame Louise Bourgeois, who brought Louis XIII into the world. Here is Madame's Rx for breast cancer, according to A History of the Breast: “Take a half-pound of lard and dissolve it, a small amount of new wax, two ounces of pitch [tar], and from all of this make an ointment, with which you will plaster the breast once it has been lanced.”

Chemo 101

For many breast cancer patients, chemo is the next step after surgery. Chemo and radiation are both very intensive and their cumulative impact makes you tired, so doctors typically administer them separately. One advantage of leaving radiation for last is that it gives your breast more time to heal after surgery, but the order in which you receive the two may be a function of the policy of your hospital, or whether your cancer is estrogen-receptor positive. In some cases, chemo is given even before surgery to reduce the size of the tumor.

Chemo is a “systemic” treatment (because it travels throughout your system) that is administered either in pill form or through an IV (intravenous needle). There are different kinds of chemo and different chemo combinations, or “cocktails.” What they basically do is kill off fast-growing cells by interfering with the rogue cells' ability to divide. Cancer cells are fast-growing cells; unlike my own mathematical abilities, they divide and multiply with lightning speed. Eventually, they crowd out the normal cells, preventing the body from performing its necessary functions. Chemo singles out fast-growing cells and says to them, “Can't you read the sign? This is a no-dividing, no-multiplying zone! Move along!”

However, the chemo cannot differentiate between the “bad” fast-growing cells and the “good” fast-growing cells, which happen to be the ones in the digestive tract, the reproductive organs, the bone marrow (where new blood cells are manufactured), and the hair follicles. This explains some of chemo's famous side effects, like runny nose, upset stomach, low blood counts, and hair loss. The amount or type of side effects you get are not an indication of how and whether the chemo is working, but of how your body happens to respond under the circumstances.

Chemo is administered (generally on an out-patient basis) in “cycles,” meaning that the body gets to recover a bit (usually three or four weeks) before the next infusion. Shorter cycles are now possible using new bone marrow stimulants, but these are not considered standard at present. Four doses, then, would typically take about three months.

Like all cells, cancer cells go through growth phases. The exact effect of various chemotherapy agents is not always the same and the mechanisms by which they kill cells is not necessarily known. In general, scientists think chemo attacks cancer cells before they are able to divide. Since different cells are at different growth phases at different times, the chemo kills off cancer cells in waves, then hits others during the next round of treatments, etc. The first blast of chemo wipes out as many cancer cells as possible. After that, the chemo continues to “stalk malignant cells,” as one book describes the process, which brings to mind chemo molecules in hunting caps and red-plaid jackets. In fact, scientists believe that the same proportion of cells are killed with each dose. However, this presents a problem similar to the man who halves the distance home with each step-he never actually gets there!

In addition, cells may grow back after each treatment. The hope is that enough cycles of effective treatment will kill enough cancer cells to allow other bodily defenses to limit growth of cancer cells.

In addition to being “systemic,” chemo is also called an “adjuvant” treatment for breast cancer because it is administered in addition to surgery. (Radiation, however, is considered a “primary” treatment, and is almost always given to women who have had lumpectomies, and occasionally to women who have had mastectomies.)

The key motivation for the use of chemotherapy (and hormone therapy, too) is that, unlike surgery and radiation treatments which are aimed at identified sites of cancer, chemo is unaimed and can attack cancer wherever it might be lurking in the body.

Years ago, it was assumed that if few or no lymph nodes were involved (diagnosed “positive”), then the cancer hadn't spread to any other parts of the body. The lymph nodes were considered the tollbooths on the cancer highway, and if they hadn't seen any traffic yet, it was assumed you were relatively safe.

Later it was found that cancer cells could break away at any time and wander past your internal “no trespassing” signs, even when a tumor was in its early stages. These stray cancer cells, while invisible to imaging methods like X rays, could set up shop elsewhere, most notably in the liver or bones, thus metastasizing (or spreading) the original cancer to other parts of the body. When this happens, the far-flung cancer is still known as “breast cancer,” no matter where in the body it shows up.

Because of these discoveries, today's breast cancer patients very often get chemo if only as an insurance policy, just in case a cell or two escaped and is on the lam.

Chemo Cocktails: Recipe for Health

There are dozens of chemotherapy drugs available to fight cancer. Here is a list of the most common chemo “cocktails,” or combinations, given to breast cancer patients. Granted, they are not as appealing as such cocktails as the chocolate martini.

CMF: Cyclophosphamide (marketed as Cytoxan), methotrexate, 5-fluorouracil (5-FU)

CAF: Cyclophosphamide, doxorubicin (Adriamycin), 5-fluorouracil

CEF: Cyclophosphamide, epirubicin, 5-fluorouracil

CMFVP: Cyclophosphamide, methotrexate, 5-fluorouracil, vincristine, prednisone

AC: Doxorubicin, cyclophosphamide

VAT: Vinblastine, doxorubicin, thiotepa

VATH: Vinblastine, doxorubicin, thiotepa, fluoxymesterone

CDDP + VP-16: Cisplatin, etoposide, mitomycin C plus vinblastine

AC + T: Doxorubicin and cyclophosphamide followed by paclitaxel

AC + Txt: Doxorubicin and cyclophosphamide followed by docetaxel

Chemo is often administered in cocktails because it has been found that these combinations are far more effective than using any of the agents singly. However, even that conclusion is currently under very careful study. As noted in the doctors' reference book Principles of Cancer Management: Chemotherapy, “Although such selection leads to a wider range of side effects, it minimizes the risk of a lethal effect caused by multiple insults to the same organ system by different drugs and allows dose intensity to be maximized.”

My own chemo regimen involved three months of Adriamycin and six months of CMF, the latter of which I dubbed “chemo lite” because it allowed my hair to grow back.

“Adria” was the chemo I liked least. The name sounded so pretty and it came in a cheerful orange color, but it is quite potent and needs to be administered with plenty of IV fluids so that it doesn't sclerose (scar) the vein. It's also part of the chemo family that, at typical doses, is guaranteed to make you lose your hair-other types may just thin it. Your doctor will custom tailor your chemo regimen based on a number of factors. Some of these factors have to do with your original tumor, such as how large it was or whether any lymph nodes under the arm were involved. The type and amount of chemo you get is also dependent on your age and general health. The oncologist will factor in risk versus reward when designing the length and aggressiveness of your treatment. If you've lived a long, full life, you may not want to spend a precious six months undergoing chemo.

How much chemo you can tolerate is initially formulated according to the measurement of your body surface and later refined as treatments progress. Your doctor will know how well it's working not by how many side effects you get, but by the measurable evidence in your blood counts.

Questions to ask your Oncologist

• How many patients have you treated with similar cases?

• Why do I need this treatment?

• How long will this treatment take?

• What is my prognosis? (This is a tricky question, because the oncologist needs to be frank without unduly alarming you. Still, you have a right to know what he thinks about your particular case, and how other women fared with similar treatments. Just keep in mind that an answer to this question is only an estimate based on comparison with huge swaths of the population.)

• What are my options regarding chemo, and do I have other options besides chemo?

• Why are you recommending this particular chemo regimen? (Most chemo regimens are standard, the difference being in the amount an individual receives. But the doctor may have a philosophy about treatment that you'll be interested to hear.)

• What are the possible side effects, and when do they show up?

• Who do I call to help me manage the side effects? The oncologist? A nurse? A resident on duty at the hospital if it's after 5 p.m.? If so, is there a separate phone number?

• What are the side effects that are considered serious enough for hospitalization?

• Are there any longer-term side effects I need to be aware of?

• When can I go back to work or resume normal activities?

• Will I also be given hormonal treatments, like tamoxifen, and if so, what additional side effects can I expect?

• Will I cease to menstruate during chemo? If so, will it begin again? When?

• Will the sum total of these treatments affect my ability to conceive?

• Are there other issues regarding future pregnancy I need to be aware of?

Radiation 101

Radiation is similar to chemo in that it interrupts fast-growing cells and prevents them from getting what they need in order to keep dividing. With external-beam radiation, a stream of high-energy particles or waves is aimed at the affected breast in order to kill off any stray cancer cells that might have escaped the surgeon's scalpel.

Radiation also has its own list of side effects, including a temporary sunburn that makes you look like you wore only half your bikini top at the beach. But you absolutely cannot feel radiation being administered. There is no pain or discomfort. Since it's aimed at the breast and nowhere else, it does not cause the digestive problems commonly associated with radiation for other kinds of cancer.

And, needless to say, you will not glow in the dark or develop X-ray vision. The reality of radiation is not nearly as exciting as your fertile imagination may suggest.

External-beam radiation is like getting an X ray. A machine aims the beams at your breast while you lie on a table. On rare occasions, a doctor may recommend brachytherapy, or internal radiation, in which little pellets of iridium 192 are implanted through plastic tubes right in the breast tissue itself. Picture those TV commercials for time-release allergy medication, and you get the idea. If you do receive brachytherapy, it will be in a hospital setting, and-don't take it personally, it's not your breath-your guests will have to sit six feet away to avoid exposure to that small amount of radiation.

Questions for Your Radiation Oncologist

• How does radiation work?
• Why do I need radiation?
• How much radiation will I receive?
• How long will the treatments take?
• Will I receive a radiation “boost” at the end of treatment?
• What are the possible side effects?
• Are there any long-term risks associated with this treatment?
• Are there any vitamins or supplements I should specifically avoid during treatment? Are there any I should take?
• Who do I call to help me manage the side effects? What if it's after business hours?
• Will I be able to go to work?
• Will these treatments affect my ability to conceive in the future?

Conclusion

Chemo and radiation treatments are time-intensive, but that's a good thing. Believe me, you do not want all those treatments in one sitting.

The treatments are tough on the body, and the body needs time to recuperate between doses. So chemo is usually given in several sittings spaced three weeks or so apart-the interval should be consistent for maximum effect-and radiation is given for a few minutes once a day for about six weeks. Everyone's treatment is different, but I know that mine took just about a year door-to-door, from diagnosis and surgery to the day I hopped off the radiation table and yelled, “So long, suckers!” (Well, I thought about yelling it.)

I could be melodramatic and say it was a year out of my life, but it was not. It was a year added to my life. I went back to work full time after my first chemo treatment and finished writing a book. I socialized, dated, and did just about all the things I usually do. Although my life was taken up with breast cancer, it was a full and rewarding year nonetheless. A difficult year? Yes, but as I often reminded myself, it was only difficult, not impossible.

Finding a Good Fit With Your Doctor

My mother was raised during an era when all doctors were considered gods. You dressed nicely for a visit with them, you didn't pester them, and you kept all those nagging questions to yourself. My mother thinks they're all geniuses, even if they went to off-shore med schools. It's touching, really. I have a different view of doctors. They were the kids I went to school with who chose a different career track, one that was open to anyone with the inclination and grades. These kids were as silly and immature and flawed as any of us, but they chose a career that carried a great deal of responsibility. That probably sobered them up fast.

No matter the field of endeavor, medicine included, there will be a bell curve of the few who excel to greatness, the competent majority, and the strugglers who bring up the rear. I know that if your waiter isn't up to snuff, you won't think twice about trying a different restaurant next time. As a consumer, you have the same right to choose your doctor.

It's not that I don't respect doctors. I also respect a good cabdriver who knows the route and gets me there safely. People who love their work, take it seriously, and pay attention to the nuances are tops in any profession. You can't walk into a doctor's office so cowed by the medical degree on the wall that you forget to ask questions or to demand respect in return.

You'll have a long relationship with your oncologist, because there will be follow-up visits every three months, then every six months, and finally on an annual basis. So it has got to be someone who is not only professional, but also someone with whom you are comfortable.

Getting a second opinion is your right as a patient, and you may want to get one if only to find a doctor you like better personally. One friend of mine even got a third opinion; her first doctor frightened her, the second one seemed distracted, but the third time was a charm. I never went for a second opinion, but that was a conscious choice I made because I was comfortable with the doctor, his staff, the facilities, and the course of treatment. I was already happy with my surgeon, and the two were part of the same medical group.

On the other hand, this is your oncologist, not your new best friend. Liking your doctor does not mean you have to agree on politics, literature, or fashion.

GOOD DOCTORS …

• Are professional without being cold and severe.
• Are knowledgeable and patient.
• Answer all your questions.
• Look you in the eye.
• Make the time for you without constantly checking their watches.
• Treat their nurses and staff with respect.
• Give you a good feeling.
• Don't let you cool your heels in the waiting room too long.

Copyright © 2001 by Jami Bernard

About the Author

JAMI BERNARD is an author, humorist, and award-winning film critic for the New York Daily News. Her movie grades appear regularly in Entertainment Weekly. She is the author of four film books and one book on the breast cancer, which battled (successfully!) in 1996. For more information please visit www.jamibernard.com