Prevention
What happens when you live?
Decoding the New Rules
November 2005
By Judith Hopper
Photographs by Mary Ellen Mark

What does a cancer survivor look like?  Look around: 3 in 4 American families have experienced cancer, or will in the future. Or look in the mirror: You have a 1 in 2 chance of developing some type of cancer in your lifetime. It's a scary statistic - but not nearly as scary as it once was. More and more  people are surviving cancer, and that's why Prevention decided to produce a special report on cancer's new rules. We were prompted not only by the significant jump in survival rates, but for the reasons behind it: radically improved chemotherapies, more precisely targeted radiation, and a dramatic increase in early detection.

Most of the writers, editors, and photographers who contributed to this package are themselves cancer survivors. When  we called Mary Ellen Mark, photojournalist and artist whose work hangs in museums around the world, she not only agreed to shoot the story, but also became a part of the picture. Twice a survivor, Mark beat uterine cancer in 1994 and was diagnosed (early) and treated this year for breast cancer - in fact, she went for radiation treatment the morning of our shoot. "The first time around it was terrifying," she recalls. "I got a real sense of my own mortality." Then and now, she says she attacks the disease in the same way she does a photo assignment, "with lots of questions and research."

Cancer continues to confound our expectations. For all the strides researchers have made, there are questions - let alone cures - that remain stubbornly out of reach. Then there are the surprising breakthroughs and beat-the-odds patients. When a favorite relative was diagnosed with stage 4 lung cancer 3 years ago, my family feared he had only months to live. Instead, after surgery and chemotherapy, he's on the golf course three times a week these days. This month, when we pause to give thanks as a nation, I'm profoundly thankful that cancer is less likely to be a death sentence than a chronic disease to be managed - and lived with.

Rosemary Ellis, Editorial Director

I am lying on a polished steel table, naked but for a thin cotton gown with faded blue sprigs. Stripped of my clothes, my jewelry, my wallet, my photographs of loved ones, I watch masked people in blue gowns circle around, uncoiling tubing, pouring amber-colored liquids into an IV, taking steel instruments out of drawers and cabinets, stuffing my hair into a paper cap. My former life already seems like a dim dream, as if I were remembering someone else's life. I have shrunk to a sentence on a medical form: "41-year-old premenopausal woman with breast cancer." For the rest of my life, I will be a statistic in their tumor registry.

That was 15 years ago. I have survived breast cancer, a poor prognosis, chemotherapy (which induced menopause), radiation, myriad alternative treatments, two recurrences, and a mastectomy.  My life is fairly normal… if you don't look closely.

There are more than 10 million cancer survivors in the United States today, up from a mere 3 million in 1971. With improved chemotherapy, the advent of targeted treatments, and better screening and detection methods, for many, cancer is now less a death threat than it is a chronic condition. But even after leaving the world of wigs and gamma rays and bad biopsies, we don't just live happily ever after.

Oddly, many of us feel safe as long as we're getting hooked up to the IVs full of Kool-Aid-colored chemicals, but the day our treatment ends and our hair starts to grow back, we feel as if we're being tossed to the sharks. Now what? we wonder. What am I supposed to do now?


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THE FACE OF SURVIVORSHIP (clockwise from top left) James E. Williams Jr., retired colonel, prostate cancer; Conor Stuart-Roe, third grader, kidney cancer; Geralyn Lucas, TV director, breast cancer; Heather Rodale, corporate executive, melanoma; Sandra J. Homing, MD, professor of oncology medicine, breast cancer; Mary Ellen Mark, photographer, uterine and breast cancers; Javon A. Graham, fourth grader, testicular cancer; Holly Pevzner. magazine editor, bone cancer

Until recently, experts were still shrugging their shoulders. As the ranks of survivors swelled, the information that could improve our lives lagged behind. For decades, the medical world (understandably) focused its heavy artillery on killing cancer cells and saving lives. Only recently has a new front emerged - survivorship, the rigorous study of what happens when cancer patients live.

CANCERS NEW RULES

There are dozens of unknowns: Which chemotherapy treatments cause secondary cancers 20 years later? Which patients are at greatest risk of developing heart problems as a result of treatment? Does going mano a mano with death make a person a Buddhist sage or a neurotic lifelong hypochondriac? How many cancer survivors reach their career goals? How do people disfigured by surgery handle dating in a world obsessed with beauty and physical perfection? Until recently, the post-treatment life of a survivor was like the blank part of a medieval map labeled Here be dragons. That is about to change.

"One thing we're learning is that cancer affects every domain of life," says Julia H. Rowland, PhD, director of the Office of Cancer Survivorship, which was established in 1996 by the National Cancer Institute in response to growing advocacy by survivors. Problems run the gamut from persistent medical complaints - chronic pain and fatigue, arm swelling, infertility, the fuzzy mind state known as "chemobrain" - to insurance and employment problems, drastically altered love lives, social stigmatization, and depression. (Of course, we could have told them that.)

Of 1,020 cancer survivors polled by the Lance Armstrong Foundation in October 2004, 57% said that although cancer may leave their bodies, it will always be a part of their lives. Seventy percent have struggled with depression; 54%, with chronic pain; and 53%, with secondary health problems. The majority said the practical and emotional consequences of the disease were more painful than the medical issues. Being denied life or health insurance, losing a job or a promotion, and going into debt are not uncommon sequels to a cancer diagnosis. Forty-nine percent of survivors said their nonmedical needs were not being met by the health care system. And, lest we forget, we are the lucky ones.

"We're not blaming oncologists," says Doug Ulman, director of survivorship at the foundation. "Doctors truly want to offer more to their patients, but they need to know what to do. The oncologist may hand you a brochure about your problem, but if you're too depressed or overwhelmed, you might not be able to make the call."

Often the patients want to break off contact. In the first years after my diagnosis, my highest aspiration was to leave behind the survival statistics - "10 years disease free" - and melt back into normal life. I didn't want medical statisticians tracking me, wondering about relatives with cancer or how many drinks I had last week. My goal was all too attainable, I've since learned, as about 95% of adults with cancer simply don't participate in clinical trials. (Parents tend to have better follow-through: 75% of children with cancer do join trials.)

Yet I was hungry for information. There was a time, 2 or 3 years postdiagnosis, when all I read were books about mountain climbing - about mountain climbing disasters, to be precise. (To meet my standards, someone had to fall into a crevasse or nearly perish from hypothermia.) After accumulating an impressive armchair knowledge of the use of carabiners and crampons on icy precipices, I moved on to memoirs by people who had been shipwrecked, lost en route to either pole, marooned on an island, or stranded by airplane crashes. Several years passed before it hit me that there was a connection between these survival stories and my own near brush with death: I wanted to find out what happened to people who had peered into the abyss, what they saw, and how they managed afterward.

"We all live with this sword of Damocles hanging over us, and we want to know what to do to stay well," notes David H. Johnson, MD, a lymphoma survivor who is the outgoing president of the American Society for Clinical Oncology (ASCO).  After completing his treatment for lymphoma in 1989, Johnson recalls, "I asked my colleagues, 'What do you do when you finish treatment?' and they said, 'Well, uh...' There are rehabilitative programs for heart patients. I thought, Where's the cancer rehab program? I had to create my own." Johnson appointed a task force that is developing guidelines to address the physical, emotional, and practical needs of survivors. The group will also revise the organization's oncology training curriculum and support research to improve the care of long‑term survivors.

Johnson, the deputy director of the Vanderbilt‑Ingram Cancer Center in Nashville, was the first cancer survivor to head ASCO. His successor, Sandra J. Homing, MD, is the second ‑ surely, a sign of the times. A few hours after getting her breast cancer diagnosis 9 years ago, Homing, a professor of medicine at Stanford University Medical Center, had to present a federal grant proposal. "Having cancer made me understand the grief of losing your concept of being a healthy person," she says. Wracked with insomnia for the first time in her life, she empathized with her sleep‑challenged patients, and she is still struggling with the occasional subtle cognitive lapses of chemobrain.

"It's not that I can't balance my checkbook," she says, "but I sometimes have trouble finding a word or recalling a name. Oddly, I often know the letter it starts with." The very existence of chemobrain is being questioned by new studies, so it may or may not be meaningful that I share this deficit, including the part about the initial letter. It seemed to start with chemotherapy. But then again, chemotherapy caused instant menopause, and that could explain my mental lapses. All I know is that it persists.

"The long‑term consequences of these drugs weren't studied in the past because they were only used in women with metastatic disease who did not last long enough to find out," says surgeon/author/activist Susan Love, MD. "Now survivors are dealing with questions about premature menopause, osteoporosis, and chemo­brain, as well as the fears of recurrence or second cancers."

Common medical aftereffects in men also include sexual dysfunction, among other genitourinary problems following treatment for prostate, bladder, or colorectal cancer. In premenopausal women, treatment for cancers of the pelvic region or breast can result in low libido, vaginal dryness, or sexual difficulties. Cancer treatments, including chemotherapy, hormone therapy, radiation, and surgery, can all bring on cardiovascular and kidney trouble, lymphedema (an often persistent swelling in the arm or leg following surgery or radiation to sites containing lymph nodes), chronic pain, chronic fatigue, and infertility. Phew. And those are only the physical effects.


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When I got cancer, I half expected the universe to balance the books. I should win the state lottery or at least get a lucrative book contract, and certainly the people with whom I did business should be extra nice to me. Instead, all the hassles that punctuate normal life tend to worsen. Money flies out the window; your kids act out; you argue with your spouse and haggle with your insurer and your brilliant career may hit the skids. So could your partner's. For a time, you and your entire family are in a lifeboat, bailing like crazy. You need lots of emotional support. "Whether it's a support group or something else, you need a team to get through cancer," says UCLA's Patricia A. Ganz, MD, an oncologist who has been on the forefront of survivorship research for 2 decades. "Many patients are asymptomatic when diagnosed, and it's a shock to switch from the world of the well to the world of the sick."

Why we're winning the war

Thirty years ago, a cancer diagnosis meant that you had a 50% chance of living for the next 5 years.  Today, those odds have jumped to 65%, thanks to a surge of breakthroughs, says Michael Thun, MD, head of epidemiological research at the American Cancer Society. "People are not only living longer," he says, "but they're living more comfortably."  Here are the major reasons why.

BETTER DETECTION
Quite simply, the sooner cancer is found, the better your chances. Take prostate cancer: After screening became common in the early '90s. the death rate fell 17% over the next 5 years. And now, doctors use genetic testing to determine who needs to be monitored most vigilantly. Another advance is computer-assisted imaging - such as virtual colonoscopy, which creates clearer images of the colon or intestines and can allow physicians to better spot small cancers faster.

TARGETED TREATMENTS
Traditional  chemotherapy attacks the whole body - the healthy and sick parts.  Targeted therapy delivers much more precise cancer fighting drugs only to
the cancerous parts of the body. Although there are many of these drugs in the pipeline, one of the most notable currently in use is imatinib mesylate (Gleevec), which improves leukemia and gastrointestinal cancer survival rates with fewer side effects,

PREVENTIVE MEDS
With the development of new drugs dubbed chemopreventive,  survivors of certain cancers can gain protection from recurrence long after traditional treatment is over. One study found that women with certain types of breast cancer who follow chemo with 5 years of tamoxifen have a 15-year survival rate three times greater than those who do not. In lung cancer those who take a combo of he drugs cisplatin and vinorelbine post-surgery up their 5-year survival odds by 15%.

NEW THINKING
Physicians have been reassessing the best way to treat slow growing cancers.  Instead of trying to eradicate the disease, they're managing cancer as a chronic illness: the goal has shifted away from cure in favor of maintaining health. For instance, research shows that men with low-grade prostate tumors have very little risk of dying from their cancer: they may be more likely to die from a surgery than the actual disease. Downgrading cancer's threat is an official goal; the National Cancer Institute has declared that by 2015, we should be able to prevent all cancer deaths and suffering  - Sharon Liao

Cancer is another country - especially if you're young. Ulman, then a 19-year-old college student in Rhode Island, was recovering from a rare cartilage cancer that required the removal of part of his rib cage while his college dormmates were attending keg parties and dealing with midterms. "I felt about 80 years old. I had this premature maturity."

I was not that young, but when chemo landed me in the hot-flash zone a decade before my friends, I felt like the sole inhabitant of a rather grim desert island. In 4 years, my body had gone through pregnancy, childbirth, cancer, chemotherapy, and menopause.

"Do you think you'll have kids?" a friend asked Ellie, a 36-year-old breast cancer survivor, as they sat watching the action at a playground. "I just said, 'I don't know.' I didn't feel like dragging out my whole medical history and reminding her that premature menopause had made it impossible."

And if you're dating? Should you mention biopsies on the third date - or the fifth? Withhold information about your partial mastectomy when you describe yourself on Match.com? "Because I've written about having cancer, it's right there on Google," says Denise, a breast cancer survivor. "That became an issue when I started cyber-dating. Once, a reporter for a major newspaper wrote me online, and for 2 weeks, we had a good time talking on the phone every night. When we made a date, I told him my full name. 'Good! I can look you up,' he teased. He sure did. When I got to the restaurant, there was one tall, thin, annoyed-looking guy standing outside." All flirtation was gone. Throughout dinner, her date was brusque, "acting as if he were being ripped off." He frowned while glancing repeatedly at her breasts, signed the check before they could order dessert, and fled as if from a plague-infested city. (The upside: Cancer weeds out the jerks. Like many survivors, this woman has gone on to a full, happy romantic life. As one survivor put it, "We have more to offer. Our hearts are bigger.")

A 2002 quality-of-life survey by Ganz and colleagues found that the majority of the 763 breast cancer survivors polled were doing remarkably well 5 to 10 years after diagnosis. Their brush with cancer inspired better health habits (diet, exercise, supplements) and renewed religious belief in many; the impact, both positive and negative, was strongest in younger women. The worst fallout was in the arena of "love life."

Sigmund Freud observed that love and work are the two poles of existence, and both suffer after cancer. Younger breast cancer survivors, according to Ganz's survey, took significant hits in the "job or career" department - and no wonder. The current health care system traps many survivors or their spouses in a form of de facto indentured servitude, like my friend in Minneapolis who continues in a sales job she loathes, 6 years after a stem cell transplant: "I can't quit," she says, "I'm uninsurable."

"We find this all the time," says Ulman, "especially with survivors between 20 and 40. The average college graduate changes jobs five or six times in his or her career - it's part of moving ahead. But cancer survivors and their partners may feel they can't take the risk." Many turn down promotions because they may need to take time off or because it is too disruptive to move away from their medical network.

Hoping for some sort of relief for survivors begins to feel Pollyannaish. How can an already overburdened health care system manage to sort out survivors' bank accounts, love lives, and depression, in addition to their persistent medical complaints?  Nevertheless, the experts I talked to were optimistic. "The future will be better," says Love. "Some very smart people," Johnson tells me, "are studying the issues we're talking about, and things will start to change in as little as 2 to 5 years, possibly sooner."

For starters, predicts Rowland: "You'll leave your active treatment phase with a standardized summary stating your illness, all the medications you got, the radiation you received and at which sites, and a prescription for follow-up care and surveillance." Passport for Care, being developed at the Texas Children's Cancer Center of Baylor College of Medicine, is one prototype. This secure, online, interactive resource will provide long-term pediatric cancer survivors with immediate access to abstracts of their medical histories and physician recommendations for maintaining health. The database will be up and running in 2 to 3 years; ultimately, it will be adapted for adult survivors.

As more survivor data is gathered, treatment can become more personalized, and subsequent problems - such as cardiac defects, chemobrain, or infertility due to certain drugs - anticipated or even prevented. "We are beginning to study the genetic factors that determine how people will respond to a certain chemotherapy drug, whether it will be effective and whether it will cause side effects," says Horning. "For example, I felt I might have a genetic sensitivity to a chemo drug, 5-FU. My mother had also taken it, and it caused physical problems for both of us." (When top clinicians are left guessing about links between a treatment and its subsequent effects, it is obvious there is an urgent need for more rigorous tracking.)

As for the survivor psyche (chemobrain-addled or not), life after cancer will never be a cakewalk. But it is easier to feel like a person instead of a walking arrangement of possibly deranged cells, now that formerly chilly cancer centers are sprouting warm and fuzzy sides including new "survivors' centers" with social scientists and therapists on board. Today, medical journals show a growing interest in such matters of the psyche as "intrusive cancer-related thoughts" among survivors (I for one am eager for the antidote), while the NCI's Office of Cancer Survivorship is channeling research dollars into acupuncture for menopausal hot flashes, the psychosocial impact of cancer-related infertility, and other whole-person subjects.

No longer marginalized and isolated, survivors can visit Web sites sponsored by the American Cancer Society, the NCI, the Lance Armstrong Foundation, and ASCO for help, including updated information, live chats with experts, peer-to-peer support, and links to resources for depression, post-traumatic stress, and other problems. On the practical side, the National Coalition for Cancer Survivorship offers a Web site (www.canceradvocrwy.org) with a "survival toolbox" and expert legal advice on insurance and employment rights.

The best news may be that there are simple things survivors themselves can do to improve their fate, and diet and exercise - wouldn't you know it - top the list. In a study this year by Rowan T. Chlebowski, MD, of the Los Angeles Biomedical Research Institute, breast cancer survivors had a lower risk of recurrence if they were eating a low-fat diet. The greatest benefit was for women with estrogen receptor-negative tumors, considered a marker of poor prognosis. Also this year, Harvard's Michelle D. Holmes, MD, discovered that modest exercise could make a big difference: Women who'd had breast cancer could cut their risk of dying in half by walking 3 to 5 hours per week. Exercise is thought to exert its effects in part by reducing circulating estrogens. (If it appears that breast cancer survivors, with their large numbers and unflagging advocacy, get the lion's share of attention, it's because it's true.)

However, that is not to say there is a surefire formula. It makes people more comfortable if they think they know why you got cancer and why you survived it (or didn't), and even slight acquaintances are quick to offer advice - "The most important thing is to have a positive attitude"; "You just need to accept your anger." Of the eight members of my original cancer support group, four of us are still standing. People want to know why. Did we get in touch with our emotions? Use more or better imagery?  Take the right supplements? Have stronger chemo or better radiation? Get more support from loved ones? Work off our bad Karma? I don't know. Maybe the non-survivors were the best of us, and they graduated while the rest of us are still trying to fill out our credits.

As every survivor knows, the first thing that cancer does is rip off the blinders. You are mortal. You know it. You can't unknow it. "When I graduated from college," recalls Ulman, "I got an offer of life insurance saying I would qualify for a great rate. Then I read the small print, which said I wasn't eligible. There are always these daily reminders."

A headache can never be just a headache; it could be brain metastases. Five-year or 10-year plans make us nervous, and when we hear someone say, "Next summer we'll..." we secretly mutter something like the Arabic phrase inshallah (God willing). Even writing this article as a "survivor" made me worry about the evil eye watching.

We all have our little post-traumatic triggers. There is a certain street comer I am unable to drive past without a momentary flash of nausea: That was the turnoff to my oncologist's office. Because I was holding a phone to my ear when I got various pieces of bad news (the ominous calcifications, the lymph node biopsy), my subconscious still believes, Bad things enter via the phone. I'm apt to jump when it rings.

We are hypersensitive to "anniversaries." Orange daylilies were blooming in lush clumps on the roadsides when I was diagnosed. Fifteen years later, it's July again, and I am barely noticing the daylilies because so many to-do lists are scrolling through my head. Until halfway through writing this article (did I mention the evil eye?) - I end up in the emergency room with blinding pelvic-abdominal pain. Lying inside the big clicking CT doughnut as eerie mechanical voices instruct me to hold my breath and let it out again, I think, Here we go again. I had forgotten how it was. I find out I have nothing worse than a urinary tract infection; my tests are fine, and so am I. (Is there a better word in the English language than unremarkable when applied to a CT scan?) Now the daylilies, the Queen Anne's lace, the fat robins, the lush woods of summer, are fully alive for me. That is why cancer survivors are the twice-born, to borrow a word from William James. Maybe it takes a serious illness - or 6 weeks on an open raft - to see the true paradise that exists beneath the surface.

"I hear all the time from my patients that they look on each day as a gift," Johnson tells me. "Shortly after I recovered, I was talking to an oncologist friend and I said, 'I just feel renewed.' And he said, 'You'll get over that.'

"But I haven't. After 15 years I still have that sense of renewal."

Judith Hooper, the author of Of Moths and Men, is working on a book called Morbid Sympathy on 19th-century Boston and its nervous invalids.


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