Judy Foreman

Nationally Sindicated Fitness, Health, and Medicine Columnist

The balance between life and disease

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Like many other Americans lately, I’ve found myself thinking hard about – and personally identifying with – the dilemma faced by Elizabeth Edwards and her husband, John, the former senator and would-be president.

His career, her health. Not an easy balancing act. Who should sacrifice for whom? How much? Nobody wants to be – or live with – a martyr. But nobody wants to deal with – or watch a loved one deal with – cancer unsupported, either. Ultimately, everybody’s mental health counts – the sick partner’s, the healthy one’s, and the kids’.

For 11 years, my husband, Tom, and I grappled with these dilemmas, first because of his lymphoma, and for the last five or six years, because of his prostate cancer as well. We knew, of course, that there were millions of other couples in similar situations, but that didn’t help much. We had to juggle each other’s needs – and each make sense of our own – with every up and down of the cancer roller coaster.

He had a need, which was sometimes tough for me, to minimize things, and to remain fiercely independent. I was more emotional.

He wanted to go through his first chemotherapy infusions alone, reading his physics journals and his newspapers. I wanted to be there. That’s what “good” wives did. But this particular man felt my particular presence would overly-dramatize things. He could do better, he felt, pretending that he was just sitting there reading, as usual, even while powerful drugs dripped into his arm.

So I let him — I developed a kind of rule; we worked as a team, but he was the patient, so on big decisions, he got two votes and I got one. Once, though, because he had seemed more anxious than usual before an infusion, I showed up at the hospital uninvited. That time, we were both glad I did.

Like Elizabeth Edwards, Tom, who died last year, was amazingly generous in encouraging me to keep up my own life, almost to the very end, when I did drop everything. So, for year after uncertain year, he would tell me to keep working, keep swimming, keep singing with my singing group, keep going to my book group, keep going to see my grandkids. All of which I did, with some guilt, but also, to be honest, with considerable relief. Unlike Tom, I had the luxury of getting away from cancer once in a while, and I like to think it helped us both that I did.

Still, I asked him over and over how, given his situation, he could be so generous. I didn’t think I would be. But Tom didn’t seem to see it as generosity. He saw it as protecting his best asset – me – from despair and burnout.

I never did burn out, but I did despair. We spent hours and hours over the years talking, and crying, about Tom’s fears and sadness and my dread of losing him. I always felt selfish and weak when he sympathized with my fear of life without him. But he kept telling me that, precisely because of that, I had the tougher job. I’m not sure if that’s correct, but his acknowledgement of how tough it was for me helped.

When I first read of the Edwards’ decision to stay in the presidential race, I was horrified. I thought he was being utterly selfish, that they were painting an overly optimistic view of her prognosis and that he should drop out now and focus on being her husband.

But then I thought about her, and Tom. From Tom’s example, I could believe that, from the bottom of her soul, she would not want him to give up his (and their) dream, would not want to take on the “sick role” any sooner than necessary, would not want to be a burden. I think she is absolutely right to urge him to keep running. I’m less sure whether he’s right to agree.

Unlike Tom and me, the Edwards’ case involves the rest of the country, or could. If he wins and she’s dying, how could he possibly balance her needs against the world’s ? But they’re not there yet. Cancer is a chronic disease until it becomes a fatal one, and, as we discovered, it’s quite possible to have many good, relatively disease-free times for many years.

On the other hand, cancer is a crapshoot. You never quite know how pessimistic or optimistic to be. You never quite know which doctors are giving it to you straight, or who’s right about the statistics and the studies and the chances.

So, you do your best, individually and together. And you never really know if you did it “right.”

How to cope with shock of cancer diagnosis

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Late last fall, Dartmouth Medical School researchers reported in the journal Cancer that all newly diagnosed breast cancer patients in their study experienced at least some level of distress, and nearly half met the criteria for a significant psychiatric disorder such as major depression or post-traumatic stress disorder.

Well, duh!

Is it really news that a serious medical diagnosis can shake a person to the core? The only surprise to me is that a study like this is necessary. While some medical schools are adding classes in things like “how to deliver bad news,” the medical establishment as a whole still isn’t as good as it could be at helping people who go in a heartbeat from merely having a medical appointment to wondering how long they have to live.

Sure, cancer specialists are busy, as Mark T. Hegel , the clinical psychologist who headed the Dartmouth study, put it. ” They have short visits. They are very focused on treating the cancer. They are not well trained to look at the psychological issues.”

But we’re talking major life-altering event here. And while there are books, groups, and therapists galore to help with the long haul — clarifying the diagnosis, bearing up under treatment, then living the rest of your life as best you can — there’s much less to help with the first days and weeks after your life has been turned upside down.

Unfortunately, I’m speaking from personal experience. My husband’s two cancer diagnoses over the past 11 years were devastating to both of us. Dealing with everything that came later, including his death last summer, has also been difficult, to put it mildly. But for sheer, soul-shattering shock, the first hearing of the bad news was in a class by itself.

I learned — the only way, the hard way — how to muddle through the early days of a terrible diagnosis. Eat. Sleep, with sleeping pills if necessary. Breathe. Talk to a few close people. Don’t, as I did, tell everybody every single medical bulletin — you’ll spend all day and evening on the phone. Triage your life: Cancel what you can, but not the fun things — in my case, exercise and singing.

Do cruise the Internet for information about the disease if that helps control your anxiety, but log off immediately if it upsets you too much. You have doctors. You don’t have to become the molecular biologist or brain surgeon who will fix everything. Despite my decades as a medical journalist, I found that truly understanding a complex diagnosis is a daunting intellectual and emotional task.

A life-altering diagnosis, in other words, moves you abruptly from a normal existence into a parallel universe of fear and disease, though illness, of course, is part of life, too.

Social psychologist Jessie Gruman puts it this way in her wonderful, forthcoming book, “AfterShock : What to do When the Doctor Gives You — or Someone You Love — a Devastating Diagnosis,” for which she interviewed more than 250 people.

“Every time I have received bad health news,” she writes, “I have felt like a healthy person who has been accidentally drop-kicked into a foreign country: I don’t know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map, and I desperately want to find my way home.”

Gruman, 53, who is president of the Center for the Advancement of Health, a nonprofit patient education group based in Washington, D.C., has been drop-kicked into this foreign world four times, each unexpectedly.

The first was Hodgkins’ disease, a type of cancer, at age 20. “I was a total wreck,” she recalled recently. Then cervical cancer, picked up by routine screening when she was 30. “I had a successive series of operations that ultimately left me without a uterus.” Then, at 47, a terrifying case of viral pericarditis — an infection in the sac around the heart that landed her in the intensive care unit for eight days. Then, at 50, colon cancer, another surprise picked up by a routine colonoscopy.

She’s fine now, and armed with hard-won wisdom. A bad diagnosis “is a crisis. Treat it like one. Don’t try to go on as though nothing is happening to you. Don’t go to work for at least 48 hours, and cancel your social engagements until you get your feet back under you.”

You have to put yourself first. “You owe no explanations to anyone right now,” she writes. “Talk if you want to talk, cry if you feel like it. There is no particular benefit or harm in either. You are not responsible for taking care of others who are distraught at your news.” What you do have to do is make sure to set up your next doctor’s appointment and remember that “you will not always feel like this.”

Hester Hill Schnipper , chief of oncology social work at Beth Israel Deaconess Medical Center, has gotten bad medical news twice in the last 12 years, both times a diagnosis of breast cancer. “The very beginning, psychologically, is the worst time,” said Hill, author of “After Breast Cancer: A Common-sense Guide to Life After Treatment.” Things “always get better than the first couple of days,” she said. “Everybody copes, because what is your choice?”

If you have an inkling that your doctor visit may yield bad news, take someone with you, said Nicholas Covino , a clinical psychologist who heads the Massachusetts School of Professional Psychology. People often hear bad news alone, he said, “then have to find their way home by themselves.”

Lastly, don’t be surprised if, on top of your other troubles, your self-esteem takes a nose dive, said Dr. John Wynn , medical director of PsychoOncology at the Swedish Medical Center in Seattle. “The feeling is often one of shame, of punishment,” said Wynn. It’s irrational, but people often feel, “I am bad because I am sick.”

In truth, you are not bad because you are sick, or vice versa. You are in crisis.

So if you have just gotten bad medical news, take Jessie Gruman’s words to heart: “You will not always feel like this.”

Getting Warmer in Bid to Kill Tumors

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A year ago, when Gayle Driscoll’s, breast cancer recurred on her skin, the 63-year-old retired teacher from Barnstable tried an experimental treatment that gave her radiation therapy some extra oomph . Every time she lay down for radiation treatment on her chest, her tumors were also heated with a special device that emitted radio frequency waves. After six weeks, the skin tumors were gone.

The heat therapy called hyperthermia was meant only as a local treatment — and the cancer ultimately spread to her bones — but it was “psychologically important” to her to see the tumors in her skin disappear, she said.

Hyperthermia, in which microwaves are used to raise the temperature of a tumor or the patient’s whole body to 104 to 106 degrees Fahrenheit, is a new twist on an old treatment idea that has gained new currency recently thanks to some successful studies.

Hypothermia significantly boosts the killing power of chemotherapy and radiation. It is generally used to help prevent local recurrences, but some doctors speculate that may improve overall survival as well. . At least eight studies in recent years have shown that adding hyperthermia to chemotherapy or radiation can improve local control of cancers of the esophagus, cervix, head and neck, brain, melanoma and breast cancers that have spread to the chest wall, said Dr. Mark Dewhirst, director of the hyperthermia program at Duke University Medical Center in Durham, N.C.

Scientists who have observed first hand the effects of hyperthermia are impressed. “I’m amazed at some of the tumors that just melt away with the combination of radiation and heat,” said Dr. David Wazer, radiation oncologist in chief at New England Medical Center.

At Long Beach Memorial Medical Center in California, Dr. Nisar Syed, director of radiation oncology, has treated more than 3,000 patients with hyperthermia plus radiation over the years. In many cases, “we saw rapid regression of the tumor,” he said, and in some cases, improved survival as well.”

In the future, hyperthermia could turn out to be among the most powerful anti-cancer weapons yet. Consider this idea, now being studied at

Duke: Researchers have created a tiny bubble, or liposome, with water on the inside and a ring of fat on the outside. Mixed in with the water is a chemotherapy drug, doxorubicin. The liposome is designed to be stable at body temperature but to burst when heated. By using hyperthermia to explode the liposomes, Dewhirst has shown in mice that doctors can deliver 30 times more chemotherapy than would otherwise be possible.

Scientists think hyperthermia probably fights cancer in several ways.

“When you combine heat and radiation, the cell-killing of cancer cells is better,” said Dr. Jay Harris , chairman of radiation oncology at both Dana-Farber and Brigham and Women’s Hospital.

Radiation works by damaging DNA. But there must be enough oxygen nearby for this damage to occur. Parts of tumors are tough to kill because they have a poor blood supply and thus, low oxygen levels. Raising the temperature of a tumor brings more blood, hence more oxygen, to the tumor.

With chemotherapy, drugs get in through small channels on the cell surface. “The heat opens these channels so that chemotherapy drugs can more easily enter in,” said Wazer of New England Medical Center.

Hyperthermia also seems to “jump-start the immune response,” at least in mice, said Elizabeth Repasky, an immunology professor at the Roswell Park Cancer Institute in Buffalo, N.Y., who is now looking at the effects in humans. Just as a fever with the flu may boost immune response, so may hyperthermia, a kind of artificial fever.

The idea of using heat to treat cancer started more than 100 years ago when an American surgeon, Dr. William B. Coley, noticed that some cancer patients who also had high fevers from bacterial infections had their tumors shrink. He began inducing fevers on purpose in cancer patients by infecting them with bacteria.

Several decades ago, a number of medical centers, including Dana-Farber and Johns Hopkins Medical Institute, began pursuing the idea — with disappointing results. Insurance payments for the procedures were low and a major study about 15 years ago showed no benefit to hyperthermia, though the study was highly flawed.

“So the technique was by and large abandoned,” said Wazer of NEMC.

The good news is that today, reimbursement rates are rising and the instruments that can deliver microwaves even to tumors deep into the body are more precise. In the last few years, new , better-designed studies “have rekindled interest” in the idea, said Harris. Moreover, the National Cancer Institute recently opted to grant $19 million to Duke to continue its hypothermia research.

Among the studies turning the tide for hyperthermia is one published last year by Dr. Ellen L. Jones, a Duke radiation oncologist. Writing in the Journal of Clinical Oncology, her team reported that, compared to patients getting radiation but not hyperthermia, those who got both had a significantly reduced the risk of recurrence of”superficial” tumors, chiefly breast cancers that had spread to the chest wall.

“I really trust the data coming out of this Duke group,” because the team was so meticulous, said Harris, who was not involved in the study.

In another study of 68 women with cervical cancer in the US, Norway and the Netherlands, also published last year, Jones and colleagues showed that a triple combination — hyperthermia, radiation and chemotherapy — was highly effective at lowering the risk of recurrence. A larger study comparing this triple treatment with standard treatment is now underway.

Dr. Joan M.C. Bull , director of thermal therapy research at the University of Texas Medical School at Houston is even pursuing whole-body hyperthermia for some kinds of cancers, including metastatic pancreatic cancer. Bull places patients, head and all, inside a radiant heat machine that brings body temperature to that of a high fever, about 104 F. It’s very safe, she said, though patients are monitored carefully. Some patients get “cranky” during the treatment, she said, as they might with a fever.

Working with rats, Bull has heated the body for about six hours, and found that chemotherapy can be given before, during and after heat treatment. Her early, still-unpublished, results “appear promising,” she said, particularly for cancers that have spread beyond a local area.

Clearly, more research is needed. But many regions now have at least one center. In Boston, it’s New England Medical Center; in Providence, a center is about to open at Rhode Island Hospital.

So if you or a loved one is getting treated for cancer, it’s worth asking a doctor if hyperthermia might help.

You’re Getting Sleepy; Could that Stop Cancer?

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Melatonin, long known to insomniac Americans as an over-the-counter sleep aid, is now being studied as a way to prevent and treat breast and other cancers.

Dubbed the “hormone of darkness,” melatonin is a hormone that is made by the brain’s pineal gland at nighttime. This summer, researchers at Brigham and Women’s Hospital led by pidemiologist Dr. Eva Schernhammer showed that women who produced the lowest levels of melatonin had a 70 percent higher chance of getting breast cancer than those with the highest levels.

Schernhammer’s group had previously shown that women who work at night are at higher risk of both breast and colon cancer. Light at night can shut off melatonin production.

A Finnish study to be published this fall explores whether women who sleep 9 hours or more a night — and hence produce more melatonin — are at lower than average risk of breast cancer.

A co-author of that study, cancer epidemiologist Richard Stevens of the UConn Health Center in Farmington, Conn., said that breast cancer rates are much higher in industrialized countries, where, among other things, people use artificial light at night, which suppresses melatonin production.

“We can’t say yet, but the evidence is accumulating that light-at-night, and the consequent decrease in melatonin, may be a major driver of breast cancer,” Stevens said. From an evolutionary point of view, melatonin may have developed as a signal to tell animals when to breed. In sheep, melatonin levels rise in the fall as the nights get longer, and ewes become fertile — perhaps as nature’s way of insuring that when they give birth four months later, the weather will be balmier.

Melatonin is also an important regulator of the circadian clock in the brain, which keeps the body on a regular cycle of day and night. Light, whether from the sun or electric lights, suppresses melatonin production.

But when light disappears, and darkness falls, there’s a cascade of nerve signals from the eye to the pineal gland, which then starts making melatonin.

That’s why melatonin has been popularized as a sleep aid. But a government study in 2004 found the melatonin pills on the market had limited effectiveness. A more recent study from MIT suggests that the problem may simply be dosing: The pills that are currently sold in healthfood stores are many times too strong. A dose of only .3 milligrams helps people fall asleep faster, according to a study led by Richard Wurtman, director of MIT’s Clinical Research Center.

Frustrated by the high rates of breast cancer in industrialized countries, Stevens of UConn hypothesized back in the late 1980s that light-at-night might drive cancer and that melatonin might protect against it.

“We know that if you take out the pineal gland in animals, that removes all melatonin, and then if you inject cancer cells, the cancer growth rate increases,” said Steven Lockley, a neuroscientist at Brigham and Women’s, who is now studying blind women to see if they have higher than normal levels of melatonin, and whether they get less breast cancer. “We know that when you put an animal in constant light, that also stops all melatonin production, and you get a similar response. And if you then treat an animal with melatonin, you can slow down the cancer rate.” Researchers are just now starting to look at the treatment potential for melatonin.

At the Bassett Research Institute in Cooperstown, NY, Dr. David Blask, a senior research scientist, reported at a cancer meeting this summer that melatonin can “put cancer cells to sleep” by blocking their ability to soak up linoleic acid, which makes cancer cells grow rapidly. In animal studies, Blask said he has found that cancer cell growth is slower at night, when melatonin is highest, and faster during the day. He also found that adding melatonin to human breast cancer cells grown in rats can slow the cancer’s growth.

In other animal studies, Steven Hill, vice chairman of structural and cellular biology at Tulane University in New Orleans, has found that melatonin binds to receptors on both normal and breast cancer cells. Once it lands on a receptor, he said, it acts on chemical signals inside the cell to suppress estrogen, which drives many breast tumors. “We can prevent 85 percent of mammary tumors in our rats with a combination of melatonin and retinoid [vitamin A],” he said.

In Europe, studies of people with cancer who are given melatonin are also promising, though preliminary. Melatonin appears able to not only slow cancer progression and improve survival in advanced cancer patients, but to protect healthy cells from the side effects of chemotherapy and radiation, said Dr. Fade Mahmoud, a clinical instructor at the University of South Dakota School of Medicine who published a review of the studies this summer.

Spanish researchers have shown that melatonin acts in human breast cancer cells much like drugs called aromatase inhibitors, such as Arimidex, Aromasin and Femara. This means it can prevent the body from converting the hormone testosterone into estrogen.

Italian researchers, in a long series of human studies, have shown that melatonin, which appears to have little toxicity, can boost survival at least modestly in some people with melanoma and cancers of the lung, breast, kidney and other organs.

These studies “sound intriguing,” said Dr. Mark Pegram, director of the Women’s Cancer Program at the Jonsson Comprehensive Cancer Center at UCLA. “But obviously more experimental studies are needed to evaluate whether or not melatonin may play a role in breast cancer growth regulation.”

Spurred by the positive results, American researchers are starting to pay attention to melatonin. With colleagues at a cancer research center in Zion, Ill., Dr. William Hrushesky, a senior clinician-investigator at the Dorn VA Medical Center in Columbia, S.C., is doing a randomized, double-blind study with melatonin plus chemotherapy to see if melatonin helps lung cancer patients.

While it’s too soon to rush out and buy over-the-counter melatonin to fight cancer, it is a good idea to “live a melatonin-friendly lifestyle,” said Stevens of UConn.

That means going to bed earlier if you’re a night owl, making sure the bedroom is dark and keeping the light dim in the bathroom if you make nightly trips there.

If you’re a shift worker, ask your employer to explore changing the room lighting, more closely simulating normal night.

“The longer you stay in the dark,” Stevens said, “the more melatonin you’re putting out.”

A Diagnosis Of Cancer Is Trying For Any Marriage

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Cancer can be very tough on a marriage just ask Sandro Segalini, 64, of Falmouth.

His first wife died of breast cancer 14 years ago. His second wife, Marcia Woltjer, 59, left him earlier this year, three years after her own diagnosis with breast cancer. Segalini, a retired businessman, had been totally willing to take control of things and help Woltjer the way he had helped his first wife to be, as he put it, “chief cook, bottle washer, bandage changer, and jester.”

But Woltjer, a registered nurse who has since moved to Michigan, wanted someone who didn’t feel he had to be in charge all the time.

Obviously, when cancer strikes, there’s no easy role in any marriage, whether you’re the patient or the spouse. What makes some marriages fall apart under the strain of cancer and others get stronger? That’s a tough one, but researchers are finding some clues.

When it’s the man who has the cancer, the sheer fact of having a partner regardless of the quality of the relationship is linked to better survival and quality of life, according to a recent study of men with prostate cancer, by Dr. Mark Litwin, a professor of urology and public health at the Jonsson Cancer Center at UCLA.

But when it’s the woman who has cancer and that’s the scenario most frequently studied the quality of the relationship may matter more, perhaps because of the challenges to traditional gender and care-taking roles, said Laurel Northouse , a professor of nursing at the University of Michigan School of Nursing.

What many women both with and without cancer want, Northouse said, is not so much for the husband to be in charge, but for him to understand her feelings and to talk about his own.

For many couples, this means that when the wife gets cancer, both partners have to adapt, said Northouse. Men may have to listen, and express, feelings more, and women may have to turn to friends and supporters when the husband is maxed out on listening.

Researchers who studied 73 Israeli couples in which the wife had breast cancer found that if husbands were emotionally or behaviorally disengaged or unable to express their feelings in a constructive way, the wives were more distressed.

Other studies published in the 1990s also show that venting feelings in an uncontrolled way does not help, nor does criticizing each other’s emotional styles or withdrawing emotionally. Empathizing with each other’s feelings does help.

It’s also important, when the woman is the patient, for men to give up the desire to “fix” things, said Marc Silver, an editor at US News & World Report and author of the 2004 book “Breast Cancer Husband,” which he described as a “guide for clueless guys.”

“Every guy I interviewed said he had an urge to `fix it,’ ” said Silver, whose wife had breast cancer. Guys have “an inability to sit there with things not fixed. They want to get in there and make it better. But what guys really need to do is shut up and listen.”

Marc Heyison, founder of a Maryland-based group called Men Against Breast Cancer, which has a $1.1 million grant from the federal Centers of Disease Control and Prevention to help African-American, Latino, and Native American men support their wives with breast cancer, put it even more bluntly: “Be honest, men. You have to give up the remote control.”

Giving up control can be hard, especially when there’s disagreement about treatment. Silver recalled one wife with breast cancer who wanted holistic treatment. Her husband was appalled. But instead of taking charge, he just gently asked if there was any evidence for the holistic

Optimism isn’t the cure

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Nancy Achin Audesse, 45, knows a thing or two about serious illness and optimism.  

Audesse, executive director of the Massachusetts Board of Registration of Medicine, has had cancer four times: Hodgkin’s disease when she was 14, the first round of breast cancer at 33, the second bout (which included a relapse of the first, plus a whole new tumor) at 34 and melanoma at 37.”For someone who should have kicked off years ago, I’m fabulous,” she said recently. “I’m here, doing good deeds, trying to make health care better.” All along, she said, she has been “blessed by having a wacky sense of humor.”

But despite her seemingly relentless optimism, Audesse, who lives in Wenham, is quick to voice outrage at a belief that still runs rampant in our New Age-besotted culture: The idea that a positive attitude can mean the difference between life and death: “It’s not fair to put that guilt and emotional burden on a person.”

Indeed, there’s little scientific evidence for the idea that attitude influences survival. A new, albeit flawed, study published in March in the journal Cancer showed that optimistic people with lung cancer fared no better than those with bleaker expectations.

Overall, for every study that suggests a survival advantage to having a positive attitude, there are at least three that find no such effect, said Dr. Pamela Goodwin, a medical oncologist who directs the Marvelle Koffler Breast Center at Mount Sinai Hospital at the University of Toronto.

What is a useful attitude, psychiatrists and cancer specialists say, is to adopt whatever philosophy helps you stick with your treatment plan and to be “authentic,” that is, to acknowledge and express your honest feelings, positive or negative. And if, at some point, it is no longer realistic to hope for a cure, to re-focus your hope toward a more realistic goal: maximizing day-to-day quality of life.

 Dr. Jerome Groopman, chief of experimental medicine at Beth Israel Deaconess Medical Center and author, most recently, of “The Anatomy of Hope,” said he welcomed the Australian study, despite its flaws, because “there is this burden that patients carry, this mantra in the popular mind that is derived from some of the New Age books of the 1970s – that depression, anger and unprocessed emotions are what cause cancer. This is completely unsubstantiated.”

The insidious, flip side of this belief is “that, as the disease progresses, your character flaws will lead to your own demise. This is extremely cruel, scientifically incorrect – yet a very widely-held notion,” he said.

Dr. Jimmie Holland, an attending psychiatrist at Memorial Sloan-Kettering Cancer Center in New York and author of “The Human Side of Cancer,” agreed. “People can be pessimistic and do well,” she said, adding that optimism and pessimism are character traits “that have nothing to do with coping with your illness.” She laments what she calls “the tyranny of positive thinking.”

In many ways, life-threatening illness is like rape. Many people find it easier to believe that ill fortune hits people who have somehow asked for it – as in rapes blamed on women for wearing provocative clothing or being in the wrong part of town – than to accept that life can be a crapshoot in which very bad things happen to very good people, for no fair reason.

“People would rather feel guilty than helpless, that’s why people go for this stuff,” said Dr. David Spiegel, associate chair of psychiatry and behavioral science at Stanford University and author of “Living Beyond Limits.” People “want to have the fantasy of control, even if it makes them feel guilty.” Years ago, Spiegel ran a study suggesting that women with advanced breast cancer who participated in group therapy that encouraged them to express their feelings lived 18 months longer than those who had no such therapy. But other researchers have been unable to replicate these findings.

The real message from this work, he said, is to not get caught in “the prison of positive thinking,” but to “face what you have to face. If it makes you sad, cry. If it makes you angry, deal with that. If it makes you value the things you value, do that.” A hidden bonus is that some people with serious illness discover is that “cancer cures neurosis,” he added, meaning that some people learn to shed the fruitless worries of ordinary life by facing mortality and learning to “really appreciate the things that matter.”

Dr. Donna Greenberg, a psychiatrist at Massachusetts General Hospital who consults at the hospital’s cancer center, put it bluntly. “Patients shouldn’t be afraid that having a bad thought is going to make their tumor grow.” The idea “that if we will it, it will work out” is a “very American concept,” she said. “But life is more complicated than that.”

Feeling that you have to fake it – to help yourself or spare others your distress – may even make things worse, at least psychologically, because feelings of “inauthenticity” can be distressing in and of themselves, said Ellen Langer, a professor of psychology at Harvard University and author of “The Power of Mindful Learning.”

The bottom line? If you have cancer or any other serious disease and a positive attitude, that’s great. At the very least – and this is no small benefit – that may improve your day-to-day quality of life. But if you feel down, don’t feel you have to keep “soldiering on as if nothing happened,” Audesse advised. “Sometimes, you don’t want to be courageous. You want to curl up in a corner and suck your thumb.”

New Cancer Therapy Easier on the Patient

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Eighty-two year old Marie Desilets lives in Dunstable, about an hour’s drive from Brigham and Women’s Hospital in Boston. When she discovered that she needed radiation for breast cancer a year or so ago, she faced a dilemma.

She could get regular radiation treatments, which would involve being in Boston 5 days a week for seven weeks. Or, she could opt for a new type of radiation that involves only 10 treatments — given twice a day for 5 days.

In the standard method, the whole breast is irradiated; in the new one, radiation is aimed only at the exact spot where the tumor was.Desilets chose the latter, and went shopping every day between the first and second treatments. “It was a piece of cake,” she said. “I highly recommend it. I felt great the whole time.

“More than half of women with relatively small tumors opt to skip a lumpectomy and instead have their entire breasts removed — usually to avoid radiation. Radiation, which requires regular treatments for weeks and has side effects including skin irritation, is a huge hassle for those who live a long way from a medical center or whose work schedules make it difficult to spend part of every day getting treatment.

But the new procedure that Desilets had, called “accelerated partial breast radiation,” is likely to change such thinking.  An estimated 71,000 women each year may be potential candidates for the procedure which is already available at many medical centers, thanks to growing patient demand. Many insurers already pay for it.

It’s too soon to say that whether the new technique is ready to replace the old, which is supported by decades of practice and studies.”The quandary is that the rationale for partial breast irradiation is compelling, but we are moving away from something that is tried and true with excellent long-term results to something that has at least something of a question mark,” said Dr. Jay Harris, chief of the department of radiation oncology at Brigham and Women’s Hospital and the Dana-Farber Cancer Institute.

For that reason, he and others suggest that women considering partial breast irradiation be treated through clinical trials, a number of which are underway or about to start.

On the other hand, the risk of the new approach is probably small. Almost all the time, when a cancer grows back in the breast where it started, it does so right in the area where the initial tumor was, not in a more distant part of the breast, said Dr. Phillip Devlin, director of brachytherapy at Brigham and Women’s Hospital and the Dana-Farber Cancer Institute. That suggests tightly-targeted radiation should do the trick.Indeed, while radiation is important for reducing the risk of recurrence of cancer in the same breast, it does not affect overall survival.

Unlike chemotherapy, whose goal is to knock out cancer cells anywhere in the body, “radiation controls local recurrence,” said Dr. Oscar Streeter, associate professor of clinical radiation oncology at the Keck School of Medicine at the University of Southern California. “It does not have an effect on overall survival.”

Because of its newness, partial breast irradiation is generally recommended only for women with small tumors in only one section of the breast and no signs of cancer spread to the lymph nodes.In one of three forms of the new procedure, called catheter-based or interstitial radiation, doctors numb the breast, then insert 10 to 20 small tubes into the area where the tumor was. They then insert a radioactive “seed” containing Iridium 192 into each catheter, leave it in briefly, then take it out and put it in the next catheter.

The whole procedure takes about 10 minutes, said Dr. Frank Vicini, chief of oncology at the William Beaumont Hospital in Royal Oak, MI and principle investigator of a new trial of partial breast irradiation in 3,000 women. The radiation is given twice a day for five days — the tubes stay in the whole time — and provide the same tumor-killing effect as standard radiation, said Vicini, author of a study in 2003 of nearly 400 women, half of whom got the new radiation and the other half, whole-breast radiation.  After 5 years, the study showed, there was no significant difference in the rate of local recurrence.

A second approach is with a device called the MammoSite, which involves placing just one catheter into the cavity where the tumor was. So far, women receiving MammoSite treatment have only been followed for about two years, but the data look promising.

The third, and newest, approach involves an old-style external beam and is called 3D-conformal radiation or a similar technique called, IMRT, for intensity-modulated radiation therapy. Instead of targeting the radiation to the whole breast, the beam is aimed with exquisite precision, using CT scans, to just the area where the tumor was.

For Marie Desilets, who had the Mammosite procedure,  the new radiation was a breeze. “I didn’t feel anything. My skin didn’t get red. There were no repercussions at all.” 

Sentinel Node Biopsy – Ready for Prime Time?

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Anna Coppinger, 61, a school cafeteria worker from Hingham, lies waiting outside the operating room at South Shore Hospital in Weymouth, chatting with her husband and daughters –  and wincing whenever she jostled the needle that had been placed in her left breast several hours earlier to guide surgeons to the exact spot where her tumor lay.

As she liese there, a radioactive substance called technetium-99m sulfur colloid, injected earlier, is seeping through the lymph ducts in her breast toward lymph nodes in her armpit.

Like a growing number of people with cancer, Coppinger was about to undergo a relatively new – and still-controversial – procedure called sentinel node biopsy.

Instead of removing 10 to 20 lymph nodes in the armpit to check for signs of cancer, Coppinger’s surgeon, Dr. Suniti Nimbkar, is planning to remove just the first, or “sentinel,” node into which cancer cells were most likely to have spread. If that node turns out to contain cancer, Coppinger will have another operation to remove the rest of her armpit lymph nodes. But if it’s clean, she’ll get no further node surgery.

Ever since doctors began experimenting with sentinel node surgery in melanoma patients a decade ago, the technique has “caught on like wildfire with most surgical oncologists,” says Dr. Kenneth Tanabe, chief of surgical oncology at Massachusetts General Hospital.

Today, this state-of-the-art technique is well-accepted for melanoma, and is being studied for a number of other malignancies, including colon cancer. But perhaps its most controversial application is in women with breast cancer. The National Cancer Institute insists the procedure should be considered “investigational” until the results of two major studies, now underway, are available.

But around the country, surgeons like Nimbkar are already switching to the new procedure, convinced that there is no need to wait.

The argument in favor is clearcut. Many solid tumors have been shown to “drain,” or shed cancer cells, in an organized pattern, first to the nearest lymphatic ducts and nodes, then to more distant ones, although cancers sometimes  “skip” directly to distant ones. (The lymphatic system is part of the body’s immune defense system. Cancer can also spread directly through blood vessels.)

This means that taking out only the sentinel node could be just as reliable a way to tell if cancer has spread as more drastic node surgery. Indeed, two reviews published in 1999 and 2000 suggest that in breast cancer patients, if  the sentinel is negative, the other armpit nodes will also be negative 95 percent of the time.  If the sentinel node is positive, there’s a 25 to 50 percent chance that the other armpit nodes will be positive.

Sentinel node biopsy clearly causes less pain. And it avoids many of the complications of the full nodal surgery, which more than 80 percent of women suffer. These range from temporary discomfort to numbness, persistent burning sensations, infections, limited shoulder mobility and more rarely, lymphedema, in which the arm can become chronically swollen and prone to infection.

But a key question looms: Does taking out all the armpit lymph nodes make a difference in long-term survival, or is the outcome be the same if only the sentinel nodes are removed?

Historically, one of the main reasons that surgeons removed all the lymph nodes in the armpit of a woman with breast cancer was to get rid of any possible traces of cancer, says Dr. David Krag, the lead researcher for NCI’s study in Vermont and professor of surgery at the University of Vermont Cancer Center in Burlington.

But a government-sponsored study nearly 20 years ago began to challenge that notion. It looked at women with breast cancer who had all their armpit nodes removed and those who didn’t and could not find any  “survival difference,” says Dr. Jeffrey Abrams, senior investigator in the division of cancer treatment and diagnosis at the NCI.

 Indeed, “there is no firm evidence that removing involved lymph nodes improves survival, even though it is standard practice,” the NCI notes on its website (http://cancer.gov) “Randomized studies suggest that lymph node removal may not improve survival, although it is valuable in determining the stage of the cancer. Sentinel node biopsy can be used to determine stage, so that may be all that is necessary, even in node-positive women.”

On the other hand, the 20-year old American study that showed no survival difference did not have enough patients to detect differences of less than 10 percent in survival. Moreover, when data from this American study are lumped together with data from five studies from outside the US, the overall picture suggests that women who have full lymph node dissection do have a five percent survival advantage over those who don’t.

In other words, leaving cancerous nodes in the body does appear to be “dangerous for survival,” Krag says.

In Krag’s own study, 5,400 women will be randomized to get sentinel node biopsy plus a full armpit node dissection, or to sentinel node biopsy only. Those who get the full dissection then go on to get whatever subsequent treatment – chemotherapy or radiation – doctors deem best.

Among those who get only sentinel node biopsy, if there is no sign of spreading cancer, there is no further no surgery, although, like the first group, they get whatever chemotherapy or radiation they need. If there are signs of spreading cancer, those women get a full armpit node dissection, as well as appropriate further therapy.

 “Until you prove the ultimate survival is the same, you haven’t proved that sentinel node biopsy can replace complete removal of all the underarm lymph nodes,” says Abrams of NCI.

Krag’s study will also try to determine whether full armpit node dissection decreases the odds of recurrence of cancer in the armpit, and will compare the value of sentinel node biopsy versus full dissection as a way of staging patients, or classifying them into categories to determine their subsequent treatment.

The other major study is being led by Dr. Armando Giuliano, chief of surgical oncology at the John Wayne Cancer Institute in Santa Monica, CA.

In his study, which is designed to include 7,600 women with breast cancer, Giuliano’s team will give all the women a sentinel node biopsy. Women with negative sentinel nodes will receive whatever further therapy doctors think best.

Women with positive sentinel nodes – expected to number about 1900 –  will then be randomized to full armpit node dissection or no further node surgery or radiation. The idea is to see whether there is any therapeutic value to removing all the lymph nodes. But the prospect of leaving cancerous nodes in place is proving a tough sell, Giuliano says, because many women do not want to take a chance on leaving lymph nodes in if there are any signs of cancer. 

Both Giuliano and Krag will also use a new test to try to determine whether women whose sentinel nodes are negative may nonetheless have “micrometastases”- tiny traces of usually-undetectable cancer.

Normally, scientists examine lymph nodes with a simple test dubbed “H&E,” for hematoxylin and eosin, colored stains that make all cells visible and allow pathologists to see which cells might be cancerous.

The new technique uses IHC, or immunohistochemistry, which involves antibodies that stain only epithelial cells. A healthy lymph node usually contains no epithelial cells. But cancer cells are epithelial cells, so a node that contains even a few cancerous cells will stain positive.  The IHC technique, only done currently if there is ambiguity on the H and E test, can detect even one or two cancer cells.

At South Shore Hospital, Coppinger’s sentinel lymph node surgery takes less than an hour.

With Coppinger under general anesthesia, Nimbkar slips a sterile covering over a special wand hooked to a geiger counter on a table.

By now, the radioactive substance (technitium sulfur colloid)  that was injected into Coppinger’s breast earlier has migrated to her lymph nodes. Sure enough, as Nimbkar slides the wand over Coppinger’s armpit, the geiger counter squawks as Nimbkar finds a “hot spot.”

“This is just what you hope for,” says Nimbkar, as she makes a 1-inch incision just above the hot spot. Slowly, she dissects away the top layers of fat, probing with her finger until she locates the first node. Carefully, Nimbkar cuts out the node, then slips the wand back into Coppinger’s armpit. The geiger counter now registers almost nothing, a strong sign that there are no other nodes in the area.

“I think we’re good,” she says, beginning to sew up the small armpit incision before moving on to do a lumpectomy to remove the tumor in Coppinger’s breast.

A week later, Coppinger says she’s “doing terrific – I’m going to play baseball.”

Her lab results turned out fine, too. Her node was negative, which means it’s very unlikely that cancer has spread to any other nodes.

Hopes dim for controversial breast cancer treatment

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Convinced by doctors that bone marrow transplantation offered the best chance at survival, thousands of women with breast cancer have agreed to the controversial procedure — despite the lack of proof that it could save, or even prolong, their lives more than standard therapy.

Indeed, so many women — about 5,000 women a year — now undergo the treatment, arguably the most devastating procedure in modern medicine, that breast cancer has become the most common reason for transplants, edging out leukemia and lymphoma, for which there is considerably more evidence of efficacy.

Now, it appears that this faith in transplants for breast cancer — and advocates’ demand that insurers pay for it — may have been misplaced, or at least premature.

Pressured by patients and doctors, researchers have agreed to take the unusual step of posting abstracts of two US and three foreign studies on transplants and breast cancer on the Internet next month. They will give more details in May at the American Society of Clinical Oncology meeting in Atlanta.

That decision stems from a meeting of researchers and patient advocates in February at the National Cancer Institute, which sponsored the two American studies.

Susan Braun, a patient advocate and president of the Susan G. Komen Breast Cancer Foundation in Dallas who was at that meeting, says the group was concerned about not releasing findings before the data were fully analyzed, but didn’t want to “hold on [to the findings] waiting for the meeting in May.

Until they’ve fully analyzed their data, the lead researchers aren’t talking, even to collaborators, including some in Massachusetts, where insurance companies have been forced to pay for the transplant treatment.

That silence is fueling speculation that at least one study found no benefit for transplant in women with Stage IV (metastatic) cancer and another is inconclusive for women with Stage II or III cancer and 10 or more lymph nodes containing cancer.

Concern is also growing that insurers may stop paying for the $50,000 to $100,000 procedure, though Karen Ignagni, president of the American Association of Health Plans, a managed care group, denies it. “It would be wrong to suggest a conclusion that would make patients concerned about access to these procedures until we know what the research says,” she says.

But patients are nevertheless bracing for bad news. Amid the confusion, two things seem clear. One is that, in general, when studies show an obvious benefit of one treatment over another, they are stopped early, as happened when the drug tamoxifen was found to reduce the risk of breast cancer in high risk women.

These studies are “clearly not a homerun . . . or they would have met the stopping criteria,” says Dr. Steven Come, director of hematology/oncology at Beth Israel Deaconess Medical Center and a contributor to one of the American studies.

The other is that the studies have not gone on long enough to be truly informative. The American study called CALGB followed 874 patients for an average of 37 months; one called ECOG followed 553 patients for an average of 31 months. Usually, longterm survival is given after five years, not three or less.

Furthermore, even if the studies show no clear benefit for transplantation — in which patients are given near-lethal doses of chemotherapy, then “rescued” by infusion of stored immune cells — subgroups of women might still benefit, says Dr. John Durant, executive vice president of the oncology society.

“It’s a horrible situation for women,” says Fran Visco, president of the National Breast Cancer Coalition, an advocacy group. “If the studies are ambiguous, women should not have a transplant, except in a clinical trial. If more women had been told by their doctors to do that, we’d have better answers by now. Insurers should also be compelled to fund the trials like these that can provide better answers.”

But “in the absence of data, it’s mutual self-deception,” for women and their doctors to assume a transplant is better than standard therapy, says medical ethicist George Annas, professor of health law at the Boston University School of Medicine. Transplants are “heroic.” To put women through them without more evidence is mere “faith healing.”

Indeed, Memorial Sloan-Kettering Cancer Center in New York does not offer the procedure for breast cancer patients and in the past, only offered it in research settings.

If the findings do turn out to be ambiguous, says Braun of Dallas, it “will leave women very much where we are now. We would like to have seen more people in the clinical trials.”

“No kidding,” says Dr. Mary Horowitz, scientific director of the International Bone Marrow Transplant Registry and the Autologous Blood and Marrow Transplant Registry in Milwaukee.

Recruiting was a nightmare, she says, “because everyone thought they knew the answers,” and because mortality from the transplant procedure itself has dropped from about 15 percent to 3 to 5 percent for women with Stage II or III breast cancer. “I can see why women decided to take the chance.”

But what is “particularly wrenching is there was such a lot of hype around this procedure for women with breast cancer when it first came out,” in the early 1990s, says Grace Powers Monaco, a lawyer and head of the Bethesda, Md.-based Medical Care Ombudsman Program, which evaluates recommendations for transplants for HMOs and patients.

Some of those early studies found that as many as 20 to 30 percent of women with advanced breast cancer survived at least a few years after transplant, says Come of Beth Israel.

But that, as Monaco sees it, prompted women to feel, “ `I should get this treatment and I will not be randomized.’ Because of that, the data was delayed many years because people did not fill up the clinical trials.”

Indeed, faced with mounting pressure, including lawsuits, many insurers agreed to pay for the procedure, and some states, including Massachusetts, now even mandate coverage by law.

The bottom line, sadly, is that there will be no bottom line in the near future, although four other randomized studies on transplants for breast cancer are underway through the National Cancer Institute.

For the moment, though, the expected results from the current studies are simply “not sufficiently mature to analyze,” says Dr. Thomas Spitzer, director of the bone marrow transplant program at Massachusetts General Hospital and a contributor to the American study called ECOG, run by the Eastern Cooperative Oncology Group.

Come of Beth Israel, who participated in the CALGB trial, agrees. “While awaiting further analysis and follow up from these trials, women contemplating a transplant owe it to themselves to seek a variety of perspectives before making a final decision.”

“Personally, I can’t make up my mind” about the data, muses ASCO vice president Durant, who lost his wife to breast cancer. But he’s guardedly optimistic. Because these studies were so short-term, there’s “lots of time for benefits to appear.”

SIDEBAR:

How to learn more

To read more about the emerging data from studies of bone marrow transplantation for breast cancer, you can visit the website of Cancer Letter, www.cancerletter.com. The letter is privately published by journalists Paul and Kirsten Boyd Goldberg.

For the National Cancer Institute’s position on the issue, visit http://cancertrials.nci.nih.gov. Beginning April 15, you can read preliminary results of the studies and suggested interpretations of them at www.asco.org, the site of the American Society of Clinical Oncology.

Lymphedema finally getting some attention

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Marianne Lynnworth, 66, a writer and former geographer, isn’t sure why she got lymphedema, though she thinks a case of frostbite when she was a teenager probably touched off a hereditary tendency to the disease.

But she sure does know what a struggle it’s been for the last 52 years.

Sometimes, the swelling makes her legs so heavy it “zaps my energy,” says Lynnworth, who lives in Waltham. She can’t go shopping for more than an hour because standing in line becomes so difficult. “And I can’t wear dresses anymore because my legs look so swollen.”

For years, doctors had little to offer patients with lymphedema, a condition in which damage to the lymphatic system causes the arms or legs to swell to several times their normal size. It also sets the stage for massive infections from even the tiniest cuts in the skin.

In fact, lymphedema has until recently been such an orphan condition — it falls through the cracks of medical specialties — that even today no one is quite sure how many people have it.

Some put the figure at 1 to 2 million Americans, plus another 250 million worldwide, many in tropical countries where parasites cause a severe form of the disease called elephantiasis.

For some, lymphedema stems from genetic bad luck. Others acquire it after treatment for other diseases, usually cancer. Roughly half a million breast cancer survivors have it from surgery or radiation that destroys lymph nodes in the armpit; others get it in the legs after lymph nodes in the groin are destroyed by surgery or radiation for melanoma and prostate cancer.

But thanks to strenuous efforts by patient advocates and a growing understanding among doctors, lymphedema is finally moving out of the closet — and into the clinic.

In the last year and a half, five lymphedema programs have gotten going in the Boston area. Dozens more have sprouted nationwide, driven by the growing popularity of a low-tech treatment from Europe that, proponents say, combats many of the complications of lymphedema.

The lymphatic system, specialized vessels through which a clear, protein-rich fluid flows, is an under-recognized but crucial part of our circulatory and disease-fighting machinery.

It is “the garbage-hauling system of the body,” says Dr. Robert Lerner, a New York surgeon who has pioneered American lymphedema care and who, with Dr. A. Benedict Cosimi, now runs a new Boston clinic that opened in January, backed by Massachusetts General and Brigham and Women’s hospitals and the Dana Farber Cancer Institute.

In the bloodstream, much of what we call blood is actually plasma, a clear fluid. When you sprain your ankle, for instance, much of the swelling is plasma that seeps out of tiny capillaries into tissues around the injury. Most of this fluid is then reabsorbed into the bloodstream through small veins.

But a small part of it, called lymph, is picked up by lymphatic vessels instead, which carry it to a duct in the chest, from where it is dumped back into the primary circulation. The lymph often contains bacteria, dead white blood cells used to fight infection, proteins, fats, and, sometimes, cancer cells that have been shed from a tumor.

As lymph flows slowly back toward the primary circulation — there’s no pump like the heart to push it — the lymph nodes filter out the debris.

But if these nodes or lymphatic vessels are damaged, there is no place for the lymph to go, notes Dr. Sumner Slavin, a plastic surgeon and lymphedema researcher at the Beth Israel Deaconess Medical Center.

And as the fluid builds up, any cut in the skin can trigger a raging infection called cellulitis (not to be confused with the skin-puckering condition called cellulite). In fact, lymphedema provides a veritable feast for invading bacteria.

Each infection can lead to scar tissue that further damages lymph vessels, setting the stage for yet more lymphedema and cellulitis.

So the trick is getting the fluid that is stuck in a limb past the damaged lymph vessels and back into circulation.

Elevating the swollen arm or leg can help, but that’s often impractical on a sustained basis. Pneumatic pumps help, too, but they work best in the earliest stages of the disease. Once lymphedema has progressed to fibrosis, a hardening of the tissue, pumps may actually damage still-healthy lymph vessels.

Surgery to remove skin and fat and squeeze out fluid can help in extreme cases, but swelling almost always returns.

Diuretics — pills that reduce fluid retention — may get rid of excess lymph, but they leave behind a concentrated solution of lymph proteins that acts as a chemical magnet for more fluid. Another drug, coumarin, has been tried in some countries, though it’s not available not here. It has been linked to several deaths.

That leaves the low-tech stuff, typically a combination treatment called complete decongestive physiotherapy. This includes manually draining the lymph fluid, a technique in which a physical therapist lightly massages lymph vessels to stimulate lymph flow; scrupulous skin care to guard against infections; using non-elastic bandages that squeeze the limb tightly at the wrist or ankle, and exercises done while the bandages are in place.

Finding therapists trained to do lymph drainage can be tough.

The Spence Center for Women’s Health in Cambridge, believed to be the first local clinic to offer it, sent its lymph therapist, Cindy Stewart, to Canada for training.

At St. Elizabeth’s Medical Center, a lymphedema service, including a therapist, opened two weeks ago, says Dr. Kathleen Hogan, medical director for women’s health.

The Lahey-Hitchcock Medical Center in Burlington will open a lymphedema service as soon as its therapist finishes training, probably in May or June, says Dr. Donald Breslin, a peripheral vascular disease specialist. Mt. Auburn Hospital in Cambridge hopes to follow suit soon thereafter.

But promising as it sounds, hard data on the effectiveness of lymph drainage massage are scarce, says Slavin of Beth Israel.

Though apparently safe, the technique can be both “onerous and expensive,” he adds. Sessions cost roughly $100 each — insurance coverage is spotty at best — and many patients need one to two sessions a day for up to four weeks.

“That’s why I haven’t tried it,” says Allison Stieber, a 46-year-old Somerville copy editor who has had lymphedema for 17 years.

But Lerner says he has treated more than 4,000 people and has followed 2,000. Most of them, he says, experience a 60 percent reduction in swelling, progress that persists with an at-home maintenance program.

A study published in January in the journal Oncology suggests that in many patients, lymphedema can be reduced by at least two-thirds with the combined treatment.

Still, the ultimate solution may be a different approach to surgery — removing fewer lymph nodes in the first place — and perhaps new ways to get damaged lymphatic vessels to regrow.

Surgeons are already cutting back on the number of lymph glands they remove. At some hospitals, they are experimenting with removing only a few “sentinel” nodes in the armpits of women having breast surgery, says Lerner, especially if the women have small tumors and plan to have chemotherapy.

Most surgeons, though, are awaiting the results of a major study before changing their practice, says Dr. Susan Pories , a breast surgeon at Mt. Auburn and Beth Israel.

Slavin, meanwhile, is trying to coax damaged lymphatic vessels to regrow.

The bottom line, he says, is that “we should never underestimate the capacity of the human body to repair itself.”

Tips to prevent and help control lymphedema:

  • Keep the skin on the affected limb very clean.

  • Don’t cut your cuticles, because bacteria can enter the body through cracks in the skin. Use a cuticle cream instead.

  • Try to avoid having blood drawn from the affected arm.

  • Try to avoid having your blood pressure taken in that arm.

  • Seek treatment promptly for an injury or infection.

  • Avoid lifting heavy objects with the affected arm.

  • Wear gloves while gardening.

  • Wear a pressure sleeve during airplane travel.

  • Try to avoid scratches or bites from animals or insects; if they occur, seek treatment right away.

  • Avoid tight clothing.

  • Try to maintain optimum weight because obesity may make lymphedma worse.

  • Exercise may help.

  • Wear sunblock on the affected limb — it’s more susceptible to sunburn.