Katherine Hobson

As a cardiologist, David Martin is accustomed to reading scientific studies. So when he received a prostate cancer diagnosis in October 2012, he pored over the medical literature to learn as much as possible about his treatment options. Martin, from Medford, Ore., was 50, and with a wife and three sons, he wanted to maximize his chances of having the tumor permanently eliminated, while minimizing his chances of complications. These complications, such as erectile dysfunction and urinary incontinence, occur at rates Martin found to be “disturbingly” high.

As a result of his research, Martin ruled out radiation therapy because the complications can tend to show up later on. Instead, he opted to face the issue upfront. “I wanted to get it treated and move on with my life,” he says. That meant he would have to undergo a radical prostatectomy, either by regular open surgery or by minimally invasive surgery, using a laparoscope (a thin tube with a light and lens at the end) or a robotic surgical system.

Many prostate cancer surgeries are now performed using robotic systems, and they’re increasingly being used in other cancers, too, including gynecologic, head and neck, and thoracic. When performing an open operation, the surgeon makes an incision large enough to see into the body. In a laparoscopic procedure, the surgeon directly manipulates special instruments through small incisions. With robot-assisted surgery, the incisions are still tiny, but the surgeon sits at a console to perform the procedure by directing the robotic arms. This process enables finer movements yet prevents the surgeon from feeling the tissue in the same way as in open surgery.

When performed correctly by well-trained surgeons in appropriate patients, robot-assisted procedures have the potential to prevent short-term complications, such as blood loss, and to reduce the length of hospital stays, compared with open surgery.

Even with all the potential benefits, there exists little research proving that robot-assisted surgery can improve long-term outcomes compared with open or laparoscopic surgery. There is also a lack of trials comparing this surgery with laparoscopic procedures. Moreover, robotic systems are expensive. According to a recent observational study, robotic surgery systems add about $2,200 to the cost of a hysterectomy for a benign condition. (These extra costs are generally absorbed by the hospital, with insurers and patients paying the same amount for the procedure regardless of whether the surgeon uses a robot.)

We think there are some areas where there’s currently a benefit, some areas where there’s probably a future benefit, and many areas where there’s no clinical benefit.

Still, the few studies concerning this surgical technique are promising. A 2012 review of robot-assisted oncologic surgery reported that observational and population-based studies demonstrated fewer surgical complications for some robot-assisted procedures that have been in use for more than five years, including prostatectomy and bladder removal. For robot-assisted radical prostatectomy, the review found that oncologic outcomes were “at least equivalent” to open approaches, with improved rates of decreased surgical complications compared with both laparoscopic and open surgeries. But comparisons of long-term oncologic and functional outcomes—such as incontinence&mdash;are “sparse,” according to the study’s authors.

“We think there are some areas where there’s currently a benefit, some areas where there’s probably a future benefit, and many areas where there’s no clinical benefit,” says Martin Makary, a surgeon at the Johns Hopkins Hospital in Baltimore, who has researched robot-assisted surgery. The challenge is determining which technique will benefit a particular patient.

Surgeons using robotic systems say they can perform minimally invasive operations that would be very difficult or impossible using a traditional laparoscopic procedure. “When you do laparoscopic surgery, you have a hole in the patient and use long instruments, using part of the body as a fulcrum,” says John Meehan, a surgeon at Seattle Children’s Hospital in Seattle. "With the robot, you get 3-D vision and instruments"that bend or hinge like a real arm, he explains. Somesurgeons also point out that it's more comfortable to sitat an ergonomically designed console versus standingat a patient's side maneuvering awkwardly withlaparoscopic instruments. These ergonomic benefitsare believed to reduce surgeon fatigue and potentialtechnical errors, particularly during long operations.

"In gynecologic cancer surgery, the robot has madea big impact because we've converted a lot of ouropen cases into [minimally invasive] cases," says ChadMichener, a gynecologic oncologist at the ClevelandClinic in Cleveland.

Even surgeons who aren’t extensively trained in conventional laparoscopic techniques can learn to use robotic systems because of their easier-to-use instruments and shorter learning curve. Myriam Curet, a surgeon and chief medical adviser at Intuitive Surgical, manufacturer of the widely used da Vinci system, says the technology is not intended to substitute for proven laparoscopic procedures, but to extend the benefits of minimally invasive surgery.

Still, no surgery is without risks. While studies show that robot-assisted procedures are generally safe, Makary says, complications can occur. For example, procedures could take longer to perform, meaning patients would spend more time under anesthesia. Also, the robotic controls make it more difficult for a surgeon to feel other tissues and organs in the body. This makes it easier to nick an artery or other crucial area. The Food and Drug Administration issued a warning to Intuitive Surgical for failing to report such adverse events, and the company was sued over injuries allegedly caused by its robotic system. Curet says that, overall, complication rates from robot-assisted procedures are comparable with those seen in open surgery, based on current data.

Physicians say it’s essential to determine which cases might better benefit from the robot-assisted approach. “Who are those patients? What are the characteristics of the surgery or the cancer?” asks Jason Wright, an assistant professor of obstetrics and gynecology at NewYork-Presbyterian Hospital/Columbia University Medical Center in New York. It’s hard to recruit patients for randomized trials that might answer those questions because so many patients want robot-assisted surgery, regardless of whether it’s appropriate for their situation. “Some people do come in requesting it,” says Kirsten Greene, associate professor of urology at the University of California, San Francisco.

As medical facilities compete for every healthcare dollar by marketing their technology, patients not only expect but also demand access to the latest devices, regardless of evidencebased outcomes. Wright was an author of a 2012 study examining the marketing of robot-assisted gynecologic surgery on 432 hospital websites. While most sites reported improved short-term outcomes with a robotic system, very few cited limitations of the devices, such as complications, operative time or cost. And a study co-authored by Makary and published in the 

 in 2011 reported that of the 41 percent of 400 hospital websites mentioning robotic surgery, 89 percent made statements of clinical superiority, and 32 percent specifically cited improved cancer outcomes. None mentioned any specific robotic-surgery risks.

Like acquiring any expertise, surgeons have a prolonged learning curve as they get up to speed using a robotic system. Intuitive Surgical provides training, including practice procedures through simulators and models, but training needs vary according to the surgeon’s baseline skills and other factors, Curet says. Requirements for how many supervised cases surgeons perform before operating independently and how many cases they must regularly perform to maintain their skills are determined by hospitals, so there’s no universal standard. In the department of obstetrics and gynecology at the Cleveland Clinic, for example, surgeons must perform 20 to 25 supervised surgeries before they can perform the procedures on their own, and must perform 20 robot-assisted procedures per year to maintain their privileges, Michener says.

It’s important when people who are confronted with this to look at the surgeon’s experience and outcomes and feel like they’re cared for.

Jim Hu, director of urologic robotic and minimally invasive surgery at the University of California, Los Angeles, who performs both open and robot-assisted procedures, says patients should focus their search on the surgeon, not the technique. “A robot in the hands of someone who isn’t very good isn’t going to help cure cancer more than someone who is good performing an open surgery,” he says.

“It’s just another tool that a surgeon uses,” Greene says. And it’s not appropriate for everyone. Certain problems, such as severe lung or heart disease, or extensive scarring from previous surgeries, actually make laparoscopic and robotic procedures more dangerous, she adds.

Martin opted to have Hu use a robotic system to operate on him in January. He says his physical recovery was swift and his function rapidly returned. He urges other patients to do their homework before deciding on a treatment. “It’s important when people are confronted with this to look at the surgeon’s experience and outcomes and feel like they’re cared for,” he says.

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Patients should research both the surgeon and the technique when deciding on treatment.

Is Robot-Assisted Surgery the Best Treatment for Your Cancer?

Experts emphasize that patients should search for the best surgeon, not just the one who uses a robot. Patients should begin by asking their primary care physician or oncologist for recommendations based on expertise, experience and track record. And if they know of other patients with the same disease, ask them about their experiences.

Martin Makary, a surgeon at the Johns Hopkins Hospital in Baltimore, suggests patients get thorough information on all of their surgical options—open, laparoscopic and robotic. To that end, it helps if a surgeon has been trained in and uses all three techniques, depending on the disease and the patient, says Jim Hu, director of urologic robotic and minimally invasive surgery at the University of California, Los Angeles. They should ask about if any research supports its use in particular cases.

As with all operations, the surgeon’s training and experience matter. Hu says indicators of an expert include fellowship training in robot-assisted surgery, publication articles, invited presentations on the topic and hosting fellowships. He also says having performed surgeries live online is an indicator of confidence and experience.

Furthermore, a good surgeon will answer questions, and patients shouldn’t hesitate to ask them, says Kirsten Greene, associate professor of urology at the University of California, San Francisco. Both the benefits and the risks should be reviewed for the specific situation. Patients should ask about the surgeon’s own outcomes with the procedure, including recurrence rates, the incidence of side effects and how many of a particular procedure the surgeon has performed successfully. There’s no agreed-upon number, but within reason, the more, the better, she says.

Experts emphasize that patients should search for the best surgeon, not just the one who uses a robot.

Searching for an Oncology Surgeon

When the Americans with Disabilities Act (ADA) was passed in 1990, cancer survivors were relieved, believing the legislation would protect them from workplace discrimination, says Barbara Hoffman, a lawyer and instructor at Rutgers School of Law in Newark, N.J.

But that didn’t always happen. Some federal courts balked at applying the ADA to cancer survivors, Hoffman says, adding: “It was a Catch-22.” On one hand, courts sometimes said survivors didn’t have a substantial, activity-limiting impairment because they were able to work. On the other hand, some courts said that if survivors couldn’t perform certain duties of their job, they weren’t qualified to hold the job. Either way, many claimants’ cases were dismissed before making it to trial.

Then, in 2008, Congress passed the ADA Amendments Act (ADAAA), intended to broaden the definition of “disability.” Among its relevant provisions was that employees taking maintenance medication could still be considered disabled, even if the medication helped their impairment. And employees in remission from cancer could also be defined as disabled, so long as the condition, if active, would be limiting.

Although it’s too soon to evaluate the amendment’s effectiveness, “We think it’s working” to expand access to the law’s protections, Hoffman says. Her analysis shows that the number of cancer-based claims under the ADA rose to 951 in 2011 from 707 in 2008. Moreover, “the number of cancer-based employment discrimination claims that have been resolved favorably for the plaintiff has nearly doubled” since the ADAAA passed, she says.

There have been attempts to expand access to the Family Medical Leave Act by lowering the number of employees an employer must have (currently 50), or by permitting people to take leave to care for siblings, grandparents, grandchildren or domestic partners under certain circumstances. (Right now caregivers are eligible for the leave only to help a child, spouse or parent with a serious health condition.) That would also expand the protected caregiver ranks for cancer patients. So far, none has been successful, says Joanna Fawzy Morales, a cancer-rights attorney and CEO of Triage Cancer, a nonprofit organization offering education and resources on cancer survivorship issues.

In addition, some states have tried to pass requirements that certain employers provide paid sick leave. No federal law requires it, and only Connecticut and a handful of localities—including San Francisco, Seattle and, most recently, Portland, Ore.&mdash;have their own laws guaranteeing paid leave.

There are legal protections in place for survivors in the workforce.

Protections in Place

	High school math teacher Mark Nelson never questioned whether he would work after cancer. After receiving a diagnosis of colon cancer in 2011, Nelson had surgery in June and started chemotherapy just two weeks before the school year began in his hometown of Mondovi, Wis. He had a round of chemotherapy on Wednesday afternoons and taught during the rest of the week using a portable infusion pump. Nelson, now 59, says he needed his job for the paycheck and health insurance. But it went beyond that. “Teaching the kids was saving me,” he says.

	Nelson was on a half-day schedule during treatment—the result of a declining student population and budget cuts&mdash;but now teaches six periods a day, sometimes from a chair, because of neuropathy.

	While he’d like to work more hours, he says the shorter day helps him manage treatment-related fatigue. A former basketball coach at his school, Nelson is looking forward to regaining enough energy to attend night games. “I want to slowly build up to that,” he says.

	An estimated 4.8 million people of working age are survivors of cancer. Most successfully return to work after treatment, but some do not. Even those who do go back to work after, or even during treatment, can face a variety of challenges stemming from the physical and psychological effects of their disease and treatment. The good news is that experts say it’s often possible to overcome those challenges, with some planning and employer support.

	The nonprofit Cancer and Careers and the market research firm Harris Interactive recently released the results of a poll of 400 people working before and after cancer treatment on what motivated them to continue working. Nearly half (48 percent) said they continued working because they wanted to keep things as normal as possible, and more than one-third (38 percent) said that they wanted to feel productive.

	“Most people would say that their greatest source of identity is their job,” says Cathy Bradley, professor and chair of Virginia Commonwealth University’s Department of Healthcare Policy and Research in Richmond, Va. “It provides self-esteem, a distraction and a social outlet.”

	Most people would say that their greatest source of identity is their job.

	Not everyone returns to work after treatment. Some can’t, while others don’t have to, or decide they have other priorities, says Michael Feuerstein, a professor of medical and clinical psychology at the Uniformed Services University of the Health Sciences in Bethesda, Md., and a survivor of brain cancer.

	Residual symptoms can make returning to the workplace, and staying there, a challenge. A study published this year in the 

 found that patients whose cancer was non-metastatic were less likely than those who were less affected to be working at least six months post-diagnosis if their symptoms interfered with work at least moderately. And those who can’t work at all may merely represent just “the tip of the iceberg,” with many others working part-time when they’d rather be working full-time, or who can’t work at their previous level or rate, says Amye Tevaarwerk, an assistant professor of hematology/oncology at the University of Wisconsin-Madison and a lead author of the study.

	Some late effects of treatment are physical and can be long-standing or permanent. Lymphedema, for example, might not occur until years after treatment, yet it can be a challenge for people whose jobs require physical activity, such as heavy lifting. A 2010 study of patients with newly diagnosed breast and prostate cancer, co-authored by Bradley and published in the 

, found that about 36 percent of women and 17 percent of men reported a physical disability 18 months after diagnosis.

	Fatigue is also a problem for many survivors, and sleep often isn’t a solution. The insurance company Unum offers practical applications to employers, such as workstation flexibility, time and space for breaks, and the ability to plan productive work to avoid the cycles of fatigue. Research also suggests physical activity can help, says Patricia Ganz, a medical oncologist and director of the patients and survivors program at the Jonsson Comprehensive Cancer Center at the University of California, Los Angeles. She co-authored a 2012 study that found Iyengar yoga improved fatigue in survivors of breast cancer.

	Chemotherapy and radiation also can cause memory and cognition problems that can make functioning at work tough for some people. In Bradley’s study, even 18 months after diagnosis, 22 percent of the women and 7 percent of the men reported cognitive disability—and they were more likely to leave the workforce as a result. Ganz is now leading a randomized trial examining whether homework assignments and 10 hours of group sessions can improve attention, memory, multitasking and encoding in survivors of breast cancer.

[Infographic: See how cancer survivors are changing the face of the workforce]

	Nelson says being direct and honest with his supervisors has been key. When he found out that he was scheduled to attend an all-day seated in-service meeting not long after treatment, he told his superintendent that it wouldn’t be possible. “As long as I was upfront, they worked with me,” he says. Disclosure of a disability is required of workers who need a reasonable accommodation under the Americans with Disabilities Act (ADA) or disclosure of an illness for those who need to take unpaid, job-protected time off under the Family Medical Leave Act (FMLA).

	We hear that people don’t want to be labeled as “cancer girl” or “cancer boy.” They want work to be a place of respite.

	With co-workers, the question of how much detail to disclose can be trickier. “We hear that people don’t want to be labeled as ‘cancer girl’ or ‘cancer boy,’” says Kate Sweeney, co-founder of Cancer and Careers and executive director of the Cosmetic Executive Women Foundation. “They want work to be a place of respite.” She advises people to be prepared for the inevitable “How are you?” with a quick answer and a transition into another subject.

	“I’ve always been pretty good at gauging when you can have a conversation,” says Mitria Di Giacomo, a survivor of breast cancer who owns her own marketing consultancy in New York. “If I felt it would be a detriment or would be perceived badly, I wouldn’t talk about it.” She used a career coach through Cancer and Careers. Survivors “need guidelines,” she says. “It’s a whole new situation.”

	Some want—or need&mdash;to more fully disclose what’s going on. Nelson says he told his students details about his surgery and his need for a colostomy. “I had to tell them,” he says. “I told them if I passed gas they’d better laugh because I would.”

	Not everyone finds supportive supervisors and colleagues, however. A recent survey of adults living with cancer in the U.K. found that 37 percent of respondents who returned to work after treatment experienced some type of discrimination.

	“We see a number of cases involving outright employment discrimination or suspected discrimination,” says Shawn Kravich, associate director at the Cancer Legal Resource Center, a joint program of the Disability Rights Legal Center and Loyola Law School in Los Angeles. Some employers are blatant in discriminating—Kravich says one of his clients was fired via voicemail specifically due to cancer&mdash;but usually the discrimination is more subtle. “People often say, ‘I had to take time off from work. I’m returning. And even though I’m working hard, my employer keeps writing me up for job performance, even though I feel like I’m doing my job the way I was always doing it,’” he says.

	Earlier this year, Lamar Dobbs was abruptly let go by the nursing home where he had worked for nearly three years. The 56-year-old certified nursing assistant from Wilmington, Del., says he was initially treated well by his supervisors after returning to work last fall from a 12-week medical leave following surgical removal of a cancerous kidney. His bosses switched his duties from the more physical nursing tasks to a desk job, making it easier for him to recover.

	A few months later, Dobbs developed a hernia, which was a complication of the surgery, requiring another operation. After presenting the necessary paperwork to the director of nursing, Dobbs recalls being told not to worry about his employment situation and to instead focus on his health. But when he returned to work following the hernia repair, he says his supervisor told him that he no longer had a job. Though the employer’s official reason for termination was that Dobbs had exhausted his medical leave, Dobbs isn’t satisfied with the explanation.

	Now Dobbs receives unemployment benefits and is working on getting better—he is also being treated for prostate cancer&mdash;before he looks for work again. “It really hurts a lot,” he says of the circumstances surrounding his termination. “I can’t understand it.”

[Learn what legal protections are in place for survivors who work]

	The ADA requires private employers with at least 15 employees to make “reasonable” workplace accommodations for employees. The definition of reasonable is very specific to the individual and his or her job responsibilities, says Joanna Fawzy Morales, a cancer-rights attorney and CEO of Triage Cancer, a nonprofit organization offering education and resources on cancer survivorship issues. Telecommuting may be a perfectly reasonable accommodation for an office worker, for example, but maybe not be for an airline pilot.

	Changes to the work space, technology and company policy, such as working from home or using a chair at a retail checkout counter, can be reasonable accommodations if they’re conducive to the job, Morales says. So is more time off, or a job transfer—such as a teacher with a compromised immune system shifting to an administrative role&mdash;if there’s a vacancy, she says. (Check potential accommodations at 

, the Department of Labor’s Job Accommodation Network, for more information). The protection doesn’t apply, though, if a worker is simply no longer able to perform the essential functions of the job.

	One week after having surgery on his brain tumor, Feuerstein returned to work, where he immediately suspected his employment situation had changed. He says a grant he had received before his diagnosis was returned to the source because no one could figure out to whom the money had been allocated. His employer’s attempt to accommodate his illness and recovery involved someone taking notes for him at conferences, which he didn’t need. So Feuerstein filed a claim under the ADA but later dropped it when his situation improved.

	Feuerstein co-authored a study in 2007 that found that people with cancer-related disputes were more likely than those with impairments, such as cardiovascular or neurological problems, to claim under the ADA that they’d received differential treatment or lost their job. Even with the higher profile of cancer survivors, “people are still scared of cancer,” Feuerstein says. He also acknowledges that businesses have legitimate concerns, such as when long-term or late effects of treatment affect a survivor’s productivity.

	If a worker is temporarily unable to perform a job, the FMLA permits up to 12 workweeks of unpaid leave per 12-month period—so long as the private employer employs 50 or more people. Medical certification must be supplied if an employer requests it.

	Debra Wolf, a senior attorney at LegalHealth, a program of the New York Legal Assistance Group, advises people seeking accommodations to start with the human resources or employee benefits department, not a direct supervisor. She says workers should put everything in writing. They should also include a letter from their physician explaining that they’ve reviewed the request for an accommodation, that it’s medically necessary and that the worker is able to perform the essential functions of their job. She also urges people to understand their state laws, which may go beyond provisions in the ADA.

	Many survivors find that they have a different perspective on work after cancer. Di Giacomo’s 2007 breast cancer diagnosis came in the middle of a career transition: She was trying to figure out whether to go back to a corporate job or start her own business. She didn’t work for a few weeks while she researched the disease and prepared for surgery. But after the surgery, she picked up some freelance public relations work, committing for a four-month stretch at three days a week.

	While still feeling the effects of chemotherapy, Di Giacomo discussed a job with a potential employer. When the potential employer said, “This is a 24/7 commitment,” she knew it probably wasn’t for her. Now she’s thrilled to be working for herself, on her own terms. “I’ve always enjoyed work. Now I think it’s important, but I’m not interested in being at my desk for 15 hours,” she says. “Before, I didn’t realize that life could be fragile.”

After cancer, dealing with employment issues is all in a day's work.

Task Force: Tackling Work After a Cancer Diagnosis

Nancy Abramson had already been through a lot: breast cancer in 2000 that required a mastectomy, chemotherapy, and radiation; and then reconstruction in 2001.

She was just getting back to her routine when she noticed that a bracelet and ring she used to wear no longer fit. The swelling, which also involved her arm, was accompanied by a feeling of heaviness. The diagnosis: lymphedema, a backup of lymphatic fluid resulting from damage to lymph nodes.

While “primary” lymphedema can occur spontaneously anywhere in the body at any time, “secondary” lymphedema is sparked by trauma, including radiation or surgical removal of lymph nodes—both common treatments for a number of cancers, including head and neck, prostate, testicular, cervical, breast, and melanoma.

Breast cancer patients such as Abramson, 59, are particularly vulnerable to lymphedema in the arm because they had axillary node dissection, the removal of some or all of the lymph nodes in the underarm area to determine the extent to which the cancer has moved outside the breast. This information helps determine staging of the cancer and could impact treatment choices. Performing axillary dissection on all women meant that those whose nodes were clear of cancer were unnecessarily put at risk for lymphedema.

Now the standard of care for breast cancer, sentinel node biopsy removes only the node or nodes closest to the breast. Only if the sentinel node contains cancer cells does the surgeon remove remaining nodes in the underarm, and if the sentinel node is negative, studies have shown better than a 90 percent chance of no further nodes being involved.

According to a 2007 study that enrolled close to 1,000 women, between 3 and 5 percent of patients who have a sentinel node biopsy will get lymphedema compared with 16 to 27 percent of those who have full axillary dissection. The wide variation in incidence is due to multiple factors, including the number of nodes removed, how researchers define lymphedema, and measurement difficulties. Radiation to the breast can, in some cases, increase the possibility of lymphedema because of injury to the nodes and lymphatic channels.

But whether lymphedema arises quickly or years after treatment, it can be managed with conventional techniques, plus some new ones.

The lymph system absorbs fluid from tissues throughout the body and shunts it into increasingly larger vessels, explains Nicole Stout Gergich, PT, a physical therapist and certified lymphedema therapist at the Breast Care Center at the National Naval Medical Center in Bethesda, Maryland.

This protein-rich fluid passes through lymph nodes, which remove impurities, and is eventually flushed from the body. If the lymph nodes are removed or damaged, the fluid backs up.

Stout Gergich explains that because the lymph fluid isn’t taking away bacteria and other infection-causing elements from the tissue, those areas where the fluid gets congested are prone to infection called cellulitis that, if not controlled, can require hospitalization for intravenous antibiotics.

The onset of lymphedema is unpredictable, Stout Gergich says. In some cancer patients it appears shortly after surgery; in others undergoing the same surgery, not at all.

Stout Gergich says that historical research has shown that with breast cancer, the majority of people who are going to get lymphedema will get it in the first three years. “But in some people 20 years out, suddenly they get an infection and develop lymphedema for the first time.”

Though awareness among physicians has grown to the extent that some cancer centers have lymphedema specialists, patients in the past were often met with clueless stares from their physicians when they complained of swelling.

Glenn Lang underwent surgery and radiation for testicular cancer in 1963 and developed lymphedema so severe that he had to have special trousers made to accommodate his swollen leg. His physician suggested a stocking, which didn’t help. Lang, a construction worker, ultimately had to go on disability.

More than 30 years later, a colleague referred Lang to a therapist near his Michigan home who specialized in working with breast cancer survivors. She was able to reduce the swelling significantly, allowing Lang to resume many normal activities.

This doesn’t mean Lang or anyone with lymphedema can be cured—but lymphedema can be treated and managed even years after onset by using complete decongestive therapy (CDT), a labor-intensive, time-consuming, multi-faceted process, explains Saskia Thiadens, RN, executive director of the National Lymphedema Network, a nonprofit advocacy group.

The process includes a number of steps, beginning with manual lymphatic drainage, a form of massage performed by a certified therapist that stimulates the lymphatic system to move lymph fluid and bring down swelling. The second step is precise bandaging designed to encourage the continued flow of lymph. While effective, the bandaging during initial treatment is difficult both physically and emotionally. Abramson recalls spending a Thanksgiving  holiday watching other people prepare the meal she was used to making while her arm and hand were swaddled in bandages. “It was very frustrating,” she says.

People with lymphedema have an increased risk of infection ... I don't want my patients to be paranoid, but I want them to be prudent.

Once the swelling is under control, patients keep it from returning by wearing a custom-made compression garment during the majority of the day while bandaging at night. 

Sequential pumps, which use a sleeve that has chambers that fill sequentially up the limb to move lymph fluid, have, for the most part, been replaced by CDT as the primary treatment to reduce swelling, says Thiadens, who adds that the pumps can still be helpful when used in conjunction with other modalities and if used under close supervision of a therapist. 

New York City resident Linda David, who developed lymphedema in her left leg a few years after treatment for cervical cancer in 1984, uses compression stockings and nightly wrapping to control her condition between two-week intensive physical therapy sessions a few times a year. 

Because any skin problem can result in infection, therapists recommend gloves for gardening, care when using any sharp object, immediate application of antibiotic for any skin break, and insect spray when outdoors. 

“People with lymphedema have an increased risk of infection,” explains Leslie J. Waltke, PT, regional cancer rehabilitation coordinator for Aurora Health Care at Aurora Sinai Medical Center in Milwaukee. “If a normal human armpit has 35 or 40 nodes and you’ve lost half, a little teeny bug or bacterium that would have been destroyed by an intact lymphatic system can every once in a while cause a problem. I don’t want my patients to be paranoid, but I want them to be prudent.”

Cancer patients who developed lymphedema decades ago were warned to avoid using the extremity, while today they are encouraged to exercise. Indeed, today numerous clinical trials are exploring effectiveness of exercises such as swimming.

“Exercise can create a pumping effect on the lymph system, which stimulates the lymphatic flow,” says Waltke, pointing to studies presented at the National Lymphedema Network’s recent international conference, where researchers reported that exercise, even high-intensity weight training, doesn’t exacerbate the condition, but may contribute to weight loss—important because weight gain is emerging as a surprisingly significant factor in developing lymphedema, says Waltke.

As for intensity, Stout Gergich says that just as those who have had a coronary bypass are told to exercise appropriately, it’s no different with lymphedema. “You can weight lift, rock climb, kayak—you can do whatever as long as you have consideration for your limbs.” That means self-monitoring for signs that lymphedema might be looming, such as swelling, a feeling of fullness, tingling, or pain in the affected area.

Abramson takes part in twice-weekly classes of the Lebed Method, a therapeutic exercise program incorporating movement and dance, developed by breast cancer survivor Sherry Lebed Davis, who also has lymphedema.

The movement in the Lebed Method program is structured to stimulate lymphatic flow. Developed with her two brothers, who are physicians, the program is now affiliated with numerous cancer centers across the country.

Lebed Davis encourages people not to be afraid of lymphedema; there may not be a cure, but that isn’t reason for despair, she says. “I had it in my arm, my chest, my back—but if you saw me now, you wouldn’t know it.”

She participates in many of the activities she did before lymphedema, including golf, but wears a compression sleeve on her arm and hand. She is constantly watching for signs that she needs to stop an activity. “So sometimes I can do all 18 holes, and sometimes it’s just nine. I always say: You don’t have to give up your life, you just need to know how to manage it.”

To locate a therapist trained in complete decongestive therapy, go to the National Lymphedema Network at 

Controlling lymphedema with the old and the new.

Downsizing Swollen Limbs

Funding for lymphedema research is desperately needed, says Nicole Stout Gergich, PT, a physical therapist and certified lymphedema therapist at the Breast Care Center at the National Naval Medical Center in Bethesda, Maryland.

That need includes getting a fuller understanding of the fundamental nature of the lymph system.

Unlike the venous system, which circulates blood throughout the body, lymphatic vessels can’t regenerate; some growth factors are being studied to see if they can help replenish the damaged system. The exact reason why protein congestion in tissue sets off inflammation is also understudied, says Stout Gergich.

In addition, there’s a lot to be discovered about risk factors. Some people go years without the condition before it comes on suddenly, even after doing something they’ve done many times before, such as flying—so what changed? Some patients have many lymph nodes removed and undergo extensive radiation with no problems at all. Is it because they started out with a more robust lymphatic system to begin with? And how big a role does obesity play?

Saskia Thiadens, RN, executive director of the National Lymphedema Network, says that because earlier diagnosis means easier treatment, there’s a great deal of research interest in finding preclinical signs of lymphedema.

Stout Gergich was first author of a study published in April in Cancer, which found that taking preoperative baseline measurements (using infrared light beams to measure limb volume) in breast cancer patients allowed doctors to detect lymphedema after surgery and before any symptoms appeared. That allowed patients to be treated quickly with compression garments rather than intense bandaging and manual lymph drainage. “I really stand on the soapbox of early detection and early treatment,” says Stout Gergich.

Meantime, Maureen Helgren, PhD, PT, an associate professor of physical therapy at Quinnipiac University in Hamden, Connecticut, is hoping to start recruiting patients in 2009 for a study to investigate whether providing women with appropriate information about symptoms and preventive exercises, including the Lebed Method (

), can help limit the incidence and severity of lymphedema.

Funding for lymphedema research is desperately needed. 

Lymphedema Needs Research, Funding

Ann Stephens knew that colon cancer ran in her family, but it was the diagnosis of colon cancer for her beloved cocker spaniel, Cashew, that made Stephens realize the importance of early detection.  

She was diagnosed with colorectal cancer after her first colonoscopy in 2005, which found 19 polyps — one of them malignant. Surgery and chemotherapy sent it into remission. But for the now 57-year-old resident of Issaquah, Wash., there was an unanswered question: Did she have a hereditary form of the disease, one caused by a mutation inherited from a parent at the moment of her conception? The prospect of getting a test to find out was frightening. “I was really scared,” she says, “even though at that point I knew I had cancer, and I had all these aunts and uncles with cancer, so there was obviously a familial connection. But if I knew I was genetically defective, what would that mean?” 

As it turned out,  testing showed that Stephens had a mutation in a gene called APC that normally represses tumor growth. A mutation in that gene may effectively take the foot off the brakes of cell division. Those rapidly dividing cells become polyps, which in turn can become cancerous.

Some people with these mutations have a syndrome called familial adenomatous polyposis (FAP), which is characterized by thousands of polyps in the colon and rectum at a young age. But Stephens had the milder form of that syndrome, attenuated FAP (AFAP), characterized by an older age of onset and fewer polyps.

That knowledge didn’t change her course of treatment, but it did have some implications for her follow-up care. And the test results provided crucial information to her family; her genetic counselor sent a letter to her two brothers and nine first cousins informing them that a mutation had been detected so that they could decide whether to get screened or be tested themselves. 

“Every single one of them got a colonoscopy, and as a result, a few of them had genetic testing themselves,” she says. “I’m glad I did it.”

All cancers are caused by some kind of mutation — a change in a gene, which is a tiny piece of the very large instruction manual for building and operating our bodies. With cancer, that mutation somehow allows cells to grow out of control, past their usual lifespan. In the case of hereditary cancers, which account for only a small portion of all cancers, that harmful mutation is in a gene passed on from parent to child. (By contrast, an acquired mutation happens after conception occurs and isn’t passed on.)

The field of identifying these specific harmful mutations is relatively new — the first tumor suppressor gene, RB1, was identified in 1986. Mutations in that gene are responsible for hereditary retinoblastoma, a rare childhood eye tumor. 

Because of the greater reach of the disease, the discovery in the mid-1990s of two genes associated with hereditary breast cancer, BRCA1 and BRCA2, had far wider implications.

Now, there are at least glimpses of the hereditary factors involved in other cancers, including colorectal, ovarian, melanoma, prostate, gastric and endocrine. But only in a handful of cancers have mutations been pinpointed and proved to be clinically useful for patients and their families. There are potential new mutations discovered all the time, but not all of them are ready for prime time. 

“We can identify genes, but what that means over time is what needs to be elaborated upon,” says Robert Resta, MS, CGC, senior clinical specialist at the Hereditary Cancer Clinic at the Swedish Medical Center in Seattle. “The laboratory knowledge often outstrips the clinical knowledge.” And there are likely to be many mutations discovered in the future that raise the risk of cancer only marginally. 

“If for each one of these individual common genetic variants, the risk increases just a little bit, what do you do?” asks David Goldgar, PhD, a professor at the University of Utah School of Medicine. “Would you want to spend a lot of money to find things that will likely only give you some information about slightly increased — or decreased &mdash; risk?”

It’s also important to know that even these inherited mutations shown to have a definite link to cancer do not guarantee that someone carrying them will get the disease. “What we’re talking about here is susceptibility, not destiny,” says Mary McMaster, MD, of the National Cancer Institute’s Division of Cancer Epidemiology and Genetics. 

The odds of developing cancer depend on the mutation. Some, like the changes that produce full-blown FAP, nearly guarantee it. Others raise the risk of cancer significantly enough to consider measures including increased monitoring, prevention drugs such as tamoxifen (Nolvadex), and surgery. Some others may raise the risk by a small enough degree to prompt people into taking lifestyle measures that may prevent cancer.

Further complicating the hereditary cancer picture is that the risk isn’t uniform; some families with BRCA mutations see far greater incidence of breast cancer than others, for example. “Although these genes have definitely been shown to increase risk, that risk can be further modified by other genes we may not know about,” says McMaster. One candidate: a gene called HMMR. Mutations in this gene may interact with BRCA1 and BRCA2 to alter the odds of getting breast cancer. Learning more about those modifier genes, which are also thought to be at work in Lynch syndrome (a rare syndrome that predisposes people to colorectal and several other kinds of cancer) and probably other cancers, may eventually help stratify the risk among carriers —  someone with a 50 percent chance of cancer may opt for a different strategy than someone with an 85 percent risk. 

Other factors like age, obesity and sun exposure alter the risk of cancer, too. “It’s a very complex interplay,” says McMaster. “It’s easy to fall into the trap that the presence of one of these susceptibility genes means a patient is doomed to get the cancer.” 

There are also plenty of cancers for which it’s known that there’s some kind of genetic component, but no definitive culprit. Identifying specific factors involved in prostate cancer, for example, has been extraordinarily challenging, says McMaster, even though family history is the strongest risk factor for the disease. A handful of potential genes have been identified, yet none is strongly enough associated with the disease to be tested for. (The exceptions are the BRCA1 and BRCA2 genes, which raise the risk of prostate cancer enough so that men with breast and ovarian cancers in their family should be tested to see whether they are also carrying the mutations.) Testicular cancer, too, has a strong familial component; brothers of those with the disease are eight to 10 times more likely to develop it, and sons of those with the disease are four times as likely. But as of yet, no mutation has been identified. 

Given the complexity of the factors behind hereditary cancers, what good does it do to be tested, when a test is available? Who should consider testing for an inherited mutation, and how should they decide?

Two kinds of people might opt to peek into their genes: someone who has cancer and whose doctor suspects it might have a hereditary component, or someone who is cancer-free but worried about his or her risk because of a family history. For survivors, getting tested depends on whether the characteristics of the case suggest that there’s some familial link. In some cases that’s obvious; people with FAP, for example, have many more polyps at a much younger age than people with other forms of the disease. 

In most cases, though, the process begins with a family history (see sidebar, next page). A genetic counselor will make a pedigree of the patient, noting the cancer cases in his or her family and at what age they occurred. (The closer the affected relatives are to the survivor, the more suspicious.) Some ethnic groups are also predisposed to certain hereditary cancers; Ashkenazi Jews are more likely to have harmful BRCA1 and BRCA2 mutations, and are also at higher risk of colon cancer, so they may be more likely to be referred for counseling and possible testing. 

In Stephens’ case, it was her age that raised a red flag, says Anthony Back, MD, her oncologist at the Seattle Cancer Care Alliance and the University of Washington. “She was in her early 50s, which is young to have primary colon cancer — the usual age is 60 or 65,” he says. In addition to patients with younger-than-average onset or a family history of the disease, he may refer people with children for testing because of the implications for them if there is a mutation in the family. 

Keep in mind that most cancers are not hereditary. That said, if you think you need genetic counseling, speak up. “From a patient standpoint, the key is to learn your family history and make sure your doctor hears you,” says Lisa Boardman, MD, assistant professor of medicine at the Mayo Clinic College of Medicine and a consultant in the Division of Gastroenterology and Hepatology.

A key question to ask your doctor, a genetic counselor and, ultimately, yourself is why you want to get tested. It may seem obvious: If you can pinpoint the precise origin of the cancer in your genetic code, why not know it? It’s not a slam-dunk, though. The knowledge may help patients and their families, or it might cause unnecessary fear, and the same knowledge can have very different effects on members of the same family, depending on their individual outlook. 

Here are some questions a cancer survivor should ask a genetic counselor.

You should know specifically what is being tested for and what it can and cannot tell you about the genetic components of your cancer. What are the odds that the results won’t be conclusive, and where do we go from there? Will the test tell me anything that I couldn’t find out from a detailed family history?

The idea of tailoring drug regimens to cancer caused by a specific mutation is a logical one, and something that researchers are working on, but it’s not yet in practice. “That’s the way it will go, but it isn’t there yet,” says Tuya Pal, MD, a clinical geneticist at the Moffitt Cancer Center and Research Institute in Tampa, Fla. There have been some suggestions that hereditary colon cancer and hereditary breast cancer have treatment differences; however, it is not currently standard of care to treat those with hereditary cancer differently. Trials are under way in the United Kingdom to test whether women with BRCA1 or BRCA2 mutations respond better to carboplatin, a chemotherapy drug not usually used against breast cancer, than to traditional chemotherapy (docetaxel). 

Discovering that cancer is caused by a specific mutation is more likely to affect surgical decisions. Women with BRCA1 and BRCA2 mutations are more likely to have a second cancer in the opposite breast, which means many opt to have a bilateral mastectomy. And some colo&shy;rectal cancer patients with mutations that increase the risk of more polyps may ultimately decide to have the colon removed.

Because the BRCA1 and BRCA2 genes raise the chances of cancer in the opposite breast and of ovarian cancer, women who don’t have those organs removed may get additional follow-up — more frequent mammograms, or more sensitive imaging tests like MRIs. Ovarian cancer screening, unfortunately, is less advanced; neither transvaginal ultrasound nor the CA-125 blood test have been shown to find cancer early enough to make a difference in survival. “Right now I tell women there’s not yet evidence that screening helps, but given the high risk of ovarian cancer in mutation carriers, we and others recommend a transvaginal ultrasound and a CA-125 every six months,” says Karen Lu, MD, co-director for clinical cancer genetics and director of the high-risk ovarian cancer screening clinic at the University of Texas M.D. Anderson Cancer Center in Houston. 

Because some genes put people at risk for more than one type of cancer, a positive mutation may prompt screening for other diseases. For example, knowing that she has a mutation in the APC gene, Stephens will have more frequent colonoscopies as well as monitoring for thyroid cancer. People with Lynch syndrome are more likely to get cancers of the endometrium, ovaries, stomach, small intestine, pancreas, kidney and urinary tract. Those cancers that can be caught early through screening may be more frequently tested for — but not all can be, so there’s a degree of worry associated with having that information. 

When Rena Henderson, a 58-year-old from Monterey, Calif., was tested for the BRCA mutations three years ago, it wasn’t for her own sake. Her own breast cancer was diagnosed and treated more than two decades earlier. “I had 22 positive nodes,” she says. “I had everything: a mastectomy, chemo once a week for a year, radiation.” She’s had no recurrences since then, but she does have a 23-year-old daughter, Karen. Rena’s own test came back positive for a deleterious mutation in the BRCA2 gene, which meant her daughter has a 50 percent chance of having the same mutation. Henderson says she could accept the information for herself, but she was devastated at what it could mean for her daughter. 

Family members who find they are carriers may have a range of options — or, depending on the cancer, very few. In some cases, the only options may be radical. Inheriting a mutation in a gene called CDH1 makes stomach cancer an almost certainty, and the only real way to prevent the disease is to have the organ removed. Decisions about removing the breasts, ovaries, colon or other parts of the body in the absence of disease &mdash; and with no guarantee that it will ever come &mdash; are tough ones.

Another catch is that some insurance carriers may not cover genetic tests for unaffected relatives, which can run into the hundreds or thousands of dollars. Testing relatives is often cheaper than testing the original patient, however, since the lab needs to test only for the specific mutation that has already been shown to have caused the cancer in the family. “For the purposes of genetic testing, physicians should focus on the family member with cancer,” says Lu. “Once you’ve identified the mistake, then all your relatives just have to test for that one mutation.”

Although it sounds like a scary proposition to be a healthy person walking around with a gene that confers risk, don’t forget: Testing can also allay fears. If a relative doesn’t have the responsible mutation, that person’s risk, theoretically, returns to the average in the population. That’s one of the factors that went into Karen Henderson’s decision to have the test when she turns 25 — the earliest recommended age, since breast cancer in women younger than that probably isn’t caused by mutations in BRCA1 and BRCA2. “At first I was fairly reluctant,” she says. “Why would you want to know you have something wrong with you and live your life in fear? I didn’t want to be constantly anticipating cancer,” which has already loomed over her life. “My first memory of my mother is of her being in the hospital and me not understanding exactly what was going on,” she says. “I was always pretty much aware of it.”

The genetic counselor allayed her concerns, she says. “I saw that this was just a responsible, healthy way to take more control of my life, and just another step in early prevention,” she says. “If I have it, I have a 50 to 80 percent chance of breast cancer, but if I don’t, I have the same risk as any American woman.” 

And her mom, who would like more than anything to spare her daughter the cancer she’s already faced, is happy that knowledge about this particular hereditary cancer is there to be learned.

“I feel like I did the right thing,” says Rena. 

It's not a slam dunk, though. The knowledge may help patients and their families, or it might cause unnecessary fear.

Genetic testing for yourself & family members can both create & alleviate fear.