It’s only fair. After all, we asked you, the reader, to boil your complicated cancer and survivorship experiences down into the very short Japanese poetry form known as haiku. So we figured we should offer up some poetry as well.

Typically in this space you see an editorial written by one member of the 

 team on behalf of all the other people who lend their time and talents to the magazine. But in this issue we’ve brought you a multiplicity of staff voices and viewpoints, telling you — in our own attempts at haiku &mdash; how we view our work and our relationship with cancer patients and survivors.

Every one of us at CURE Media Group (which includes the staff of both 

 magazines) knows it is a privilege to bear witness to the courage and pluck that people exhibit daily in the wake of a cancer diagnosis. Sharing your experience helps light the path for others. And so we humbly offer you our own poetry, along with this observation by American novelist and poet Robert Penn Warren: 

The poem is a little myth of man’s capacity of making life meaningful. And in the end, the poem is not a thing we see — it is, rather, a light by which we may see &mdash; and what we see is life.

Lacey Meyer, editorial assistant, on her research role at the magazines

Darlene Card, circulation assistant, on her daily interactions with readers

Kathy LaTour, editor-at-large and 21-year breast cancer survivor

Alexandra Hurd, events coordinator, on her work with patients and survivors at

Susan McClure, publisher and 10-year breast cancer survivor

Lena Huang, contributing editor, on her role editing food/nutrition features

assistant managing editor, on reading survivor essays and covering oncology meetings

Articles

Beginnings

Light by Which to See

 asked readers to express aspects of their cancer experience in the Japanese form of poetry known as haiku — or at least give it a good try!

On her mother’s battle with metastatic breast cancer

Patient family educator at Dana-Farber Cancer Institute

Physical therapist specializing in lymphedema treatment

Two-year inflammatory breast cancer survivor

Caregiver for a loved one with pancreatic cancer who died in 2007

Two-year metastatic breast cancer survivor

Voices

The statistics on prostate cancer are sobering: One in six American men will be diagnosed with the disease in their lifetime, and almost 30,000 die from it each year.

Nevertheless, there’s good news: A large percentage of prostate cancers may be preventable through the use of drugs such as finasteride and easy-to-implement lifestyle changes. There is also increasing evidence, some researchers say, that naturally occurring substances such as lycopene (which is found in tomato-based products), selenium and vitamin E may also play a role in reducing prostate cancer risk. 

While research hasn’t yet demonstrated the extent to which such preventive measures might actually reduce the disease’s death rate, such efforts do promise to spare an untold number of men the significant side effects that can accompany prostate cancer and its treatment.

“I am 95 percent confident that within the next one to five years we will be able to make tremendous evidence-based recommendations that men can either make a lifestyle change or take some kind of tablet or supplement that will drastically alter their risk of getting prostate cancer in their lifetime,” says Neil Fleshner, MD, MPH, who heads the division of urology for the University Health Network in Toronto.

Of all of the compounds being studied for prostate cancer prevention, finasteride — a drug initially developed to ease symptoms of benign prostatic hyperplasia &mdash; has shown the greatest efficacy, reducing risk by nearly 25 percent in the National Cancer Institute-sponsored Prostate Cancer Prevention Trial, a placebo-controlled, seven-year study involving 18,882 American men. In fact, the results of this landmark research were so overwhelmingly positive that the study was concluded early, notes Ian M. Thompson, MD, professor and chairman of the department of urology at the University of Texas Health Science Center School of Medicine in San Antonio, and lead author of a 2003 report on the study published in The New England Journal of Medicine.

Finasteride is an androgen suppressor, meaning it blocks an enzyme in the prostate that changes testosterone (an androgen) into a more powerful form called dihydrotestosterone, which is known to stimulate prostate cancer growth, explains Thompson. 

The drug is considered safe, with minimal side effects, but one of the results of the Prostate Cancer Prevention Trial was an increase in detection of higher-grade tumors among participants who were found to have cancer. An editorial that accompanied the 2003 study suggested that this finding should prevent finasteride from being marketed as a preventive measure for prostate cancer. But in the ensuing years, most researchers have concluded that the drug does not increase risk of higher-grade cancers, it just makes them easier to detect.

“One of the main views is that [the increase in higher-grade cancers] may be artificial,” says Yair Lotan, MD, assistant professor in the department of urology at the University of Texas Southwestern Medical Center in Dallas, and senior author of a detailed analysis of the trial findings published in the journal Cancer.

“If you shrink the prostate, which finasteride does, then you’re more likely to find even small amounts of high-grade cancer. It’s like finding a needle in a haystack. When you reduce the size of the haystack by half, finding the needle becomes much easier.”

Men most at risk of developing prostate cancer — those with a family history and African-American men, who have a much higher risk than white or Asian men &mdash; are likely to benefit the most from taking finasteride. But men who suffer from urinary problems because of an enlarged prostate should also discuss the drug with their physicians because of its prostate-shrinking properties, Thompson notes. “Those men will get twice the benefit,” he observes. “One, their urination will improve, and two, it will reduce their risk of prostate cancer.”

Dutasteride, a chemical cousin to finasteride, is also being assessed as a possible preventive for prostate cancer. A large phase 3 trial called REDUCE (Reduction by Dutasteride of Prostate Cancer Events) is looking at the effect of the drug in 8,250 patients between 50 and 75 years of age who have elevated levels of prostate-specific antigen, or PSA, a marker for prostate cancer, and who have a negative biopsy. 

A repeat biopsy will be performed in two to four years to determine the drug’s impact in preventing cancer, report Fleshner and Alexandre Zlotta, MD, PhD, in a recent overview of prostate cancer prevention in the journal Cancer.

Also under study is the drug toremifene, used to treat breast cancer. The drug, of a type known as a selective estrogen receptor modifier, is of interest to scientists because estrogens — a so-called female hormone that is also present in men &mdash; have been found in laboratory animals to cause prostate cancer. Research on toremifene and prostate cancer, however, is still in the relatively early stages.

A class of anti-inflammatory drugs known as COX-2 inhibitors represented another family of medication once considered for study in the prevention of prostate cancer. However, one major study in this area, involving 15,000 men, was derailed when the COX-2 inhibitor Vioxx (rofecoxib) was taken off the market due to health concerns. 

“Some people believe that inflammation plays a very important role in the formation of cancer, along with free radicals,” notes Lotan. “There was a strong [indication] for investigating these agents, but unfortunately all studies have been halted and there aren’t going to be any more that we can foresee.” 

Still promising are certain minerals and vitamins, such as selenium and vitamin E, which are being evaluated in a large, randomized trial known as SELECT (Selenium and Vitamin E Cancer Prevention Trial), funded by the National Cancer Institute.

Selenium, a mineral found in foods such as potatoes, whole-wheat bread and tuna, is important in cells’ defenses against oxidative stress. Vitamin E is an antioxidant that has been tentatively linked to prostate cancer prevention as a result of a Finnish trial that saw a one-third reduced chance of getting prostate cancer among men who took supplements of the nutrient.

As for lycopene, the red-orange carotene pigment found in tomatoes and other foods, any role in cancer prevention remains unclear, with some studies showing a benefit from high levels of consumption, and others finding no benefit. More carefully controlled studies of the issue are needed, many experts agree.

At the same time, lifestyle changes may be effective in reducing risk, notes Gordon Saxe, MD, PhD, assistant professor in the department of family and preventive medicine at the University of California, San Diego, who has been researching natural approaches to cancer prevention for more than 25 years.

Overall dietary patterns, in particular, are believed to play an important role in the development of prostate cancer. There is some evidence, Saxe notes, that a high intake of red meat and dairy can either promote the development of prostate cancer or accelerate its growth.

The potential influence of diet can best be illustrated by comparing rates of prostate cancer in China and the United States. The rate of prostate cancer is about 80 times greater in the U.S. than China, Saxe says, and one of the presumed reasons is the Asian diet, which tends to be higher in whole grains (such as unpolished rice) and vegetables, and lower in saturated fat. 

“Japan, like China, also has a lower rate of prostate cancer,” Saxe says. “When researchers looked at Japanese men who had migrated to the United States, it was found that their rates of prostate cancer had skyrocketed. They had rates of invasive prostate cancer four to nine times higher than men who still lived in Japan, and the rate was higher still in their offspring.”

Saxe notes that certain foods prevalent in Asian diets, such as tofu and green tea, are being closely examined to determine whether they contribute to the lower rates of prostate cancer among men in these countries. “When we investigated, we identified compounds in these foods that seem to affect the growth of prostate cancer cells in the laboratory,” he says.

According to Saxe, men who are most at risk of developing prostate cancer should consider a holistic approach to prevention, including a reduction in red meat and dairy intake; an increase in consumption of whole grains, vegetables, beans and fruit; regular exercise; and stress reduction via meditation, yoga or other approaches.

“Those who would benefit the most, in my opinion, are men already suffering from prostate cancer as well as those with a strong family history of prostate cancer, co-existing health problems such as diabetes or heart disease, or precancerous conditions such as prostatic intraepithelial neoplasia,” a noncancerous growth of cells lining the prostate gland’s internal and external surfaces, Saxe notes.

“African-American men would also benefit because they are more likely to be overweight when they are diagnosed, as well as have a higher grade of cancer,” he says. “African-American men are also more likely to have a relapse, so their prostate cancers tend to have a more aggressive course.”

As scientists learn more about how prostate cancer arises, even newer approaches may be on the horizon, Fleshner and Zlotta noted in their article in Cancer. Promising areas of investigation include the role played by obesity and insulin resistance (and the potential benefits of different diabetes drugs as preventive measures). Also of interest are the possible benefits of the cholesterol-control drugs known as statins, and the potential of developing a prostate cancer vaccine, based on what the researchers call “tantalizing data on novel viruses.”

While the array of promising approaches to preventing prostate cancer is growing, and several studies are in progress, researchers warn that men should be wary of commercial compounds touted for cancer prevention because most claims are, at this point, purely anecdotal.

“For many compounds, the science is rather sparse from a clinical standpoint,” says Lotan. “In regard to prostate cancer, large, controlled studies are required — there’s no real way around that. There must be more than just anecdotal evidence.”

If you shrink the prostate, which fiinasteride does, then you're more likely to find even small amounts of high-grade cancer. It's like finding a needle in a haystack. When you reduce the size of the haystack by half, finding the needle becomes much easier.

When researchers looked at Japanese men who had migrated to the United States, it was found that their rate of prostate cancer had skyrocketed.

In regard to prostate cancer, large, controlled studies are required - there's no real way around that. There must be more than just anecdotal evidence.

Prevention

Medicines, lifestyle changes and nutrients may help ward off cancer

Prostate Protection

After five years with brain cancer, Michael Feuerstein, 57, lives, sleeps and breathes for cancer survivorship. He is a survivor and he is a champion.

With advances in research and technology increasing the odds for beating cancer, greater emphasis on survivorship is needed in the medical community, says Feuerstein. Since his own 2002 diagnosis with a grade 3 anaplastic astrocytoma, the scientist for 29 years (with a PhD in clinical psychology) has made it his mission to  help heighten the quality of life for those who have had cancer.

“He really feels he was saved for a reason,’’ says his wife, Shelley, a school psychologist.

“Patients are living longer with cancer. I’m not an MD, but I am a scientist and I know a lot about this stuff, and I was scared,’’ Feuerstein says from his office at the Uniformed Services University of Health Sciences in Bethesda, Maryland. 

Feuerstein’s goal is to buffer the fear factor for survivors by helping doctors communicate better with patients and by helping those who are healing to take command of their disease.

Journal of Cancer Survivorship: Research and Practice

, published by Springer and aimed at health care professionals who need to understand lifestyle issues affecting patients from diagnosis into recovery. The quarterly journal, edited by Feuerstein, provides new information regarding the health, health care, and quality of life for survivors. It includes research papers, case studies and articles from leading experts worldwide. A complementary publication, 

, provides a summary of important research in the area. (The journal is available at www.springer.com/journal/11764 or by calling 212-460-1500.) 

Feuerstein and coauthor Patricia Findley wrote 

The Cancer Survivor’s Guide: The Essential Handbook to Life After Cancer 

(Marlowe and Company, $15.95). It’s filled with useful how-to’s for coping after beating the odds. 

His hard work and commitment is receiving notice. 

 received a favorable nod in a June 14 review in 

 story by health columnist Jane E. Brody about people thriving after cancer. 

Who better to be advocate and authority? As a research scientist and academic, Feuerstein actively studies behavioral medicine and health psychology. His expertise on the patient side gives balance. However, unlike his careful planning for life as a scientist, there was no time to prepare for life with a fatal disease.  

In May 2002, a “perfectly healthy” Type A Feuerstein was heading to lunch near his office at Georgetown University Medical Center when he stepped off the curb to cross busy Wisconsin Avenue in Washington, D.C. “As I looked to the left and right, I wound up getting a little dizzy. As I tried to run across the street, I found that I couldn’t really move my legs one in front of the other. It was a brief moment. After, I ran across wobbling, then hung on to a tree. The whole thing stabilized and I drove straight home.’’ 

Shelley’s gentle voice bristles when she recalls him driving home not knowing what was wrong.  “I don’t know what he was thinking,’’ she says. They have been married 35 years and have three children, Sara, 29; Andrew, 27; and Erica, 19. Their two grandkids, Sara’s children, were born after the cancer. The brood has been Feuerstein’s glue since the fateful street crossing.  

That afternoon he saw his internist, who referred him to a neurologist. An MRI revealed a tumor growing in the right cerebellum. Days later he was in surgery at Baltimore’s Johns Hopkins Hospital. 

 “I’ll never forget the radiologist’s words: ‘I don’t know what this is, but it looks pretty bad,’ ’’ Feuerstein says. He got his affairs in order, as he was advised, and began his battle. In spite of the prediction he would live only three months to a year, Feuerstein refused to die.

Shelley, 56, remembers the day of the procedure. She told neurosurgeon Howard Fine, MD, “Please be so careful because this is a very brilliant mind you’re going into.’’ She reassured the children, they comforted her, and the family waited. 

Youngest daughter Erica, now a college sophomore, was 14. “What sticks out in my mind the most was when Dad called from the doctor’s,” she says.

“His voice sounded so scared, and when I asked what was wrong he firmly asked to talk to Mom. It was all so unreal. … I kept most of my feelings inside. I would cry alone in my room so that my parents, especially my Mom, wouldn’t see me upset.’’ 

It wasn’t until Erica’s senior year, when she wrote an essay about her Dad’s experience, that Feuerstein understood the depth of Erica’s grief.  Her essay is printed in the survival guide under “Form a Support Team.’’ In that chapter, Feuerstein emphasizes the vital importance of support.

His own support came in the form of his colleague and friend Neil Grunberg, who now enjoys a close friendship with the family. Feuerstein had asked him to be available after surgery to explain the jargon to Shelley and the children.

Grunberg, a research scientist and professor specializing in animal model and behavioral medicine, works down the hall from Feuerstein’s university office and continues to lend support during the workday. 

“It’s important [for survivors] to have a supporter in the workplace—someone who will be honest and direct about how you’re coming across, and help you be self-aware,” Grunberg says. “After staff meetings, often Michael will ask, ‘Was I too blunt?’ ’’

Feuerstein appreciates Grunberg’s feedback. “Many times it’s not fair to burden family and friends. They get stressed, too.’’ He advises survivors to talk to other survivors and join support groups.  

As for his personal journey, it’s what fuels his cause. His survival story shows that optimism and not giving up are vital components to thriving with cancer, he says.

After radiation and two months into chemotherapy, things started looking better. “Each MRI, the tumor kept shrinking. After a while you couldn’t see it, which isn’t necessarily good news. It’s just not evident,’’ Feuerstein says. 

It wasn’t bad news, either. So he keeps thrusting his agenda forward. He is consumed with changing the health care culture so that communication between provider and survivor improves. 

Survivors should seek follow-up care without hesitation, he says. “Develop a health care team from diverse specialties and call on them when you need to. Don’t ignore symptoms. They probably don’t mean the tumor is back, but maybe you can get help for troublesome symptoms. Don’t feel like you’re being a hypochondriac, which is easy to do. ”

Realistic optimism also is a good measure, he says. “This is not just being positive or hopeful all the time, but realizing you might have old and new health problems and new forms of stress from time to time.”

Feuerstein realizes that his intensity about survivorship can seem overwhelming.

 “My doctor says I’m like an alcoholic working in a bar. I do think about this too much,’’ he muses.

It’s important for him to stay on top of his crusade, says Shelley. “I’m getting used to it. We just try to keep a sense of humor,’’ and when she can, she pulls him away from work to spend time with the grandchildren, who live nearby.

“The grandkids are a wonderful distraction,’’ she says.  

People

A brain tumor shifts a psychologist’s focus to helping survivors thrive.

A Mission of Empowerment

Five years cancer-free, and I’m feeling blissfully normal as I glance over the greeting cards at my neighborhood bookstore — until a 1950s illustration of a furrow-browed brunette clutching a handkerchief to her cheek catches my eye. “On the bright side,” the card reads, “she no longer had to worry about getting old.” Ignoring the italics, my heart races with fear as I think, “Cancer! What if my cancer returns and kills me before I’m old?” Then I laugh. “I get it, she’s already old!”

I wasn’t just being dense that day. Cancer changed me; I see things differently, and, although I’ve been what feels like my old self for years, I will probably always battle bouts of what I call post-cancer anxiety. 

Comprising a range of feelings from mild angst to intense dread, this fear of cancer returning can render survivors not just anxious, but hypersensitive, depressed and irritable. And it can show up without warning. 

“It’s the most common shared experience of cancer survivors across all diagnoses,” says clinician and researcher Karen Syrjala, PhD, director of biobehavioral sciences at the Fred Hutchinson Cancer Research Center in Seattle, who says that some cancer patients bounce back emotionally quite quickly, while others find their fear lasts longer. Her study of lymphoma and leukemia patients who underwent stem cell transplants, published in The Journal of the American Medical Association in 2004, found that this group of survivors had a particularly long emotional recovery, sometimes five years or longer, because the treatment is so aggressive. This information, she says, allows her to give them realistic expectations of emotional recovery.

 “If your house falls in an earthquake, your first task is to put it all together,” Syrjala says. “But it’s really the feelings of loss and worry afterwards that cause most of the trauma. Being unpredictable and uncontrollable — those are the two hardest aspects of anything stressful.”

Most survivors have recognizable triggers for the onset of anxiety — such as a new body ache, a celebrity’s death from cancer, cancer-related anniversaries, upcoming medical tests or even references to death in other contexts that can be extrapolated to cancer &mdash; like my greeting-card moment. The feelings can last from moments to days or months. But no matter those feelings’ intensity, duration, cause or moniker &mdash; fear of recurrence, adjustment disorder or, in extreme cases, post-traumatic stress disorder &mdash; virtually all cancer survivors experience anxiety. 

The good news is studies show that anxiety lessens with time, and we can learn our triggers and prepare to cope — and even use the anxiety to live a richer life. 

Amy Bartlett, 36, of Portland, Ore., steels herself for a PET scan, her first since completing treatment for non-Hodgkin’s lymphoma. Though not as severe as the anxiety that interrupted her sleep for months after radiation, her fear still comes in waves. “Your mind easily goes back to the place where you were when you had cancer. I’ll imagine having to call everyone again and tell them I have cancer, and then I’ll start crying. It’s like breaking a heart every time you tell someone.” 

As more survivors have begun to communicate with one another, especially online, a new lexicon has emerged. Indeed, the anxiety that precedes scans has acquired its own name: scanxiety. 

“That’s an appropriate description of an emotion we routinely encounter in our practice of oncology,” says Brian Lawenda, MD, clinical director of radiation oncology at Naval Medical Center San Diego. “Usually this classification of anxiety is secondary to a patient’s known medical condition, i.e., their history of cancer.” 

Lawenda says he sees anxiety in patients every day and attempts to assuage it. 

One such patient of Lawenda’s, 51-year-old Jacki Campbell of San Diego, was treated for a rare form of cancer, Burkitt’s lymphoma, three years ago, but she still gets CT scans two to four times a year. When medications and breathing exercises fail to calm her before upcoming scans, she visits Lawenda — this time for acupuncture.

During his residency in radiation oncology at Harvard Medical School, Lawenda says, he had little exposure to complementary therapies but heard anecdotally that patients were using acupuncture to help alleviate symptoms and side effects of cancer treatment, so he decided to study it. 

“I was convinced that it was merely acting as a placebo,” Lawenda says. “However, after I started integrating acupuncture into my practice, I found it extremely effective. Now I am convinced that the effects go much further than might be expected of a placebo.” 

Campbell started having acupuncture a year ago and noticed results the first day. “It really worked. I was so calm I went home and took a nap, and I’m not normally a napping person.”

Campbell sought help for her anxiety, but those who don’t may find that normal feelings of fear can overpower logic, sometimes resulting in unwise decisions, says David Spiegel, MD, director of Stanford University’s Psychosocial Treatment Laboratory. For example, Spiegel says that while most people hear the term “PSA” and think of the test to diagnose prostate cancer, he also uses it to refer to “prostate-specific anxiety.” Spiegel explains that some men are so anxious about cancer recurring that they choose aggressive surgery — with possible bad consequences such as impotence or incontinence &mdash; just to take care of their anxiety. 

Literature on fear of recurrence dates back to 1981, when psychologist and Harvard University professor Gerald P. Koocher, PhD, co-authored Damocles Syndrome, a book about those who had survived childhood cancer and their feelings of the cancer sword dangling above their heads. 

The first study about mastectomy patients and fear of recurrence was published in the journal Cancer Nursing the same year, but it wasn’t until more recently, when cancer survivors began to live longer (and be heard more) and survivorship issues began to surface, that the subject has gained more widespread attention. 

Spiegel recommends numerous ways to deal with fear of recurrence, including group support. His 1989 study of women with metastatic breast cancer who attended a support group showed that they fared better emotionally than women who did not attend such a group, a finding that has been confirmed by numerous studies. 

Support outside what is seen as a traditional support group can also be helpful. Seven months after lung cancer treatment, Barbara Coman, 68, of Savannah, Ga., was shopping for fabric when a saleswoman offered her help. “She had very short hair and looked like she might have had chemo, so I said that I’d been sick with cancer and she said, ‘Me, too!’ Then she invited me to a group of survivors that gets together once a month.”

The five women gather to not talk about cancer. “The rule is to not mention our problems. We just laugh and have fun. Just knowing we’ve all had cancer creates an instant bond.” 

Though they don’t share emotional issues collectively, they do support one another, Coman says, explaining that when Celine, a member whose cancer had recurred, called Coman in a teary mood, Coman couldn’t talk because she was getting on a plane to go out of town. “So I called [group member] Jean and said, ‘Celine is in trouble. Can you talk to her?’ And she did.” 

While most survivors can work their way through fearful emotions as time begins to heal, some can’t, and they might begin showing symptoms of post-traumatic stress disorder, PTSD, defined as the development of specific symptoms after a mentally stressful event that involves actual death or the threat of death, serious injury or a threat to oneself or others. Symptoms can include insomnia and feeling continuously afraid or on alert in addition to irritability, angry outbursts, difficulty concentrating, hypervigilance and an exaggerated response when startled. 

Syrjala says cancer survivors with PTSD may find themselves going out of their way to avoid reminders of cancer, including the place they were treated or even words as basic as cancer, which can make their hearts pound or leave them feeling like they hit a wall. 

Although PTSD is most often associated with combat veterans, studies show that the disorder affects as many as one-third of people who experience an extremely upsetting event, including cancer. While there is no explanation why some cancer patients get PTSD and others don’t, it is known that having advanced or recurrent cancer, being hospitalized longer and having lower income can be factors. In addition, research shows that childhood cancer survivors (particularly girls) and their mothers are at greater risk for the disorder.

A 2008 study of PTSD by the Dana-Farber Cancer Institute in Boston, published in the International Journal of Gynecologic Cancer, indicated that 26 percent of early-stage ovarian cancer survivors who were tested had mental health scores suggestive of PTSD.

More research is needed to determine the prevalence of PTSD across all cancers and to develop assessment tools and treatment options, which now include anti-anxiety and antidepressant medications,  other psychiatric treatment, counseling that offers strategies to refocus disturbing thoughts, and organized support groups.

The good news is studies show that anxiety lessens with time, and we can learn our triggers and prepare to cope - and even use the anxiety to live a richer life.

Campbell sought help for her anxiety, but those who don't may find that normal feelings of fear can overpower logic, sometimes resulting in unwise decisions.

Spirit

Anxiety is common after cancer, but how do you cope?

Facing Down the Fear

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.

Knowledge

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

Tracing Cancer Connections

For cancer survivors, workplace discrimination is a thing of the past—or almost. Laws passed in the 1990s such as the Americans with Disabilities Act and the Family Medical Leave Act now protect employees, allowing them to modify their working environment or leave it for periods of time and still have a place to return. But challenges remain.

For instance, while these protections cover most of the estimated 3.2 million cancer survivors in the U.S. workforce, the laws don’t cover everyone. Smaller firms do not have to adhere to the ADA or FMLA. In addition, some survivors have decided that disclosing a cancer history can still be a big mistake when trying to climb the corporate ladder or when vulnerable to being swept up in corporate turmoil that can lead to job losses.

At the same time, not telling your history or condition to your company will keep you from getting the very protections the laws allow, says Carolyn Messner, DSW, director of education and training for Cancer

, a non-profit organization that provides free professional support services to anyone affected by cancer.

Many people with cancer are able to work, she says. If you don’t disclose your health situation, you don’t have the ADA protection that can require employers to make workplace accommodations such as flexible working hours (flex-time) or a change in work duties.  

That same protection carries forth after treatment for survivors, Messner adds.

The 12 weeks of unpaid leave each year allowed under the FMLA can be taken an hour at a time for doctor appointments, physical therapy, shortened workdays due to fatigue or chronic pain, or other accommodations needed post-treatment, she says.

In addition, the FMLA can help cancer survivors who find themselves back in treatment. The law allows for time off with job protection for patients as well as caregivers, Messner says, and companies must continue group health benefits on the same terms as if the employee continued to work. Pension or other retirement plans also continue during leave under the FMLA for purposes of vesting and eligibility to participate.

Despite this protection, your decision to disclose your cancer history or a recurrence of your cancer to your employer will require careful consideration. 

Four federal laws governing discrimination in the workforce are relevant for cancer survivors, says Barbara Hoffman, JD, legal research and writing professor at Rutgers University School of Law and a Hodgkin’s lymphoma survivor. The laws include primarily the ADA and the FMLA, with further coverage for some under the Employee Retirement Income Security Act and Federal Rehabilitation Act.

“Instances of discrimination seem to be going down, and it does correlate to when the ADA and FMLA were passed,” says Hoffman. “You can’t plug every hole, but we have made an awful lot of progress.”

Research studies asking cancer survivors to reflect back on their experience during treatment support Hoffman’s conclusion.

A 2007 study from Virginia Commonwealth University’s Massey Cancer Center, published in the journal 

, found that among almost 500 breast cancer survivors and 300 prostate cancer survivors surveyed, nearly 90 percent of women and 85 percent of men were accommodated by their employers with time away from work during their treatment.

A change in job responsibilities, if required, also was generally accepted by employers during treatment, said the study’s lead researcher, Cathy Bradley, PhD, a professor of health administration and the co-program leader of the Cancer Prevention and Control Program at the Massey Cancer Center. Job responsibility change meant employers were willing to shift work to other employees while the patient was undergoing treatment, she says. 

A similar survivor survey conducted in 2006 by the pharmaceutical company Amgen showed that employers accommodated requests made by cancer patients and caregivers. The survey was conducted in collaboration with the National Coalition for Cancer Survivorship and The Wellness Community (now called the Cancer Support Community).

In most cases, requests for time off for doctor appointments, flex-time, rest time, telecommuting, reduced travel and change in job duties were granted by employers, the survey of more than 1,000 cancer survivors and caregivers found.

“The survey suggests that very few requests are denied, thus implying that cancer patients and caregivers simply need to ask for help,” according to an overview of the research.

Hoffman said the Amgen study reflects a sea change in workplace discrimination issues for cancer survivors, compared with the time before the ADA and FMLA.

“This generation is experiencing a much improved workplace environment from previous generations,” she says. “Before the ADA and FMLA, many employers assumed that workers who were diagnosed with cancer would be unable to perform their jobs.  Survivors were fired, demoted, and denied benefits more often than their co-workers.” 

Bradley adds that most such studies to date have been done on professional women with full-time employment, while little research has focused on the working poor. 

For survivors whose cancer returns, Hoffman recommends being upfront with employers.

“If you’re working when you are diagnosed and need some kind of accommodation, you must tell your employer why you need an accommodation,” she says. “Try to work out a reasonable plan with your supervisor or with the person in charge of your human relations department.”

 agrees that continued communication, supported with documentation of health-related requests from a healthcare provider, written in plain English, is key to using the laws for post-treatment needs.

“Show your letter to a social worker, oncology nurse or support group before giving it to your employer,” she advises. “The person receiving it needs to understand your request. Keep your language simple—less is better than more.”

Patrick Garbe, 48, had such a discussion with his employers at a New York City law firm when a malignancy was first found in his neck. A paralegal at the time, he says his employers were “very understanding” about his treatment, which required surgeries that kept him out for months at a time, then radiation appointments that he attended over extended lunch periods.

“My direct supervisor was not only accommodating, but gave me something to work on that was appropriate for my hours and put me on cases with people with some understanding of my condition,” he says. 

After he finally finished treatment, Garbe said his employer assigned him to a team preparing for a large trial.

“I worked extremely hard, excited to be involved and making overtime again,” he says. “Fortunately I didn’t need to stop that streak because of more recurrences. Through several more trials and thousands of billable hours I kept an open and honest discussion with the office about medical updates, treatments, physical therapy and counseling.” 

Cancer survivors have a long history with the ADA. In fact, the first ADA claim to reach a jury was a cancer-based discrimination complaint. 

Charles Wessel, 59, executive director of a security investigation company in Illinois, was fired in July 1992, days after the ADA was made effective, when the company owner learned that Wessel’s lung cancer had spread to his brain. A federal jury found the ADA was violated and awarded $200,000 in compensatory and punitive damages.

Informing employers of a cancer history has strong legal protections, but it may also still have a few drawbacks.

Summer 2008 | Heal

Light by Which to See

Voices

Prostate Protection

A Mission of Empowerment

Facing Down the Fear

Tracing Cancer Connections

To Tell or Not to Tell

Cancer for the Long Haul

Seeing the Light

Supporting the Potential to Heal

Let's Get Moving!

An Opening for Tumor Detection

Trying Anything

Pinpointing Progress

Rough and Tumble Recovery

Going On...

Snippets

Letters to the Editor

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