This is a story that starts in the middle. For a moment, we breeze past the sickening arrival of the disease. The mammogram. The biopsy. The phone call. The confusing words from the white coat, all a blur. We skip the lumpectomy to remove the cancer from the breast and, for five years, the multiple visits each year to the surgeon and the oncologist to ensure that the cancer is gone and remains gone. We acknowledge the worry of a recurrence, always there, often unspoken, sometimes irrational, but dangling like the sword of Damocles.
Then, sometime during that fifth year in 2003, at the age of 49, Joan Venticinque feels something on her right breast—the other breast; the one that was supposed to be healthy. She visits her surgeon at the Stanford Medical Center, who feels the same thing. And this is how it begins again.
She has a mammogram. It shows nothing. She has an ultrasound, which does show something, and she agrees to a surgical biopsy without delay. Joan is a thin woman with short, blond hair, and is active and fit. A recreational swimmer, she finds peace five days a week, one mile a day, gazing at the lines on the bottom of the pool as her arms and legs propel her through the water.
Three days after the biopsy, the phone rings. It's 8 p.m. and she's sitting at her computer. Her husband is in the shower and their one child, a son who was in eighth grade the first time she was diagnosed, is more than 300 miles away, beginning his freshman year at UCLA. The cancer in her breast is invasive, her surgeon says. What follows is a lumpectomy and a lymph node biopsy from her underarm. The pain is intense, a searing feeling, and the procedure leaves her arm in a sling and her body away from the pool.
The weekend ahead is Parents' Weekend at UCLA, and Joan and her husband have been looking forward to the trip south. Joan can't bring herself to tell her son over the phone about the cancer's return, so she decides to do it in person, watching his eyes tear up as she explains why her arm is in a sling. She's been through this before, and knows that telling family and friends causes them pain, putting her in an odd situation where she ends up comforting others.
Next, she figures, she needs to tell her graphic-design clients—particularly the association of nurses for whom she has done freelance work for nine years. She explains about the cancer, and asks for a few days off. Almost immediately, she hears that the association has decided to make some changes, and won't be needing her services anymore.
This infuriates Joan. "I felt like I was being marginalized," she recalls. "I'm not dead yet."
For generations, the word "cancer" translated to mean a terminal disease, considered a death sentence by many patients. But more and more, doctors have begun to look at some cancers as chronic illness. As research and innovations in technology and treatments enable earlier detection and better care (see sidebar), people are living longer after a cancer diagnosis, with an estimated 66 percent of adult patients alive five years later, compared to 50 percent in the mid-'70s. Combine that with the increased incidence of some cancers and a growing elderly population, and you have more people living with cancer than in previous generations. The National Cancer Institute estimates that while 3 million people were living with cancer in the United States in 1971, by 2005 the number was up to 11.1 million.
With the increase comes a slew of issues. Survivors can have heightened risks for long-term side effects from treatments or the disease. For almost all, there are worries of recurrence. There are possible physical effects of treatment, some of which might not show up for years. Information about follow-up care may be insufficient. Survivors may confront psychological issues, sexual impairment, pain, fatigue, and employment and insurance discrimination.
The term "cancer survivor" is defined slightly differently by various organizations, but it generally means anyone who has been diagnosed with cancer, from the time he or she is diagnosed and treated through the remaining years of life. A 2005 report by the Institute of Medicine titled From Cancer Patient to Cancer Survivor: Lost in Transition helped draw attention to this "distinct phase of the cancer trajectory which has been relatively neglected in advocacy, education, clinical practice, and research." With the Institute of Medicine's report, and with more cancer survivors living with the effects of the disease or its treatments, advocates began calling for greater attention to survivorship issues.
"The greatest of the many barriers to effective long-term survivorship care is a lack of awareness," wrote a team of four Stanford health care providers in Everyone's Guide to Cancer Survivorship (Andrews McMeel, 2007). The authors—adjunct clinical professor of medicine Ernest Rosenbaum, psychiatry and behavioral sciences professor David Spiegel, clinical social worker Patricia Fobair and registered nurse Holly Gautier—noted that by 2030, there will be an estimated 20 million survivors. The Institute of Medicine report warns, "The current system for delivering care to the growing number of cancer survivors is inadequate."
It's a concern that has led many in the medical field, including doctors and researchers at the Stanford Cancer Center, to devote more attention to cancer survivors.
"We think this is a very important issue," says professor of medicine Beverly Mitchell, director of the Cancer Center, which expects to welcome a new faculty member in the next year who will help work on a survivorship program. "There are issues in terms of physical factors, risk factors, things that need to be screened for. Also there are long-term psychological effects." The important first step, she says, is to identify what survivors need. "Define what the problems are, and then how to address them."
For many, living as a cancer survivor comes with a new perspective on life and a change in habits. But without guidance, staying on top of some of the long-term side effects and surprises is a steep learning experience.
"People often feel helpless," says Spiegel, who directs Stanford's Center for Integrative Medicine, which provides treatments and workshops promoting wellness and healing, helping patients cope with the pain and stress that often come with illness. "There's anxiety about relapse, you've got to set up a program of surveillance, there's anxiety about long-term effects of treatment, there's long-term fatigue, and there's re-entry-into-life problems.
"We forget, nobody is well trained to live with this," Spiegel says. And when the active period of treatment is over, "oddly enough, the transition can be very difficult."
"I just want a double mastectomy," Joan decided. "I'm not doing this again." After having the lumpectomy on her right breast, she still had ductal carcinoma in situ there, and a high risk of developing further cancer. She no longer trusted her body and wanted to eliminate any chance of cancer. She met with a plastic surgeon and opted for the mastectomy with expanders put in—empty implants that would gradually stretch the tissue through periodic injections of saline until permanent implants could be placed. She came home from the surgery on a Tuesday, and Saturday had to return to the hospital with a swollen leg and a blood clot. This time she returned home with a box of syringes so she could inject herself with a blood thinner. She also needed to replace the hormonal therapy, Tamoxifen, with another, Arimidex—one that would require her to be postmenopausal. So, just a few months after her mastectomy, Joan had her ovaries removed, which caused instant menopause.
In the years that followed, although the cancer was gone, Joan experienced joint pain so severe she couldn't open a water bottle. She found herself waking up hourly at night, and was often jittery during the day. Other side effects—ones not mentioned by her oncologists—affected her relationship with her husband: her loss of libido, vaginal dryness, the new pain she felt during intercourse.
"I was getting pretty tired of the whole experience," she told an audience at a breast cancer conference several years later, in 2007. "We cancer patients keep putting one foot in front of the other, going through things we never imagined. I think the toughest part isn't physical, it's mental."
To do her best to take control of the situation, Joan enlisted Stanford's support services. She participating in the Living Strong, Living Well strength and fitness program, a partnership with the YMCA designed specifically for cancer survivors. The 12-week program focuses on helping survivors increase flexibility and endurance, improve their mobility, and build their muscles. Joan began lifting weights. She also started attending one of Stanford's regular support groups.
"We know that cancer patients do better when they get good emotional and social support," says Spiegel, who also directs Stanford's Center on Stress and Health—a research center that studies how stress and support can influence a person's health. "While fear and sadness go with the territory, anxiety and depression can complicate treatment, impair survivorship and even affect the course of treatment." In late September, at Stanford's third Comprehensive Cancer Research Training Program, Spiegel will speak about survivorship issues, including his current research on psychophysiological pathways that link better coping with living longer, and his studies on sleep and stress hormone patterns and their effects on the immune and endocrine systems and disease progression.
"Exercise is important, psychological care is important, and nutrition is important," says Ernest Rosenbaum. In Everyone's Guide to Cancer Survivorship, Rosenbaum points to estimates that people can lower the risk of breast, prostate, pancreatic and colon cancer by 30 to 40 percent by eating a mainly plant-based diet, exercising and maintaining a healthy weight. In 2000, Rosenbaum worked with two of his co-authors, Spiegel and Gautier, to set up Stanford's Cancer Supportive Care Program—a free resource to provide support and information to cancer patients about their care and how to cope. "There's a fear of dying [and questions of] 'will I ever get back to a normal life?'" Rosenbaum adds. "An organized philosophy helps them get back to a normal life." (For Spiegel's prescribed philosophy, see sidebar.)
In 2004, Gautier moved the Cancer Supportive Care Program to the new Cancer Center's deliberately patient-centric environment, as part of the concierge services offered. Piano music floats through the air of the building's lobby. The infusion center, where patients receive their chemotherapy, is no longer in a dark and dreary basement, but rather in a room with large windows and plenty of light. On the far end of the lobby sits a health library, staffed by a librarian who can assist patients with research to learn more about their disease. And not far from the entrance to the building sits Gautier.
Gautier describes the Supportive Care Program she manages as an anchor. From the visible spot in the lobby, it provides a resource that patients and those who support them can come back to and feel connected with. Gautier appears to know, and greet, many of those who walk through the lobby.
Announcements posted behind her tell of support groups and of free nutrition consultations on-site. A nutritionist, for example, has drop-in hours during radiation therapy one day each week, as well as time for appointments on three additional days.
Gautier shares a calendar of services: restorative yoga, healing and guided-imagery classes, 15-minute chair massages, workshops on managing and understanding chemotherapy. There is a wide array of educational opportunities and talks.
Many patients and members of their support networks continue using the classes after their treatment ends, she says. "The supportive care is open to the entire community."
More than five years after meeting at Stanford, Joan's support group still tries to get together about once a month, now rotating locations among the homes of the 17 or so members still participating. Joan remembers when they started, fitting nearly a dozen cancer patients into the Stanford office of Fobair, herself a breast cancer survivor. When Joan mentioned she was thinking of getting expanders put in, another patient called her over to feel them on her own body, and tell her what to expect. Sharing information helped them feel a little more in control, Joan says.
"We had a great feeling with each other and decided to stay together," Fobair says as the group gathers for a Saturday afternoon potluck at Joan's house, poring over photographs and catching up.
For Alessandra Capella, who watched her mother die of colorectal cancer when Alessandra was just 12 years old and her mother only 37, the support she received from the other group members when she herself got cancer was invaluable. "I think it's the single most important journey in your life because it affects your mortality," she notes, "so the people that share it with you become that much more important to you."
Some of the women in the group talk about "chemo brain"—mild memory loss and occasional trouble finding words or problem solving. They say the fuzziness can linger after chemotherapy, or even show up after treatments are complete. Susie Brain says it took a year and a half after treatment before she was back to a fully functioning cognitive level. She had memory issues and a general cloudiness, often forgetting things she had planned to do. "It made me anxious because I wasn't myself."
The women continue to share their experiences. Many contributed stories and poems for an anthology published by Stanford's School of Medicine titled Learning to Live Again, with the hope of encouraging the newly diagnosed. And they've been there for each other during difficult relapses, as well. When one member grew ill a second time after several years, the group organized a rotating schedule of sending get-well cards, so she would get a new card every day.
Several of the group's members now spend much of their lives helping others with cancer and calling attention to the need for stronger survivorship programs: explaining the benefits of patients having detailed information about their surgical procedures and cancer treatments to date, information on potential late effects of treatment, and recommendations toward the end of treatment for surveillance and well-being.
Each Monday, Joan returns to Stanford's Cancer Center, not as a patient, but as a volunteer patient navigator. She introduces herself to patients in the clinics, accompanies them to and from their appointments, or sits with others in the infusion area. Often she'll ask about their interests, staying with them if they are alone and want the company.
Thoughts of a recurrence remain out of mind for Joan when she's helping others—she doesn't picture herself in the chair receiving chemotherapy as she sits next to patients—but fears do creep in if she has a strange ache or pain that lasts more than a couple of weeks.
But this is a story that ends in the middle.
Joan is not afraid of death, and she refuses to let it dominate her life. She continues to swim, to take vacations, to work passionately on advocacy issues—her experiences have put her focus on life and on what she wants to do with it—but she doesn't feel like cancer is something in her past, despite being cancer-free. Thoughts, related issues, side effects still remain. "It's always there," she says.
"That's why I don't see myself as a survivor of cancer. I always say, I'm surviving."
BRIAN EULE, '01, is the author of Match Day: One Day and One Dramatic Year in the Lives of Three New Doctors.
