You’ve Been Diagnosed with Cancer. Now What?

Research your diagnosis and available treatment options to ensure that you get the best possible care. 

By Susan Kreimer

At first Trish Randle wondered if she had a hernia. Then the swelling around her belly button became larger and larger. It was time to find out for sure.

Diagnosed with advanced ovarian cancer in the summer of 2010, she thought instantly of the tragic blow to her husband and teenage boy. “You wonder if you’re going to be there—how your son will fare without you,” says Trish, 53, a retired school nurse who lives near Buffalo, New York. “Suddenly,” she adds, “you feel like your whole life was taken away.”

The Initial Response

The initial shock can be mind-numbing. Once a doctor utters the word “cancer,” the rest sounds like a blur. No matter how clearly he or she spells out the truth, the terminology still feels foreign. It’s a language you don’t want to learn.

Recognizing and accepting powerful emotions is part of processing a cancer diagnosis for the estimated 789,620 men and 739,940 women newly diagnosed in 2010.1

“It’s okay to be sad. It’s okay to be unhappy. It’s okay to shed tears,” says Mark Duncan, MD, vice chairman of surgery at The Johns Hopkins Hospital in Baltimore, Maryland. And it’s normal to tune out some of what you hear. Bringing a family member or friend to the appointment doubles the chances of remembering and understanding the potentially overwhelming information that you’re delivered. Even then, Dr. Duncan says, a detailed conversation may be tough to tolerate. A second office visit could be more conducive to discussing the type of cancer, the treatment options, and the multidisciplinary team involved in your care.

“Oftentimes patients are so anxious and so overwhelmed that they do not process the information that is provided,” says Barbara Murphy, MD, a head and neck cancer specialist and an expert in pain and symptoms management at Vanderbilt-Ingram Cancer Center in Nashville, Tennessee. That may lead some patients to second-guess themselves later. Did I make the right choice of doctors, hospital, and treatment? Should I have pursued a second opinion? Would another biopsy or scan have changed the sequence of steps or the outcome? “There are occasions where making a decision quickly is indeed necessary,” Dr. Murphy admits, but in most cases, patients can take time to reflect, prepare questions, review options, and plan their care.

Considering Your Options

A second opinion is essential in confirming a diagnosis, which includes the type of cancer and its stage (how far it has spread beyond the primary tumor site). It makes the most sense to see a doctor at a different facility, says Wendy Chen, MD, MPH, a medical oncologist specializing in breast cancer at Dana-Farber Cancer Institute in Boston, Massachusetts.

In evaluating options, patients may ask about the components and the duration of a recommended regimen—surgery, radiation, chemotherapy, other medications, or a combination of these methods. They could ask the doctor to help them weigh the pros and cons, says Dr. Chen, and to assess the possibility and the severity of adverse effects. “In terms of side effects of treatment, you want to divide them into temporary ones and long-term, permanent ones,” she adds. “You want to know both of them—and understand the likelihood of side effects because not all side effects are equally common.”

Clinical trials are a worthwhile option for some patients. The newly diagnosed period is optimal for considering enrollment in research studies, says Toni Kay Mangskau, a social worker and clinical trials referral coordinator at the Mayo Clinic Cancer Center in Rochester, Minnesota. That’s “when your slate is clean, and you haven’t had any treatment yet,” she says. “When patients have started to receive different treatments for cancer, they may not be eligible for some of the studies that are further along.”

By the time a treatment reaches the third and final clinical trial phase before US Food and Drug Administration approval, it typically has been under review for almost a decade or longer. In a Phase III randomized study, one set of patients will receive the new treatment while the other—the control group—will be administered conventional therapy. “At minimum,” says Mangskau, “you’re going to get the standard treatment, if not something hopefully better.”

Should I Travel for Treatment?

Not everyone is willing or able to travel for treatment. Community and rural hospitals often deliver excellent standard care, says Johns Hopkins’ Dr. Duncan. But for complex cases involving difficult-to-treat cancers, the outcomes tend to be better at centers that handle a high volume of similar cases.

Patients facing these more challenging diagnoses may wish to seek a second opinion at one of these centers, even if it’s just to confirm that the treatment proposed close to home is on target. “If the message is Yes, we would do the same thing, that’s very reassuring,” says Dr. Duncan. On the other hand, “If the message is We would offer this operation or treatment that they can’t offer in a smaller setting, that’s where we would recommend or suggest that the patient strongly consider coming to a major cancer center.”

Take the Time to Get It Right

When seeking a second opinion, ensuring that pathology slides, diagnostic films, and medical records are forwarded ahead of your appointment leads to a more informed visit, says Kim Sweeney, RN, MBA, senior director of patient access and therapeutic services at Roswell Park Cancer Institute in Buffalo, New York. “We all get second opinions before buying a house or a car or having repairs done,” Sweeney says. “Take the time to become informed about your options and work with your care team to choose a treatment plan that fits your case and your priorities.”

reference
1SEER Stat Fact Sheets: All Sites. National Cancer Institute website. Available at: http://seer.cancer.gov/statfacts/html/all.html. Accessed September 23, 2011.

Don’t Delay: An Early Diagnosis Can Make All the Difference

A week before Thanksgiving in 2010, Cecile Holmen lost her job. The next day she canceled her mammogram. “All I could think of was, I don’t want any added expenses,” says Cecile, 50, a licensed substance abuse counselor who lives near Rochester, Minnesota. After the holiday her internist suggested rescheduling the mammogram “because you just never know.”

Additional images and a biopsy detected cancer in the first and earliest stage. The lump, measuring 2 centimeters in diameter, was buried deep within the left breast. “Without the mammogram,” Cecile says, “we would never have found it.”

Although Cecile had health insurance throughout the ordeal, other patients aren’t as fortunate. Some underserved women may still access screening through the National Breast and Cervical Cancer Early Detection Program, part of the Centers for Disease Control and Prevention. Since 1990 the program has provided free or low-cost mammograms and Pap tests to low-income women with little or no health insurance. New legislation in 2000 allowed states to grant these women treatment through a Medicaid option. This option is now available in all 50 states and the District of Columbia.

To qualify for screenings and other services, a woman must be underinsured or uninsured and at or below 250 percent of the federal poverty level. Women must be between the ages of 40 and 64 for breast cancer screening and between 18 and 64 for cervical cancer screening. Nationally, an estimated 8 to 11 percent of women are eligible.

There may be other avenues of assistance for patients who don’t meet the criteria and have a breast mass or a higher risk of cancer, says Laura Zubeck, RN, MBA, director of patient and community education and volunteer services at the Barbara Ann Karmanos Cancer Institute in Detroit. A grant from the Susan G. Komen Detroit Race for the Cure helps support breast services at the institute.

“We’ll pay for screening mammograms, diagnostic mammograms, breast ultrasounds, biopsies, lumpectomies, and mastectomies,” Zubeck says. As for radiation and chemotherapy, she collaborates with social workers and financial counselors, who assist patients with filling out Medicaid paperwork.

“It’s just such a tough thing to do—to enter our world,” she says. “We work together to provide what we can.”

To find out if you qualify for the federal program, visit http://apps.nccd.cdc.gov/cancercontacts/nbccedp/contacts.asp.

From Patient to Doctor

A cancer diagnosis inspires one patient to switch gears and breathe deeply.

“This moment in time, when a patient is first diagnosed with any form of cancer—whether breast, colon, prostate, or anything else—is an extraordinarily vulnerable moment,” says Mark Litwin, MD, MPH. Dr. Litwin would know: his life was turned upside down just before his nineteenth birthday, when he found a lump in his testicle. The diagnosis: cancer.

An economics major planning a career in international relations, he switched gears after his sophomore year at Duke University. “I was introduced to medicine from the other side of the white coat,” says Dr. Litwin, now 50 years old and a professor of health services and urology at University of California, Los Angeles. “Of course, it was probably fated that I would become a urologic oncologist.”

Three decades later Dr. Litwin views his own transformation from a positive perspective and observes how other patients have gained a greater sense of purpose and joy. A proud father of 11-year-old twins, the cancer survivor appreciates the blessings bestowed upon him.

Although a diagnosis of malignancy can take an immense physical and emotional toll, stories such as Dr. Litwin’s prove that good fortune is possible in the wake of bad news. For many patients the experience serves as a precious reminder of the brevity of time and the sweetness of life.

“It sounds cliché, but I really began to stop and smell the roses,” he says. “I began to take deep breaths. This is 30-plus years ago, and I still do it.”