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