How To Choose Cancer Treatment Options
Importance of Second Opinion, Questions to Ask as Navigating Care
December 4, 2010 | Elizabeth Older
This article initially appeared in the Spring 2008 issue of Momentum, but the advice and questions to ask still hold true.
When the doctor says “it’s cancer,” it’s not just the much-feared diagnosis itself that can affect the rest of your life. Right from the start, decisions about treatment can be key to fending off the nation’s second largest killer.
Today, many patients who receive appropriate care can expect to become cancer-free, while more and more are living with the disease much like any other chronic condition. Cancer care in the United States arguably is the best in the world; still, some patients suffer through misdiagnosis, substandard treatment and inadequate follow-up that can reduce their chances for the best outcome.
Diagnosis and treatment can vary widely, research suggests, leading to recommendations that patients and their advocates take proactive steps to ensure that the treatment recommended for their specific cancer reflects the current standards of best care.
Stephen B. Edge, M.D., whose research looks at ways to evaluate and improve the quality of cancer care, says that there’s “no question many Americans do not get good cancer care. It is simply not a matter of debate anymore.”
The single biggest reason is lack of adequate health insurance, says Edge, medical director of the Breast Center at Roswell Park Cancer Institute in Buffalo, N.Y. That affects access to care and often costs patients an early-detection advantage because they delay going to the doctor or don’t get recommended cancer screenings.
“There are certainly these kinds of barriers to care, but our system is very chaotic,” Edge explains. “Coordination of care over time is essential. Cancer care extends over time and requires the input of four or five doctors.”
The gap in cancer care was highlighted in a 1999 report from the Institute of Medicine’s National Cancer Policy Board, which prompted several major initiatives aimed at measuring and improving the quality of cancer care.
In 2006, the first national study to assess the quality of cancer care showed that patients with early-stage breast cancer received 86 percent of generally recommended care, while patients with early-stage colorectal cancers received 78 percent of generally recommended care. Commissioned by ASCO, this research for the first time quantified the cancer care gap based on nearly 1,800 patient surveys and medical records in five major metropolitan areas. The study did indicate the quality of cancer care generally was better than that for some other common diseases, such as hypertension and diabetes, but more analysis will be needed to learn why care differed, in some cases dramatically, says Johnson, Cornelius Abernathy Craig Professor of Medical and Surgical Oncology.
“This is a treasure trove of data,” Johnson says.
In the meantime, experts say, patients should arm themselves with information as they navigate their way to the cancer care decisions that are best for them.
If a cancer diagnosis happens to come from an experienced cancer specialist with top-notch credentials, a patient may not feel the need to get a second opinion before beginning treatment. However, with a potentially life-threatening disease like cancer, most doctors expect – in fact, some even encourage – patients to seek advice from another physician.
“They have to depend on their doctor,” says Johnson. “I think with cancer, you have to assume a doctor who is board certified is, in fact, a capable individual. However, I think it’s quite appropriate to get a second opinion.” Even so, insurance coverage for second opinions varies by policy and type of treatment, so in some circumstances patients may face paying for this reassuring step.
The first goal in the second-opinion process should be to confirm the diagnosis (see story on p. 33). At Vanderbilt-Ingram, all reports and pathology slides are reviewed when a patient comes for a consultation, and additional tests are done if necessary. This intense evaluation is important because all cancers are not alike. A doctor who routinely treats just one or a few types of cancer may use specialized knowledge and diagnostic tests to evaluate the type and extent of a cancer – called staging – which is imperative to getting the most appropriate treatment at the start of care.
While the Internet and other sources have made it possible for patients to learn a lot about their disease, ultimately they will need to rely on a trusted medical professional to help them evaluate that information, says Johnson.
“What most patients want is guidance,” he says.
Seek out experienced physicians and facilities
All board-certified oncologists should have the same basic credentials. However, specialized centers, particularly those associated with universities, have experts who focus on specific cancers and benefit from access to world-class research and technology.
“It’s volume and specialization; it’s a multidisciplinary team approach that distinguishes academic-based centers,” Johnson says. “The culture at a teaching institution like Vanderbilt is such that every decision is questioned and reviewed by one’s peers very, very thoroughly, so what emerges is a very appropriate plan for each patient.”
While these are not the only factors that affect outcome, survival statistics for patients treated at major cancer centers for certain malignancies exceed those of people treated by less specialized doctors and facilities, Johnson points out. Doctors who treat just one or a few specific cancers statistically are better at it, and those who specialize in rare or aggressive cancers may have unique expertise.
“Patients generally can understand how experience relates to outcomes,” says Joseph A. Smith, M.D. “In particular, urologic cancer outcomes are directly related to the training and expertise of the surgeon.”
Smith chairs Vanderbilt’s Department of Urologic Surgery, which is ranked among the nation’s best in this specialty by U.S. News and World Report and includes physicians who are nationally recognized experts in a variety of urologic cancers. The department also has been a leader in robotic and minimally invasive surgical procedures.
Vanderbilt’s urologic oncologists see patients referred by urologists in the community, as well as family physicians. That number includes many patients with prostate cancer, for whom treatment recommendations can be diverse and confusing. While it isn’t common for a patient to get a different diagnosis at Vanderbilt, it’s not unusual for treatment recommendations to differ, especially when combined regimens are considered, Smith says.
“Selecting the right treatment for the right cancer is key,” he says.
Joe B. Putnam Jr., M.D., deals with many cancers that don’t come with a lot of good treatment options. Well-meaning doctors sometimes rush patients into treatment when time might be better spent carefully diagnosing the stage of the cancer, determining the best treatment sequence and considering other factors, explains Putnam, Vanderbilt’s chairman of Thoracic Surgery.
“You need to make the best decision possible the first time,” says Putnam, an Ingram Professor of Surgery who routinely treats cancers of the chest, including those of the lung and esophagus.
As cancer specialists do throughout Vanderbilt-Ingram, Putnam gets input on individual cases from a multidisciplinary team of physicians, as well as other specialists as needed.
“With that, you have multiple perspectives, multiple therapies available,” he explains, the coordination of which has become integral to cancer care as patient treatment plans often include more than one approach. “I think we do multidisciplinary care here at Vanderbilt probably at a world-class level.”
Both Smith and Putnam point to the importance of highly skilled nurses and other medical staff, as well as up-to-the-minute technology, as imperative for delivering quality cancer care for
“If you do something over and over, you tend to get very good at it, very efficient,” says Putnam. That combination can drive down costs while also giving patients more statistical confidence about the care they will receive, he says.
Vanderbilt physicians are accustomed to providing both initial treatment consultations and second opinions, and they understand that many patients will want to know if they can have their treatment just as well close to home.
“Having the appropriate care as close as possible to the family’s home is highly desirable,” says Putnam.
Most patients who come for consultations at Vanderbilt should be able to return to their home community to get their treatment, Johnson says. But, he adds, research suggests that certain cancers – even common, highly curable ones – may be more successfully treated at major cancer centers.
Guidelines emerge to help doctors and patients
The managed care movement that emerged in the 1970s brought with it efforts to better define what tests and treatments were proven effective for specific conditions. While there have been drawbacks associated with managed care, the movement did usher in a growing focus on evidence-based medicine, the concept that best practices can be defined by looking to research results and, in some cases, expert consensus.
Cancer doctors and their patients have some very specific guidelines to consult when considering treatments and timelines. The National Comprehensive Cancer Network (NCCN), a consortium of 21 of the world’s premier cancer centers including Vanderbilt-Ingram, has developed free Web resources for both clinicians and patients. The guidelines detail best-practice treatments for the cancers that affect 95 percent of all patients.
“We hope it will end up with better care for patients, and I think it will,” says Joan S. McClure, M.S., who is responsible for the NCCN guidelines as the network’s senior vice president of clinical information and publications.
Other diagnosis and treatment information is available from the NCI, the American College of Surgeons and ASCO.
NCCN’s guidelines are developed and regularly updated by panels of different specialists from the 21 member centers. This multi-disciplinary approach aids in the coordination of care from one cancer specialist to another, McClure said, noting that treatment “decision trees” may apply to as many as 85 percent of patients.
“In every practice there are going to be patients who don’t fit the guidelines,” she explains. “If a practitioner is slavishly following the guidelines regardless of the situation, that would not represent good quality care.”
The biggest barrier to defining quality cancer care may be that people have trouble pinpointing what to measure, Johnson explains. While some want to focus on process measures – what is done and when it is done – others suggest that patient outcomes – how people fare after treatment – ultimately are most important.
“It’s a very big and challenging problem” for which gathering evidence is both time-consuming and costly, he says.
For patients, the availability of guidelines can be a source of comfort as they consult with doctors about their own specific diagnosis and treatment options. Ultimately, though, those guidelines must be taken into account with other factors, and the best care will be individualized, Putnam says. “We take care of patients one at a time,” he says. “I tell patients that together we will make a good decision – we will make the best decision for you.”
Look for survivor support
With more than 10 million Americans living today with a history of cancer, it’s clear the disease is an everyday factor in the lives of many people. However, providing ongoing monitoring and follow-up care for these patients is a relatively new and growing challenge for the medical community.
“We know that people who have had cancer are at risk for other disease processes,” not only a recurrence of cancer, but also other problems caused by cancer treatments, explains Johnson.
Vanderbilt-Ingram provides support through a comprehensive survivorship clinic and through patient education and outreach programs, including partnership with programs including the American Cancer Society and Gilda’s Club Nashville. But Johnson says the hope is that physicians in training today will learn more about how to provide proper monitoring and follow-up care for survivors, especially as their numbers are expected to balloon as the oversized baby-boom generation moves into old age, when cancer becomes more common.
“We definitely provide this at Vanderbilt, but our view is this should not be a service that is unique to us,” Johnson says. “It’s a good problem (caring for long-term survivors), in a bizarre sort of way.”
Recognizing the challenges facing cancer survivors, several medical sources have developed in-depth information and guidance. These include ASCO’s Cancer.Net and the NCI’s cancer survivorship Web pages.
As for the future of the quality of cancer care in America, Johnson says he’s optimistic that over time it will get better and more consistent for all those who need it.
“However, I think it will be evolutionary, not revolutionary,” he observes. “It’s going to take time.”
The Power of a Second Opinion
Jim Grant is living proof that not every cancer diagnosis should be taken as the final word.
When doctors in Hopkinsville, Ky., told Jim he had lung cancer and needed immediate surgery, he and his wife, Brigitte, decided to get a second opinion at Vanderbilt-Ingram Cancer Center, one of only 39 National Cancer Institute-designated Comprehensive Cancer Centers.
Brigitte, whose first husband died of lung cancer, wondered if the newly diagnosed malignancy could be related to the bladder cancer Jim had been treated for a year earlier, but the local specialist assured her that it wasn’t.
The family physician helped get Jim an appointment at Vanderbilt-Ingram, but desperate to see a doctor sooner, Brigitte went online and filled out the self-referral form on the center’s Web site. Within hours, she was talking to a nurse with the Cancer Information Program.
Started in 1997, the toll-free telephone resource now has four nurses who field some 3,000 calls each year, says program director Teresa Knoop, R.N., who holds a master’s degree in nursing and has more than 20 years experience. People call to locate a doctor skilled in a specific procedure, arrange for a second opinion and, most often, to find out about innovative investigational treatments offered through clinical trials.
The nurses help patients work through insurance issues, pull together medical records and cross other hurdles, often logging dozens of phone calls and e-mails for a single caller. Knoop has found that people may not realize the difference a second opinion can make, while many older patients, especially, feel they will offend their hometown physician by asking about it.
“They don’t know to get a second opinion,” she says. “They don’t understand the importance of that, or they’re just absolutely scared.” But she knows from experience that the vast majority of oncologists and other physicians are very supportive when patients decide to ask another doctor to review their case. “Every day, I see it can make a difference,” she says.
As for Brigitte’s experience, she has high praise for the nurses and the assistance they offer patients and their family members.
“I think I called every day to see if there was a cancellation,” she says, mentioning nurse Pam Carney as a frequent contact. Her persistence paid off. Vanderbilt lung cancer specialist David Carbone, M.D., Ph.D., stayed late one day just after Thanksgiving to meet with the Grants and the second opinion process was set in motion.
Within a few days Carbone called with a message: “I’ve got good news. It’s bladder cancer, not lung cancer,” Brigitte recalls. A review of Jim’s case had revealed that the tumor in the lung was bladder
cancer that had spread, which meant the treatment would be different and the prognosis was much more promising. Jim began the first of four monthly treatments in December.
The 64-year-old health enthusiast has this advice for people faced with a cancer diagnosis: “I think if you’re at a community hospital where they’re not as specialized, you definitely need a second opinion.” While acknowledging that patients naturally might want to avoid the cost and time required to travel to a dedicated cancer center, Jim continues, “In the long run, it’s something you really need to do. It’s too serious a thing to take the easy way out.”
The tenacious Brigitte agrees: “Absolutely, go talk to another physician, a specialized oncologist in the particular field. The diagnosis could be the same, but you have the peace of mind of knowing that it is.”
Questions you should ask as you choose a doctor
1. Does this doctor or surgeon have the education and training to meet my needs?
2. Does this doctor or surgeon work as part of a multi- disciplinary team that specializes in my type of
3. Does this doctor or surgeon see patients at the treatment facility I’ve chosen?
4. Is the doctor board-certified, and if so, in what specialties?
5. Has this doctor been evaluated by a professional society such as the American College of Surgeons?
6. What types of cancer does this doctor or surgeon treat?
7. How many patients with my type of cancer does this doctor or surgeon treat?
8. How often does this surgeon perform the type of surgery that I need? What are his or her success
9. Is this doctor or surgeon involved in research and clinical trials?
10. What new technologies or surgical procedures does this doctor or surgeon offer?
11. Who covers for this doctor or surgeon when he or she is away? Does this person have access to my records?
12. How long does it take to get an appointment with this doctor or surgeon?
13. Does this doctor or surgeon listen to me and treat me with respect?
14. Does this doctor or surgeon explain things clearly?
15. Who else is on the treatment team? What are their qualifications and expertise?
16. Is this doctor covered by my health plan?
Questions you should ask as you choose a cancer center or hospital
1. How many cancer patients does this center treat?
2. Does this center specialize in my type of cancer?
3. Does this center have teams of specialists in specific types of cancer who meet regularly to discuss cases (called tumor boards or conferences)?
4. If so, how specialized are these teams? What types of specialists are involved in these meetings?
5. Does the center or hospital conduct research and does it offer clinical trials for my cancer?
6. What support services does this center provide?
7. How will this center support my quality of life during and after treatment?
8. Is the center designated by the National Cancer Institute?
9. Is the center approved by the American College of Surgeons’ Commission on Cancer?
10. Is the center accredited by the Joint Commission on Accreditation of Healthcare Organizations?
11. Is this center part of a Magnet hospital recognized for quality nursing care?
12. What new or innovative technologies or procedures does this center offer?
13. Is this center covered by my health plan?
14. Is the center a part of the National Comprehensive Cancer Network?
15. How does the facility check on and work to improve its quality of care?
16. Does the facility explain patients’ rights and responsibilities? Are copies of this information available to patients?
- Vanderbilt-Ingram has created a Web site to help patients navigate their cancer choices at www.vicc.org/choose.
- Read the full issue of Momentum online.
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