The Doctor’s World

By LAWRENCE K. ALTMAN, M.D
Published: July 29, 2008
New York Times

When Senator Edward M. Kennedy disclosed on May 20 that he had brain cancer, three days after suffering a seizure, doctors did not list surgery as a possibility. A news release from Massachusetts General Hospital in Boston left the impression that radiation and chemotherapy were the main options for his pernicious type of cancer.

Two weeks later, Mr. Kennedy, 76, flew to Durham, N.C. There, at Duke University on June 2, neurosurgeons operated for three and a half hours and declared the procedure “successful,” though they did not specify their criteria.

Precisely why Mr. Kennedy’s treatment course changed is not known; he and his doctors are not talking to reporters.

What is known is that a few days after Mr. Kennedy learned he had a malignant brain tumor in the left parietal lobe, he invited a group of national experts to discuss his case.

The meeting on May 30 was extraordinary in at least two ways.

One was the ability of a powerful patient — in this case, a scion of a legendary political family and the chairman of the Senate’s health committee — to summon noted consultants to learn about the latest therapy and research findings.

The second was his efficiency in quickly convening more than a dozen experts from at least six academic centers. Some flew to Boston. Others participated by telephone after receiving pertinent test results and other medical records.

Except for the circumstances, telephone participation and the number of invited experts, the meeting resembled the tumor board meetings that specialists regularly hold in their hospitals.

For Mr. Kennedy, the scene was all too familiar. It resembled those he had convened to map the care for two of his children when they had cancer years earlier.

A son, Edward Jr., who is now 46, had part of his right leg amputated in 1973 for bone cancer. Mr. Kennedy invited a group of experts to his home to discuss follow-up care for the boy, who then received radiation and two years of an experimental form of chemotherapy.

A daughter, Kara Kennedy Allen, had lung cancer in 2003. After some surgeons deemed the cancer inoperable, bolder surgeons operated. Ms. Allen is doing well five years later.

Mr. Kennedy is hoping for similar success as he completes about six weeks of radiation, with chemotherapy expected to continue for a year.

The initial news release about his brain tumor called it a glioma without specifying the type. A meeting participant described it as a glioblastoma, the deadliest form of brain cancer. Patients live, on average, about a year after it is detected.

In the meeting, experts spoke about surgery, radiation and chemotherapy, said the participant, Dr. Raymond Sawaya, chairman of neurosurgery at Baylor College of Medicine and the M. D. Anderson Cancer Center in Houston.

Opinion about the benefit of surgery for Mr. Kennedy was divided. Some neurosurgeons strongly favored it; two did not, Dr. Sawaya said, including himself, largely because the cancer was not a discrete nodule, but was spread over a large area, making it unlikely that most of it could be removed.

Chances for success are somewhat proportional to the amount of tumor removed, although experts disagree about precisely how much visible tumor must be removed for the best chances.

Whether the surgery was justified or not, that Mr. Kennedy had it at Duke embarrassed the Massachusetts General Hospital, a Harvard teaching institution. The change in venue strongly suggests that the meeting somehow led to the more aggressive surgical approach.

The urgency of the operation forced Mr. Kennedy, the third-longest-serving senator in history, to cancel his receiving an honorary doctorate from his alma mater, Harvard.

The commencement was scheduled for six days after the consultants’ meeting, and doctors said that was too long to wait, Mr. Kennedy told the Harvard president, Drew Gilpin Faust, in a telephone call, according to a friend who did not want to be identified. When Dr. Faust said Mr. Kennedy would receive the degree in person in the future, the announcement received a standing ovation.

In declaring his operation successful, Duke doctors did not define their criteria, like whether they had removed all visible cancer or spared him complications like loss of speech.

A week later, Mr. Kennedy returned to the Boston hospital for continuing outpatient care and has released sparse information about his cancer and progress. Although he is learning to cope with fatigue, “the news is really all positive and encouraging,” his wife, Victoria, told friends in an e-mail message this month.

On July 9, he flew in virtual secrecy to Washington to make a surprising and dramatic appearance in the Senate, stirring the normally staid chamber to a rousing ovation and moving many colleagues to tears. He looked steady. But his cheeks were puffy, a telltale sign of heavy steroid treatment, as he voted, delivering Democrats a decisive victory on a signature health care issue.

Mr. Kennedy can tap leading doctors for answers in a way few patients could. His celebrity status aside, he has spent a career promoting insurance and other ways to improve the health of Americans. And he has had a track record of being thorough and diligent in researching medical options when relatives or friends have fallen ill.

His colleague John Kerry, also a Massachusetts Democrat, said in an interview that when his first wife, Julia Thorne, was waging what turned out to be a losing battle with bladder cancer two years ago, “Teddy recommended specifically getting a group of doctors together from different places and different approaches and get them all on a call so that you can force different theories to be tested by the others who are there.

“He actually helped me find the right people to put on the call,” Mr. Kerry said. “The process was unbelievably effective.”

Occasionally, some patients, including prominent scientists, have asked doctors to organize a number of independent experts to advise about their illnesses.

Yet powerful and wealthy people who could have convened such a group have delegated the consulting to their doctors.

Several doctors not connected with Mr. Kennedy’s case said in interviews that they admired his resourcefulness in getting more opinions simultaneously. At the same time, these doctors said many average patients gained competent advice, without a command performance, by sending pertinent records to experts for their opinions.

Many patients search the Internet for medical information and ask that their scans and other data be sent electronically or by overnight services.

Then such patients visit, call or write the consultant.

Second opinions have their downsides as well as benefits. One downside is that people inexperienced in reading medical papers “tend to editorialize and pick out what they want to be the answer, and many of us may not agree with their interpretation,” said Dr. Eugene S. Flamm, a neurosurgeon at Montefiore Medical Center in the Bronx.

Just sending images and records is far less preferable than meeting with a patient before rendering an opinion. “I do not operate on films,” Dr. Flamm said. “I operate on people.”

Meeting with patients “is an important factor in terms of their expectations and concerns,” he continued, adding: “I can see a white ball on a scan and say yes, that is a tumor, I agree. Beyond that it is rather difficult to come up with a treatment plan based on that, other than saying, yes I would operate or I won’t.”

Outcomes of surgery for glioblastomas have not improved significantly in recent decades, several doctors say, so they tend to recommend a wait-and-see approach — reserving surgery for palliation if it is needed later in the course of therapy.

These doctors said that the concept of reducing the amount of cancer so radiation and chemotherapy can interact more effectively made a lot of sense theoretically, but in a practical sense, had not panned out.

Some experts said they favored a more aggressive surgical approach, when it can be performed safely because it offers the best chance of longer survival, particularly when combined with various forms of radiation and chemotherapy. The experts say that even if surgery cannot prolong life many years, it can offer more quality for the time that is left.

The experts also contend that newer techniques like functional brain imaging and mapping are improving the safety and outcomes of brain surgery for glioblastomas. Neurosurgeons can test tiny areas of the brain to map functions controlled by the specific areas. Because these areas vary in anatomic location with the individual, mapping helps the surgeon avoid cutting into vital areas and damaging areas that control vital motor and cognitive functions.

Even when neurosurgeons do sophisticated imaging testing before surgery, they enter the operating room somewhat uncertainly.

Long-term survival, an uncommon outcome, is considered to be three years or longer, and most such survivors have had aggressive brain surgery to remove the tumor, experts say. Long-term success also depends in part on a patient’s age and other ailments.

The uncertainty of what to do in each glioblastoma case shows that doctors have much to learn about brain cancers. That knowledge gap makes philosophy an important part of the decision process for patients and doctors.

Many patients willingly take the risks of aggressive brain surgery because they understand that their chances of longer survival are reduced without an attempt to remove as much of the visible tumor as possible.

Surgeons realize that while they can operate on virtually every patient, some patients are not surgical candidates.

But some patients insist on surgery even when doctors say the risk is too great because the cancer is dangerously close to vital areas of the brain.

“It is human nature for patients, in saying they want to save their lives, say I am willing to lose my speech or be completely paralyzed,” said Dr. Sawaya, the Houston expert. But most neurosurgeons are unwilling to take such risks, he said, “because patients paralyzed after surgery are miserable, and also everybody around them is miserable.”

Dr. Mitchel S. Berger, chairman of the department of neurosurgery at the University of California, San Francisco, flew to Boston to participate in Mr. Kennedy’s meeting and care. He spoke only about his experience in other cases, including the recent one of a woman who at 80 is four years older than Mr. Kennedy. She has a glioblastoma that Dr. Berger judged likely to cause her death in about two months.

If he could remove all visible brain cancer, the operation, combined with chemotherapy and radiation, could provide 3 to 15 months of good-quality life with her family, Dr. Berger said. He added: “While that may not be a huge amount of time — one-eightieth of her lifetime — it is a lot of time to say and do many things. When people look at it in that context, it becomes a big and significant piece of time.”

The reality is that two people who listen to a doctor spell out the risk-benefit profile can come to different decisions. One may say surgery is not worth the risk, while the other says, “That is one way I want to say goodbye.”