very interesting story on front page of Wall Street Journal

[Harn]

There is a wonderful, in-depth story of a 42 y.o. woman with Stage IV lung cancer who convinced her surgeons and oncologist to pursue aggressive treatment through multiple surgeries at Vanderbilt. The article highlights the benefits and risk/rewards of pursuing unconventional, aggressive treatment. This is an article well worth reading. I don't subscribe to the Wall Street Journal online but if anyone does, please copy it. I am going to email the author my thanks for writing it. Very thought provoking.

Kathy

[Hebbie]

Hi Kathy -- it's so nice to hear from you!!!

What is the date of the article? I think my husband subscribes (he'd better -- he's a stockbroker!!) so I will check with him for the article. Thanks for the heads up!!!

[Elaine]

Yes, I hope someone can paste it here for us.

elaine

[Hebbie]

OK -- my husband's got the subscription -- I just need to know the date the article ran! I will post it if I can!

[niececola]

http://www.mlive.com/newsflash/business ... -financial

Aggressive surgery gives cancer patients a chance

By AMY DOCKSER MARCUS

The Associated Press

6/29/04 8:24 AM

The Wall Street Journal

NASHVILLE, Tenn. -- In September 2001, at the age of 42, Lori Monroe was diagnosed with terminal lung cancer.

The oncologist told her and her husband the cancer was inoperable, and the choice wasn't one treatment or another -- but whether to do any treatment at all.

Ms. Monroe, a nurse, was shocked. A month earlier, she had spent three weeks hiking in the mountains of Colorado. She had just returned from a trip water-skiing with her daughters, Emily and Alyson, who were 13 and 10 at the time. She felt and looked healthy. But her doctor said there was nothing Ms. Monroe could do.

So Ms. Monroe came here to Vanderbilt University, an hour's drive from her home in Bowling Green, Ky., for a second opinion. At first, the doctors told her the same thing. Her cancer was inoperable. But one surgeon who saw her was willing to operate. Ms. Monroe wasn't the typical terminally ill patient, he argued. She was young and had no other health problems. He believed she could survive the rigors of a high-stakes operation. He wanted to be aggressive.

When people are told they have "inoperable" cancer, it doesn't always mean that a surgeon can't remove the tumor. Often the surgeon can but has made a calculation that the risks of the procedure aren't worth the possible benefits. Now, at certain cancer centers, including Vanderbilt, Memorial Sloan-Kettering Cancer Center in New York and University of California, San Francisco Comprehensive Cancer Center, some doctors are arguing that it pays to be aggressive -- trying surgery along with other treatments.

This is still a new approach, and the number of advanced-stage cancer patients who undergo surgery is small. But the idea has the potential to change treatment for terminally ill patients, because it comes at a time when new therapies offer the prospect of prolonging lives. Surgery, the thinking goes, may keep a patient alive long enough to take advantage of drugs and new treatments still being developed.

Ms. Monroe's cancer was diagnosed by chance, while she was in the hospital for a hysterectomy. A chest X-ray showed something her doctor thought might be pneumonia. He prescribed antibiotics. When the condition didn't improve, she was sent for more tests, which found she had the most advanced grade of cancer, called Stage IV.

The standard treatment for her condition is chemotherapy, although it is generally ineffective against the type of lung cancer Ms. Monroe has. If chemotherapy fails, patients are treated for symptoms, such as getting morphine for pain or oxygen to help improve shortness of breath. Surgery is rarely an option.

Ms. Monroe, now 45, saw surgery as her best hope of staying alive for more than a year. The doctors who advised her to do nothing had "already condemned me to death, without giving me a chance to fight," she wrote in her journal shortly after being diagnosed. But she also knew that something could go wrong during surgery that could leave her disabled, in pain, or unable to care for herself or her daughters.

Deciding which cancer patients should be treated aggressively is controversial. According to the National Cancer Institute, someone like Ms. Monroe, whose cancer had spread to both lungs, has a 99 percent chance of being dead within five years of diagnosis, even after surgery.

Ms. Monroe's doctors struggle with whether the chance for extra time is worth a patient's pain and suffering. "Would you operate on someone to get three more weeks of life? Three more months? Two more years?" asks David P. Carbone, 48, Ms. Monroe's current oncologist. "At what point do you draw the line?"

More than 160,000 people in the U.S. are expected to die of lung cancer this year. Treating the disease aggressively represents a significant departure from standard care. In 2001, the National Cancer Institute convened a group of researchers to report on the field; overall, lung cancer has only a 15 percent five-year survival rate. The group found many doctors felt none of the treatment options -- surgery, chemotherapy or radiation -- appeared effective in significantly extending the lives of patients with advanced lung cancer.

"The stigma that lung cancer is a self-inflicted disease, coupled with a pervasive sense of therapeutic nihilism," the report said, "conspire to create a medical environment in which many patients with advanced cancer are not even offered treatment."

That is slowly starting to change. This year, the National Comprehensive Cancer Network, a group of 19 of the world's leading cancer centers, revised its guidelines for treating the most common form of lung cancer. This form, non-small cell lung cancer, which Ms. Monroe has, is usually associated with a history of smoking. She smoked for nine years before quitting when she was 29 and pregnant with Emily.

Under the new guidelines, patients diagnosed with an early stage of the disease are recommended to have surgery to remove the tumor, and then chemotherapy. Patients who failed previous rounds of chemotherapy are advised to try Iressa, a new "targeted" drug, designed to hold a tumor's growth in check.

Researchers at New York's Memorial Sloan-Kettering published a 2002 paper arguing that certain lung-cancer patients appeared to benefit from having their tumors surgically removed, even when their cancer was advanced. The team said that in such cases, if the nodules can be removed, they should be. Some patients they studied improved from zero percent survival to up to 60 percent survival using surgical intervention, the study said.

At Vanderbilt, nodules on Ms. Monroe's right lung were removed and tested. When they turned out to be cancerous, Ms. Monroe's first oncologist presented her case to the hospital's tumor board, which makes recommendations. Surgery wasn't a viable option in this case, the board said, because the cancer had already spread to both lungs.

Ms. Monroe says she couldn't stop weeping at the news. But that evening, Mathew Ninan, 40, the Vanderbilt surgeon who did the exploratory procedure, called her while she was still at the hospital. He said he would go ahead with surgery to remove the tumor, despite the board's recommendation. The final decision is up to the doctor and the patient.

After the board meeting, Dr. Ninan went to the medical library and read over the little available literature on cases like Ms. Monroe's. "I was very clear with her," Dr. Ninan says. "I could not assure her that surgery would change her prognosis. But I did not know for sure that it would not change her prognosis." Through that tiny window of opportunity, he decided to proceed.

The night before her Oct. 12, 2001, surgery, Ms. Monroe spent time with her girls. "They laid around and watched TV and then I fussed at both of them," she wrote in her journal. "I hate that. Time with them is precious right now, but at the same time, I can't let them not do what I need them to ... Still, I felt bad. I'm worried about tomorrow's surgery and I spent my last awake time with them fussing."

Four weeks after she was diagnosed with inoperable cancer, Dr. Ninan removed her lower left lung, including an 8-centimeter tumor. The right lung, doctors decided, could be treated with chemotherapy. Ms. Monroe woke up in intense pain. Her chest and throat felt constricted. "I felt like I was being choked from the inside," she wrote in her journal.

Ms. Monroe has private insurance, and is also covered by Medicare. She says she hasn't experienced any problems with reimbursement from insurance.

For almost a year, her cancer remained stable. She started a chemotherapy regimen in January 2002, and when that finished a few months later, continued to get weekly infusions of an experimental drug designed to stop tumors.

Since the drug was still being tested, the company developing it closely monitored patients. As in most trials, patients who no longer respond to a drug stop receiving it. In October, Ms. Monroe had a CT scan. The drug company felt the scan showed Ms. Monroe's cancer had progressed, making her ineligible for more of the drug.

"I was terrified," Ms. Monroe recalls. "The one thing that was keeping my disease stable had been denied from me. I felt true fear and panicked." She decided she wanted to have surgery again to remove the remaining nodules -- even after the drug company changed its decision and said she could continue on the drug.

Her oncologist, Dr. Carbone, thought the first surgery had probably extended her life. But he was deeply uncertain that another surgery would. "Her disease was stable with the drugs," he says. "Stable disease in lung cancer is a victory." When she argued that surgery was the only way to get the cancer out of her body, Dr. Carbone says he reminded her, "We are way off the beaten track here."

Dr. Carbone had been Ms. Monroe's oncologist for more than a year by this time, and the two had grown close. Dr. Carbone shared with her details of his own battle with cancer. Diagnosed five years ago, with lymphoma in the chest, doctors initially thought he had lung cancer. He had surgery twice, to remove sections of his left lung. He underwent radiation and chemotherapy, finishing treatment in September 1999.

"Our situations were also similar in a personal way," says Dr. Carbone. Ms. Monroe's marriage of 19 years had fallen apart while she was undergoing chemotherapy. Dr. Carbone's marriage of 19 years ended in divorce in 2001. "I can sympathize with the situation she's in," he says.

Despite Dr. Carbone's reservations about surgery, Ms. Monroe was determined to go ahead. In December 2002, she had another operation. It was a success. Doctors told her that, for the time being, she was disease-free. She went back to work as a nurse at the local hospital. She took her daughters camping. She formed a support group for lung-cancer patients. Last year, Dr. Carbone rode 60 miles as part of the Bristol-Myers Squibb "Tour of Hope" with cyclist Lance Armstrong to raise money for cancer research. Dr. Carbone wrote a message on a panel set up at the finish line: "To Lori Monroe, the bravest person I know."

In April of this year, Ms. Monroe came back to Vanderbilt for a routine scan. She says she could tell right away that something was wrong by the sound of her doctor's heavy steps in the hallway. Dr. Carbone was walking slowly, she says, as if he dreaded telling her something. When he got to the office, his face had a bleak expression, she recalls. There appeared to be five new nodules on her left lung, he said.

Dr. Carbone recommended not doing anything for the time being. The tumors appeared to be growing very slowly. "If we didn't know the spots were there, she could probably go years before any symptoms appeared," he argued. By that time, he thought, there could be new drugs or therapies to treat her. Why risk yet another surgery?

There are always potential complications from surgery. But Ms. Monroe had already had portions of each lung removed, raising the stakes even further. Dr. Carbone worried Dr. Ninan, the surgeon, might start cutting and find the cancer had spread, forcing him to cut even more. Ms. Monroe could be left without enough lung tissue to allow for normal breathing. "I don't want to be a pulmonary cripple," she said, as she weighed her options, "unable to walk across the room without being short of breath."

Patients often want to be aggressive, even if it means extending their lives by only a few weeks, says David H. Johnson, deputy director of the Vanderbilt-Ingram Cancer Center. Fifteen years ago, at the age of 41, Dr. Johnson was diagnosed with a cancer of the lymph nodes. He decided to pursue a chemotherapy treatment that was far more toxic than standard care at the time. "I thought my outcome would be better," he says. "Even if it had only 1 percent of 1 percent of a chance of improving my odds of being cured, it was worth it to me."

The treatment worked. But a National Cancer Institute-sponsored clinical trial, started around the same time, found the less-toxic treatment had just as good results, with far fewer side effects. "I was biased, just like many patients are," Dr. Johnson said. "I thought the more aggressive treatment had to be better."

Still, he was ambivalent about whether being aggressive in Ms. Monroe's case was the right choice. He worried her treatment had strayed so far from the mainstream that it was difficult to assess what to do, medically or ethically. "With each step, you go further out into the swamp," Dr. Johnson said. "If you go too far, you can fall through."

That fear ran through the conversation in May, when Ms. Monroe met with her doctors, trying to convince them she should have surgery again. From the outset, she had tried to make her doctors her friends, sending them frequent e-mail messages, sharing details about Emily's cello playing and how Alyson asked her difficult questions about whether she might die. She had gone hiking with Dr. Carbone during a lung-cancer conference. She and Dr. Ninan sometimes had dinner together when she was in town.

Ms. Monroe says she always made a point of looking her best before seeing her doctors. "I want them to look at me and know that I am viable," she said, "that my life is worth saving." On this day, it was hard to tell how seriously ill she was. Toe nails painted bright pink peeked out from sandals. She wore dangling earrings with blue stones that matched her V-neck blouse. Her short brown hair brushed just past her ears. She was quick to smile.

But now, her bond with her doctors made their conversation even more difficult. Ms. Monroe said she'd like to have surgery two days later, on a Wednesday, so that she would have enough time to recover to take her two daughters camping at the end of the month. "Lori, you could have a stroke or a heart attack from surgery," Dr. Carbone warned her. "You could become paraplegic, and then you won't be able to go on that vacation at all," he said. "Surgery is not totally innocuous. Bad things can happen."

At one point, Dr. Carbone left the room to take a phone call. Ms. Monroe turned to Dr. Ninan, the surgeon. "I cannot do nothing," she told him.

"That is not my primary concern," Dr. Ninan responded, his voice somber and measured. "My main issue is, can I help you by doing this?"

When Dr. Carbone came back in the room, he urged Ms. Monroe to wait two months to see how quickly the tumors were growing. She remained adamant about having surgery immediately. Eventually, Dr. Carbone acquiesced, somewhat reluctantly. "I think she can make it through surgery. I just don't know if it's the best decision," he said.

But he had no new drugs to try right now; he estimated it would be a year until new therapies that might help her became available. If surgery offered even a small chance of extending her life until then, he felt he couldn't stop her from pursuing it.

Surgery was scheduled for Friday, May 21. The night before, she wrote an e-mail about what awaited her. "The thing I am dreading the most is the first breath I take when I'm awake enough to know the surgery is over," she wrote. "The pain on this first breath will simply set you on fire, and right away, you know you will have to take another breath, and another, and another."

In some ways, the operation proceeded like the others. A breathing tube was inserted, allowing doctors to ventilate each lung separately. The anesthesiologist then shut off the air to Ms. Monroe's left lung, allowing Dr. Ninan to operate.

Two chest tubes, approximately the size of a garden hose, were also inserted, attached to a suction device that allowed her lung to expand and fluid to drain. But this time, Dr. Ninan had to remove more tissue than he had hoped. The nodules were in places that forced him to take out normal tissue. When Ms. Monroe woke up, there was an eight-inch-long incision in her side.

The chest tubes, usually removed two days after surgery, had to remain in for two weeks. The hospital stay was longer, and more expensive than her previous stays, with a bill of about $80,000.

Every time the doctors turned off the suction device, Ms. Monroe's left lung collapsed. The surgeries had left her with a lung too small to completely fill out the cavity in her body. From her hospital bed, she underwent a painful procedure to try to keep her lung from collapsing. An antibiotic was inserted into the chest tube. It was intended to purposely irritate the sensitive lining of the lung and cause the lung to scar up. Scar tissue, doctors hoped, would help the lung better adhere to her rib cage and not collapse.

While she was recuperating, Dr. Carbone came to see her. No more surgery, he said. Dr. Ninan also came by regularly. He too told her, "I think we have reached the end of the road for this kind of surgery."

Watching Ms. Monroe suffer was upsetting for both doctors. "Lori is my friend and I do not want to harm her," Dr. Ninan said later. "It is a guilt that I carry around." Her doctors may never know if the surgery has actually benefited her. "The hope is that the pain she is enduring is a short-term problem in order to get a long-term benefit," said Dr. Carbone. "But short of magic, predicting how individual patients will do with a particular treatment is impossible."

Given that this surgery resulted in more complications than previous ones, Dr. Ninan knew some people would say he had been too aggressive. "I do not regret it," he said. "At some point, you have to make a decision. When you are dealing with a patient whose case is not standard, these decisions are tough."

For the first time, Ms. Monroe felt something new when she contemplated surgery: doubt. "What have I done?" she wrote in her journal 10 days after surgery. "How much normal tissue did we throw away to take the small cancer?"

Two weeks after the surgery, she was still in the hospital. When she spoke, she sounded short of breath. The pain often woke her up in the middle of the night.

Earlier this month, Ms. Monroe went home. But there was a leak in her left lung. When she moved or took a deep breath, she could hear gurgling from fluid filling the lung cavity. Dr. Ninan was worried about the possibility of infection.

They needed to close the leak in her lung, Dr. Ninan said. One of the possibilities he suggested was an operation, to remove tissue from another part of her body and then use it to try to close the leak.

The idea overwhelmed her, Ms. Monroe says. She knew that if the situation didn't improve in a short time, she might have to consider it. But she had missed saying goodbye to her youngest daughter before Alyson left for camp because of the complications from her last operation. Her daughter was coming home in a few days and she wanted to be there to greet her.

So she did something she thought she would never do. "I said no to surgery," says Ms. Monroe, and she went home to see her children.

------

Poor Prognosis

Five-year survival rates for various cancers, diagnosed from 1995-2000.

Prostate 99.3 percent

Melanoma of the skin 90.7

Breast (female) 88.9

Colon and rectum 64.1

Leukemia 47.8

Brain and other nervous system 32.2

Lung and bronchus 15.4

Source: National Cancer Institute

[dadstimeon]

Intertesting story. Thanks for posting.

[john]

Yes, thanks for the article. It is too bad it never mentioned RFA.

Also it seemed to get some facts wrong. That NSCLC is associated mostly with smoking.

It also failed to mention the fact that more and more LC patients are non-smokers or have never smoked.

I think most non-smokers actually get NSCLC (adeno or BAC) and not SCLC

[john]

Yes, thanks for the article. It is too bad it never mentioned RFA.

Also it seemed to get some facts wrong. That NSCLC is associated mostly with smoking.

It also failed to mention the fact that more and more LC patients are non-smokers or have never smoked.

I think most non-smokers actually get NSCLC (adeno or BAC) and not SCLC

[Harn]

It is in today's (6/29) morning paper on the front page. Try to get a hold of an actual Wall Street Journal because they included photos of her and her two doctors, giving you a picture to relate to of a 42 y.o. woman with lung cancer who didn't smoke since age 25!

John, when I email the author and her editor my thanks for writing this piece I thought I would gently mention that nslc is not typically assoc with smokers,and the significant # of people getting lc who were non-smokers, and then refer her to this board for more clarification.

Kathy

[cathy]

That was pretty aggressive. Interesting though

[john]

Kathy,

I was thinking the same thing. Her email is amy.marcus@wsj.com

John

[Hebbie]

Thanks for posting the e-mail, I sent a "thank you" note myself and have already had a nice reply from her!

[BeckyCW]

Very interesting -- Thanks for posting this!

BeckyCW

[mayos]

Thank you for sharing this story. It's such a startling approach to lung cancer treatment. I wish this young woman the very best of luck.