CHICAGO – Breast cancer patient Julia Rastelli looked shell-shocked this year when her oncologist explained her options now that the tumor had been removed.

There were so many confusing treatment choices. Rastelli, 42, could have chemotherapy or she could choose a less toxic hormonal treatment. If she decided on chemo, there were many possible drug combinations and schedules. Certain aspects of her case suggested that the lumpectomy was enough. But other factors pointed toward a more aggressive approach.

Rastelli perked up when Dr. Kathy Albain opened a computer program called Adjuvant! Online, which depicted probable outcomes for various treatment options in simple bars of color. Now it was easy to see how different treatments would affect her chance of relapsing.

The program is one of many innovative decision aids that are helping cancer patients choose a course of treatment. Many say it is the hardest part of their ordeal, next to learning their tumor is malignant.

Recent advances in understanding cancer have multiplied the numbers of treatment options. But most therapies still have nasty side effects, and they don’t always work.

And even though patients have access to more information than ever, doctors often have less time for counseling.

The situation leaves many patients struggling to understand the costs and benefits of any given treatment. How much benefit are they likely to get in return for losing their hair and feeling sick for several months?

Enter decision aids like Adjuvant! Online, which help translate technical information into terms a patient can more easily understand. The Mayo Clinic has a similar online program called Numeracy that helps explain the risks and benefits of chemotherapy.

There’s also a low-tech “Decision Board” that can help women with early breast cancer choose between mastectomy and lumpectomy, and an online calculator that helps men decide whether to have a biopsy to diagnose prostate cancer, among dozens of others.

All except the board can be accessed by patients on their own, though they are best used in consultation with a doctor.

In Albain’s office, Rastelli watched as the doctor plugged in Rastelli’s age and level of general health, as well as information on her tumor: size, grade and whether it had spread to the lymph nodes. Then she clicked and pointed to a long green bar.

“If we do nothing (after surgery),” said Albain, director of the breast research program at Loyola University Medical Center, “there’s a 74 percent chance you’ll be alive without cancer 10 years from now. There’s a 25 percent chance of relapsing – that’s the red bar – and a 1 percent chance you’ll die of something else.”

According to the program, the red “relapse” bar would shrink by 9 percentage points if Rastelli took tamoxifen, a pill that blocks estrogen from fueling the growth of breast cells. If she also took a state-of-the-art chemotherapy cocktail, she could shrink it by 9 more points.

“Now you’re down from 25 percent to 7 percent chance of relapsing,” the doctor said.

But Albain wasn’t done. As cancer biology advances at the molecular level, researchers are realizing cancer is not a single disease. Some patients have genes that worsen their prognosis or increase the side effects of cancer therapy. Others have tumors that can’t be treated with certain drugs.

So the doctor was able to refine her advice by running a test for 21 genes that predict recurrence. The test, OncotypeDX, found the odds of Rastelli’s cancer coming back and spreading if she didn’t have chemotherapy were bigger than the Adjuvant! program had indicated.

That was the bad news, Albain said. The good news was that Rastelli’s tumor cells contained extra copies of a gene that can be targeted by a medication called Herceptin.

“A decade ago,” Albain told her patient, “I would have said you don’t need any further treatment except maybe tamoxifen. And that would have been true for the average 42-year-old woman with a small, hormone-sensitive, node-negative tumor.

“But we’re now in the era of tailored treatment. We can look at other characteristics of your cancer and come up with an individualized treatment plan that will give you better survival odds.”

Rastelli is nearly finished with her chemo and expects to begin radiation therapy next month. Her three children – Nicholas, 8, Gabriella, 6, and Analisa, 4 – have kept her mind off the cancer and the side effects of the drugs. But she still remembers the decision-making period.

“There was such an overload of information,” she said. “To try to process it all – it was just mind-boggling.”

Dr. Timothy Whelan of McMaster University in Hamilton, Ontario, who developed the Decision Board, said his tool helps doctors outline the treatment options, communicate risks and benefits, and elicit patients’ feelings.

“It provides a vehicle to improve communication,” he said, “and it empowers the patient.”



Not all doctors liked such products at first, especially those who were used to making the patients’ decisions for them, said Dr. Peter Ravdin of the University of Texas in San Antonio, who developed Adjuvant! Online. Originally designed for breast cancer patients, it now has programs for lung and colon cancer too.

But many of those doubters subsequently became believers, Ravdin said.

“Decision-making is stressful. It requires a judgment call,” he said. “It may be nicer to share the burden of the decision with the patient. When the patients are active, informed participants, they feel less stressed – and so do the doctors.”


For Rastelli, individualized treatment meant having to take harsh drugs she once would have avoided.

But Colleen Grember had the opposite experience. Because she was diagnosed earlier, at age 39, Grember ordinarily would have been advised to have chemotherapy. But OncotypeDX showed her tumor was not particularly aggressive, so she decided to go with hormonal treatment alone.

“The test gave me peace of mind,” said Grember, a recruiting manager and mother of two. “I’m taking a risk, but I’m comfortable with it.”


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THE DISEASE:

Scientists now know cancer is not one disease.

What’s commonly called breast cancer is “more like a family of criminals that happen to share the same boarding house,” said Dr. George Sledge, a researcher at Indiana University.

“Some are petty thieves. Some are murderers. You apprehend them differently, and you punish them differently.”

Ultimately, terms like breast cancer or lung cancer will be obsolete because cancers will be named for molecular characteristics, not body parts.

And doctors will have a large number of drugs that target those molecules, instead of a handful of treatments that may or may not work.

“We’ll be able to say to a patient, “You have a Type 23 tumor. It’s ER-positive, HER2-negative, and the cyclin is turned on.’ And we’ll be able to individualize treatment,” Sledge said.

“With bacterial pneumonia, we culture before prescribing an antibiotic,” he said. “We can do that now with breast cancer, and we’ll soon have the capability with other diseases.”

-Judy Peres

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(c) 2006, Chicago Tribune.

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PHOTO (from MCT Photo Service, 202-383-6099): CANCERDECISIONS

AP-NY-12-15-06 0607EST

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