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Terra Infirma

Can bone-marrow transplants save breast-cancer patients? There's little middle ground in the debateand lots of uncharted territory.

When she learned of the transplant studies, Cortez was devastated. "I want to know--where did University Hospital get those figures they were giving me?" she asks. "I was in radiation when I heard the results of those studies on the NBC Nightly News. I talked to the radiation oncologist. She said she had always thought the numbers of 70 to 80 percent [disease-free survival for some high risk patients] were inflated, just given what she was seeing in her practice. But she also said that she felt that those studies were so generalized that, very likely, given the extreme aggressiveness of my particular cancer, I might be in a group of women who would benefit from transplant."

Cortez is still glad she had the treatment--and grateful she doesn't have to make the decision now, because "it's not as clear-cut and hopeful as everyone had thought. It's sad and scary to think that it might not help me and that I went through what I went through--all of us did--for no real reason.

"Maybe part of the problem is our culture, that we think we have the right to those kinds of answers. It's easier to believe the doctors than to face your own mortality."

Pat Nettles does have to make the decision now. She's currently in remission and, after years of surgeries, treatments, invasive tests and ambiguous symptoms, she's eager to rest. But if a transplant is to help her, it should take place immediately, before there's any sign of returning disease, and she's heard from her New York doctors that the University of Colorado is considered "a center of excellence" for the procedure. "I'm not wild about the toxicity and the invasiveness of it," Nettles says. "One doctor I talked to likened it to dropping a napalm bomb. It's a really tough decision."

But Dr. Roy Jones has no doubts about the value of his work. "There's a broad and rich literature that shows that for many kinds of drugs, the more you give, the more cancer you kill," he says, adding that his statistics come from thirty to forty years of experience and from twenty to thirty centers that have compiled data on thousands of women. They show that where metastasis is widespread, high-dose chemo has a 20 percent chance of eradicating all signs of cancer for five years. If there is metastasis to only one site, the rate goes up to 50 percent. For an aggressive localized tumor, the patient's chances of five disease-free years go from 20 to 70 percent.

These are not abstract numbers to Vicki Tosher, director of the Colorado Breast Cancer Coalition, who falls into the latter group. She was diagnosed in May 1991 and was one of the first patients at Presbyterian/St. Luke's to have stem-cell therapy. The experience was less traumatic than she'd feared, she remembers. She was given liberal amounts of medication to counter her symptoms, as well as drugs that induced amnesia. The staff was warm and supportive. But she did feel some trepidation when she saw the large bags of drugs she was to be given. "You go to the doctor's office for chemo and you get a vial, a syringe," she notes. "Well, this is a big bag and it drips into your body for hours. Perry--my significant other--that was when he flipped out, seeing them hang bags of chemotherapy. He said, 'I knew that if I was going to lose you, that was when it was going to happen.'"

At one point, just before receiving her drugs, Tosher had a dream in which inanimate objects turned animate and "rocks became birds and flew away." When she woke up in the morning, she says, "an incredible sense of calm had come over me. I knew that whatever happened, live or die, it was going to be okay."

Because Tosher has talked to many women who have had transplants, she has questions about the validity of those studies. Some of the women received different drugs from those she was given, or they had the same drugs at different dosages. She knows the treatment she got in 1991 was based on studies that had begun many years earlier and that current treatment is shaped by trends and figures that have since evolved. Conventional chemotherapy has changed, too. So when a researcher says that in his study, this group of women did or didn't do better than that group, what exactly were the women taking, and do those numbers still have relevance?

"We reinvent ourselves every three years," says Jones. "I take the heretical position that these random trials are obsolete. They're considered the gold standard, but they're a bankrupt way to evaluate treatment."

Jones believes the studies were released prematurely: The time frames involved are too short, since many of the women have been followed for fewer than three years. Most women with metastatic or advanced breast cancer will live that long no matter which treatment they choose; whether or not transplant prolongs life will become clear only four, five or six years later.

"In my opinion, ASCO decided to make a big splash at the meeting," Jones says. "A big media splash. A number of authors--including my wife--were not given the opportunity to review the data before it was scheduled for publication. There was a rush to judgment. I'm pretty confident what the trial will show, but it's going to take three more years to show it. It's too early."

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