Survivors of cancer and heart disease tell how clinical PET changed the direction of their diagnosis and therapy

-- by Charles Bankhead

To many physicians?even some radiologists?positron emission tomography is still a technical and clinical curiosity, a high-tech gadget in search of clinical acceptance. But for a growing list of healthcare consumers, clinical PET has already proved its worth. In their cases, PET provided a diagnosis that set their treatment plan in motion or refined the precision of its application. With increasing regularity, clinical PET studies have changed diagnoses and therapies, and, in some instances, appear to have saved lives.

Last year, a panel of people whose lives had been dramatically altered by their experience with clinical PET testified at a town hall meeting sponsored by the Health Care Financing Administration, the federal agency that manages Medicare and governs its reimbursement policies. Their testimony and subsequent conversations with Diagnostic Imaging illuminate the potential that advanced imaging modalities hold to extend and enrich the lives of people fortunate enough to have access to them. We tell five of these stories in the text that follows.

KIM PIERCE

Kim Pierce knew something wasn't right, no matter what the mammograms, sonograms, and doctors said. She had an unmistakable lump in her breast. Her doctors agreed, but the imaging studies showed nothing amiss.

"For two years I complained about a lump I had found in my breast," said Pierce, now an administrator in the department of molecular medicine at the University of California, Los Angeles. "The people at the breast center in San Diego said they would watch it, but they thought it was nothing. I had four mammograms and two sonograms in that time, and nothing showed up."

Recruited to a U.S. Department of Energy position at UCLA, Pierce had another mammogram and another sonogram, both of which showed no evidence of a suspicious lesion. Her new physician shared her concern about the palpable lump, however, and recommended a biopsy.

"I mentioned the situation to my boss at the DOE lab, and he suggested that I get a PET scan," Pierce said. "I had never heard of PET. My boss told me about how it actually measured biology and was totally different from other imaging studies. This was in 1991, and PET wasn't being used clinically for cancer. I went into a research protocol and had a PET scan. Sure enough, the lump lit up like a Christmas tree and it was huge."

A biopsy revealed an infiltrating lobular carcinoma. Pierce subsequently had a double mastectomy.

"Given the type of cancer I had, the chances were good that I would have gotten it on the other side within two years," she said.

Today, almost a decade after her PET scan, Pearce is convinced the scan is the reason she is alive.

"If I had stayed in San Diego and continued to listen to people who wanted to watch and wait, I would be dead now," she said. "Part of the problem is that mammography does not pick up lobular or infiltrating lobular breast cancer. It also was not picked up on the sonogram, which was very disconcerting to me. Realistically, PET saved my life.

"No one is going to use PET for breast cancer screening, because it is too expensive," she added. "The issue for me was that when nothing else picked up my breast cancer, there was another alternative."

Since the experience, Pierce has become actively involved in advocacy groups for breast cancer and PET imaging. She is convinced her case is not an isolated one. An acquaintance at UCLA also had breast cancer, she said, and after initial therapy, follow-up laboratory tests showed a rising cancer antigen concentration.

"Her oncologist said she probably had metastatic disease," Pierce said. "CT and MRI showed nothing to indicate she had metastatic disease, yet her oncologist knew something was wrong. She finally talked her doctors into letting her have a PET scan, and it showed she had recurrence in the same breast. That's a whole different story from metastatic disease.

"The issue that I have tried to impress on people is that all cancer is curable if you get to it early enough, but you can't cure it if you can't see it," she said. "I think a lot of women who are diagnosed with a stage I breast cancer and maybe three to four years later have metastatic disease probably never had stage I cancer. If they really had stage II or III, they would have been treated differently and the outcome probably would have been different."

The mother of two grown daughters, Pierce said her close call with breast cancer has given her a new appreciation for life and for the things that matter to her. An employee of the UC system for more than 30 years, she travels extensively for pleasure and enjoys outdoor activities and physical fitness.

"Breast cancer absolutely changed my life, and PET imaging played a big role in that change," she said.

ROBERT YOUNG

At age 44, Robert Young was living the American dream. Life was sweet at work, where he ran a successful marketing agency, and at home in the western suburbs of Los Angeles, where he lived contentedly with his wife and two sons.

The first jolt in what became a major life crisis came when Young's brother died of liver cancer. Three months after the funeral, Young invested in a PET scan as part of a routine physical exam to make sure he was not destined to follow this brother's path. The PET exam indicated that Young had already taken the first fateful steps in that direction. It uncovered multiple colonic polyps and a growth indicative of cancer.

"Had it not been for that one test, maybe I would not be here today. I owe my life to timely treatment and detection," he said.

After surgery, chemotherapy, and radiation, the doctors wanted to perform a follow-up CT scan to see how successful they had been in treating the cancer, but Young insisted on another PET scan, although his oncologist disagreed and said that it would just produce too much information.

Again the decision to make a personal investment in a technology slightly outside accepted medical practice paid off. The follow-up PET exam found that therapy had eliminated all traces of the disease. The scan saved Young from a needle biopsy that was under consideration.

Young's frustration with medical practitioners who did not seem to understand the importance of PET to his recovery led him to adopt the promotion of PET as a personal mission. At least 20 people have received PET scans because of his encouragement.

"As I see it, more people will demand PET scans as awareness grows, unless the medical community and insurance companies wise up on their own," he said.

RAY LUNT

Unlike most patients, Dr. Ray Lunt had an intimate understanding of PET technology and what to expect from a PET scan. As director of nuclear medicine and radiation biology at UCLA, Lunt played an instrumental role in the acquisition of the university cyclotron and the development of PET technology.

Now retired, the 79-year-old Lunt had already had two PET scans when he decided to have another in June 1997.

"There was no particular reason. I had no symptoms or signs of health problems, and my two previous PET scans had shown nothing to indicate I had a problem," he said. "I just thought it would be a good idea to have a PET scan of my heart every two or three years."

In contrast to his two previous cans, the 1997 PET imaging study was hardly routine or uneventful. The scan revealed five significant blockages in his coronary arteries, one of which his personal physician considered life-threatening.

"I remember that my physician called me at home over the weekend and told me what the scan showed and said I should stay in bed and rest as much as possible and then come to see him first thing Monday morning," Lunt said.

When he arrived at the doctor's office, a cardiologist and surgeon were waiting, along with Lunt's personal physician. The options they presented left him with no question about what needed to be done.

"The cardiologist said he might be able to keep me alive for 10 days if I took medication and got plenty of rest," said Lunt. "The cardiologist and the surgeon both encouraged me to have coronary bypass surgery as soon as possible, and that's what I decided to do."

The speed with which the coronary artery blockages revealed by the PET scan had developed suggested particularly aggressive disease, whose treatment should not be put off. Lunt canceled a planned trip and had bypass surgery within days of receiving the PET results.

"I had a stress test a couple of years before, and I came through that just fine," he said. "I didn't have a clue that I had such a serious problem. If I had waited for two or three weeks, until my trip was over, I might not have been alive."

Always physically active, Lunt resumed many of his usual activities six weeks after the surgery, including his regular handball matches with friends. His longtime handball partner recently decided to hang up the gloves, but Lunt is not ready to follow suit and is searching for a new partner to challenge his skills.

"I've played handball for about 40 years, and my doctor has encouraged me to continue playing for as long as I want," he said.

Married and the father of three grown children, Lunt remains an emeritus faculty member at UCLA and stays in touch with friends and colleagues at the university. He also remains keenly aware of the impact that a technology he helped develop has had on his life.

"I have absolutely no doubt that I am alive today because of that PET scan," he said.

RITA ROVAZZI

Long-time smoker Rita Rovazzi had just received the news that every smoker hopes never to hear: She had a lesion on her lung.

X-rays and CT both indicated cancer. Her physicians told her she had two options: undergo a lung biopsy or wait and see what would happen to the spot on her lung. Neither option appealed to Rovazzi, a retiree living in Little Falls, NY.

"The biopsy would have been an invasive procedure, so I just sort of let that ride," she said. "I have emphysema and osteoporosis, and I've had a hip fracture, so I wasn't a good candidate for surgery then, and I'm still not. I didn't like the idea of just waiting, either; I was uncomfortable with not knowing for sure what I was dealing with."

The mother of four daughters and a son, Rovazzi paid a visit to a daughter who is a nuclear medicine physicist in New Jersey. The daughter insisted that Rovazzi have a PET scan, which often can distinguish malignancies from benign lesions when other imaging modalities cannot.

When Rovazzi confronted her decision in 1998, Medicare did not cover PET imaging. After hearing the pros and cons of the study, she decided to pay the $2400 cost of the scan herself, on the chance it would give her the peace of mind she wanted about not pursuing an invasive procedure.

"I really didn't know what else to do," she said. "Everything sort of came together all at once in a matter of a few weeks, and when I heard that a PET scan might tell me for sure what the spot on my lung was, without the need for an invasive procedure, I decided that's for me."

Rovazzi had the scan at Columbia-Presbyterian Medical Center in New York, and it showed that the lesion on her lung was not cancerous.

"The other imaging studies didn't tell me anything," she said. "As a result of the PET scan, I am much more relaxed. Beforehand, I was extremely anxious because I didn't know what to do. The biggest impact of the scan was to give me peace of mind. It might have cost a sizable sum, but what are you weighing that against? It's hard to put a price on peace of mind, and I feel it was a good investment.

"The scan itself was a very relaxing experience. I'd encourage anyone who isn't sure about a diagnosis to have a PET scan. I wouldn't hesitate to have another one."

DAN HUTCHINSON

In the midst of what might be considered the best years of his life, Dan Hutchinson's world turned topsy-turvy with the news that he had Hodgkin's disease. Complicating his particular situation, Hutchinson had a suspicious spot on his right lung. The primary disease was in the lymph node on the left side of his neck.

"Everyone pretty much ruled out an appearance of Hodgkin's in my right lung because it was clear below the diaphragm on the right side, and Hodgkin's disease always runs unilaterally down one side of the body or the other," said Hutchinson, a lawyer by training and currently in semi-retirement with thoughts of becoming a writer.

Multiple CT scans failed to provide evidence that the shadowing on his right lung was Hodgkin's disease. Nonetheless, Hutchinson had nagging doubts, despite assurances from his doctors. With strong encouragement from Hutchinson, his oncologist decided to request a PET scan to make absolutely sure what he was dealing with before starting treatment. Hutchinson was about to start radiation therapy when he had the scan.

Not unlike other cancer patients' experiences, the lesion in his right lung "lit up like a beacon" on the PET scan, he said.

"(The scan) obviously changed the disease staging and the treatment plan," he added. "It made a huge difference in the course of my treatment, a really dramatic effect from a clinical perspective. If my treatment had gone forward on the basis of what the CT scans showed, the radiation therapy would have not done anything for the disease in my lung. If left untreated, the Hodgkin's in my lung would have spread."

The experience has also had a dramatic effect on his personal life. Once a very career-oriented person who worked in the sponsored research office at UCLA, Hutchinson has retired for the time being to Palm Springs, CA.

"The experience has made me focus more on my personal life, especially my three children," he said. "I just spend more time enjoying life. After an experience like this, you tend to see life from a different perspective. I was already going in that direction, but this sort of accelerated the process. It made me stop and think about what I really wanted to do with the rest of my life."

A large part of his introspection has involved consideration of writing a book. During a hiking trip, he met someone who shared his interest in psychology and personal development and growth, and the two began to correspond by e-mail.

"We've put together hundreds and hundreds of pages of e-mail," Hutchinson said. "Out of that came the idea that we might have something we could share with other people. We showed our writings to a publisher and have been asked to submit a proposal for a book."

The experience has also taught Hutchinson lessons about difficult decisions that confront physicians and their patients.

"My primary physician is a highly regarded oncologist, and even though he was certain the spot on my right lung was not Hodgkin's disease, he put my well-being first and let me have the PET scan," Hutchinson said. "That's important. I know that everyone has to exercise common sense and you can't always have all the diagnostic or treatment modalities that might be available. But in my case, I am glad my doctors went ahead and did the PET scan, despite the additional cost, because it likely saved my life."

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