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PROSTATE CANCER OUTCOMES STUDY : A NATIONAL STUDY

Prostate Cancer Outcomes Study News [2001]
Results Receive Widespread Attention

Important findings from the Prostate Cancer Outcomes Study (PCOS) have been presented in medical meetings and journals over the past several months. This has led to extensive coverage in major newspapers across the United States and network news broadcasts. In this newsletter, we have summarized some of these results and share ideas for future research.

Fortunately, these days there are a variety of treatments for prostate cancer. Yet, little is known about how the diagnosis and choices of treatment of the disease can affect various aspects of men's daily lives over the months and years to follow. In PCOS, the men themselves have provided this information.

About 3,500 men from around the United States who had prostate cancer in the mid 1990s have participated. These volunteers have contributed a wealth of new information on life after prostate cancer that will be of benefit to men, their families, and their doctors in making informed choices about treatment alternatives in the future.

PCOS STUDY MAY HELP EASE DIFFICULT CHOICES

The uneasy choice confronts thousands of men diagnosed with prostate cancer each year: Is surgery a better treatment, or is radiation the way to go? How about watchful waiting?Among patients whose cancer is confined to the prostate, both radiation and surgery leave patients with a comparable, favorable outlook for recovery, so patients may wish to consider other issues when deciding on treatment.

In October 2000, results from the PCOS were published in which the effects of surgery to remove the prostate were compared with those of radiation therapy.* The 1,156 men diagnosed between ages 55-74 with localized prostate cancer who chose surgery were compared with 435 men who chose radiation treatment. After 2 years, 80 percent of those who chose surgery had lost sexual function (were impotent) as compared to 62 percent of those who received radiation. Among those who had surgery, 10 percent had difficulty holding their urine (urinary incontinence) as compared with 4 percent in the radiation group. On the other hand, the men who had radiation had more difficulty controlling their bowels, although this often improved within a few months.

Some of the men who had surgery recovered some of their urinary and sexual function in the second year after treatment, although the men who received radiation did not report this.

Otherwise, no clear difference was found in the overall physical health of the men in the two groups.

Similarly, their emotional and mental health was not different.

Thus, while many men experienced long-term side effects from their cancer treatment, 81 percent of the men who had surgery and 90 percent of the men who had radiation said that they were satisfied with their treatment decision. And if given the option to go back in time, 92 percent of all of the men said that they would make the same decision again.

*Reference: Health outcomes after radical prostatectomy or radiotherapy for clinically localized prostate cancer: Results from the Prostate Cancer Outcomes Study (PCOS), J Natl Cancer Inst 20092:1582-92.

STUDY ON GENETIC FACTORS AND PROGRESSION OF PROSTATE CANCER FUNDED

A pilot study to learn more about how genetic factors may be related to prostate cancer progression has been funded by the National Cancer Institute. Tumor tissue from PCOS participants in three registries will be used in the study. It would be very helpful to have more information that could be used to predict which cancers may spread outside the prostate. This study may provide some clues.

Percent Distribution of Type of Initial Therapy Received by Men with Localized
Prostate Cancer by Age at Diagnosis: PCOS Study
[GRAPH]

INFORMATION ON PCOS Is Now ON A WEB SITE
http://www-dccps.ims.nci.nih.gov/ARP/PCOS/index.html

This is the Web site for the PCOS that includes information on the history and goals of the study, background information about prostate cancer, general information about the patients included, how the information was collected, a listing of publications from the study, and other sources of information about prostate cancer.

This is some of the information from the Web site:

History: PCOS was initiated in 1994 by researchers at the National Cancer Institute to look at the impact that treatments for primary prostate cancer have on the quality of life of men living with prostate cancer.

Background: In 2000, an estimated 180,400 men were diagnosed with prostate cancer and an estimated 31,900 died of the disease.

Patient Population: About 3,500 men are participating in the study. Eighty-eight percent of the men were diagnosed with localized disease. Forty-two percent were treated with radical prostatectomy, 24 percent with radiotherapy, 13 percent with hormone therapy, and 22 percent were not treated.

Results/Publications: Six articles have already appeared in medical journals and two more have been accepted for publication. Several more are in progress.

OTHER RESEARCH RESULTS

This is a brief summary of other reports of research results from PCOS that have been published or are soon to be published in medical journals.

How the study was conducted:
Prostate cancer practice patterns and quality of life: The Prostate Cancer Outcomes Study, J Natl Cancer Inst 1999;91:1719-24. (This article describes how the study was conducted.)

Validation study of retrospective recall of disease-targeted function: Results from the Prostate Cancer Outcomes Study, Medical Care 2000;38:847-57. (This article describes how consistent men's responses were about their function at the time they were diagnosed.)

Information about men receiving specific therapies:
Urinary and sexual function after radical prostatectomy for clinically localized prostate cancer The Prostate Cancer Outcomes Study, JAMA 2000;283:354-60. (This article focuses on the group of men who received surgery.)

Health outcomes after radiation therapy for clinically localized cancer: Results from the Prostate Cancer Outcomes Study, J Clin Oncol 2001; accepted for publication. (This article focuses on the group of men who received radiation therapy.)

Ethnic differences:
Ethnic and racial differences in advanced stage prostate cancer: The Prostate Cancer Outcomes Study, J Natl Cancer Inst 2001 ; accepted for publication. (This article reports that prostate cancer was more likely to have spread beyond the prostate in African-American men at the time they were diagnosed in comparison to Hispanics and whites. This finding could not be explained by socioeconomic or clinical factors.)

Use of medical record information:
In addition to the survey responses that men have provided about how their lives have been affected after being diagnosed and treated for prostate cancer, many men also gave permission to obtain their medical record information. This information has been used in two important publications from the study.

Predicting extracapsular extension of prostate cancer in men treated with radical prostatectomy: Results from the population-based Prostate Cancer Outcomes Study, J Urol 1999;162:1342-5. (This study found that factors that could be used to predict metastasis included a high level of PSA, a high Gleason score, and age greater than 70.)

The positive yield of imaging studies in the evaluation of men with newly diagnosed prostate cancer: A population-based analysis, J Urol 2000; 163:1138-43. (It was found that a low percentage of bone scans were positive if the PSA was less than 20 or if the Gleason score was less than 6.)

FUTURE PLANS FOR PCOS: KEEPING IN TOUCH

We will continue to keep you informed about the progress of the study and the information being learned from it.

We want to thank you again for your participation in the study. It is only from men like you that we can learn about the effects of prostate cancer and of its treatment on daily life.

We will be reporting on the results from the 5-year survey that many of you recently completed. We want very much to stay in touch with you and plan to send you another survey in a couple of years. If you move or have moved, please call and tell us your new address. The contact numbers for each study area are listed on the back page.

CANCER REGISTRIES PARTICIPATING

Cancer Surveillance System,
Fred Hutchinson Cancer Research Center, Seattle, WA
(Dr. Janet Stanford, 206-667-4738.
For address changes and questions, call Terri Watson at 206-667-4738.)

Connecticut Tumor Registry,
Department of Public Health, Hartford, CT
(Dr. Peter Albertsen, 860-679-3430.
For address changes and questions, call Judie Fine at 860-679-3366.)

Georgia Center for Cancer Statistics,
Rollins School of Public Health at Emory University, Atlanta, GA
(Dr. William Eley, 404-727-4335.
For address changes and questions, call Gerrie Claxton at 404-727-3617.)

Los Angeles County Cancer Surveillance Program,
Los Angeles, CA
(Dr. Ann Hamilton, 323-865-0434, Dr. Dennis Deapen, 323-442-1574, and Dr. Frank Gilliland, 323-442-1309.
For address changes and questions, call Yvonne Paredes at 323-442-2712.)

New Mexico Tumor Registry,
University of New Mexico School of Medicine, Albuquerque, NM
(Dr. Richard Hoffman, 1-505-256-2727.
For address changes and questions, call Noell Stone, MPH, at 505-272-8807 or 1-800-303-4503.)

Utah Cancer Registry,
University of Utah, Salt Lake City, UT
(Dr. Robert Stephenson, Dr. Charles Smart, and Dr. Charles Wiggins, 801-581-8407.
For address changes and questions, call Belinda Taylor at 801-581-8407.)


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