I’ve Been Diagnosed with Prostate Cancer
A diagnosis of prostate cancer was made. At the time of your routine annual physical examination, suspicion was raised either because of an elevation in your serum prostate-specific antigen (PSA) level or an abnormality of the prostate noted by digital rectal examination. No doubt, this is an emotional shock. At the same time, the diagnosis might not seem all that surprising based on population studies that suggest that the current risk of diagnosis of prostate cancer approximates 1 in 6 men in the United States. Prostate cancer is the most commonly diagnosed malignancy among men in the United States, with approximately 200,000 diagnoses a year and approximately 30,000 deaths annually. The numbers are all the more daunting for black men, who have a 40% higher risk of the disease and twice the rate of death from it. According to current statistics, approximately 1 in 38 men will die from prostate cancer. On a positive note, the mortality rate associated with this disease has declined over the past decade.
The reduced mortality is associated with various factors, including screening efforts leading to earlier detection and advances in life-saving therapeutic approaches.
Multiple controversies surround the diagnosis of prostate cancer. With better detection, the prevalence of prostate cancer has risen, though in up to 50 percent of men, it may not be life threatening and require active treatment. Thus, a logical question is whether all prostate cancer is deadly?
Another is whether active treatment may carry more hazards, such as side effects that hamper quality of life, than the threat of this disease? Today, treatment decisions must take into account a careful understanding of the risk profile of the diagnosis in each man as well as issues regarding his overall health status and life expectancy. A variety of treatments exist, but choice of intervention - from surgery to active surveillance - will differ among patients. Certainly, you may have heard about many of these controversies, which likely adds to your anxiety and fear. The stress may be further heightened because of the idea today that patients should assume a more active role in the decision-making process for managing their disease.
How to select your oncology team and medical center
It is well documented that the best outcomes associated with prostate cancer management are related to the qualifications of your treating physicians and medical center. It makes sense to consider a medical center for your management that has a high level commitment to prostate cancer management and that provides a diversity of personnel and resources dedicated to patients with prostate cancer.
The facility may be a referral center separate from where your prostate cancer diagnosis was made under the care of your original urologist. This facility may include a urologic surgeon with expertise in prostate cancer, radiation oncologist, medical oncologist, prostate pathologist, prostate imaging radiologist, genetics counselors, oncology nurses, and a psychosocial support staff for patients diagnosed with prostate cancer. There should be interaction between all these specialists in the form of interdisciplinary conferences and tumor boards, during which the latest developments in management of both common and complicated cases are discussed. Such a center offers the very latest and best treatments that have been established through rigorous studies as well as the option to be involved in active clinical trials forecasting new therapies.
Learning about your disease before the first visit
It is important to know that prostate cancer does not always carry the death sentence that it once did. Because of the routine use of PSA testing, prostate cancer is often found very early, and it is estimated that many men may have as much as a 10-year advance notice of the disease. To appreciate this concept further, consider that today 1 in 20 men presenting with prostate cancer diagnoses have distant metastases, compared with the rate of 1 in 3 men who presented with the disease in 1982. This “lead time effect” enables early action. Of course, it also raises challenges for considering whether the diagnosis always merits active treatment that may carry risks (see previous discussion).
Nonetheless, having an early start by knowing you have the diagnosis may be the best position to be in so that you and your doctors can plan for the very best outcome.
GATHERING RECORDS: BIOPSY, LABS, RADIOLOGY REPORTS
In preparing for another consultation, it is important to collect your medical records and other pertinent information to bring with you for your consultation. These records should specifically assist in the evaluation of your prostate cancer risk profile. However, other records may also be helpful for the evaluation of your overall health status that may affect the best recommendation. Regarding prostate health records, serial PSA testing over many years may have been done, and results showing the trend in these measurements could be very helpful. The prostate biopsy report detailing specifics about the biopsy findings should be copied and brought. Specific information from the biopsy includes the number of biopsy cores obtained, the locations of biopsy cores containing cancer within the prostate, the percentage of cancer within each biopsy core, and the determination of Gleason score (a grading system that defines the appearance of the cancerous tissue).
For many centers, the actual biopsy slides containing your tissue are requested for first-hand review by pathologists at the medical center to render an independent evaluation of your prostate cancer. Sending these slides in advance for pathologic review or having them on hand with you during the initial consultation can be very helpful to move along the pathologic review process. Additionally, reports of any imaging studies such as bone scan, CAT scan, or MRI may be shown. In the past, these additional imaging studies were frequently ordered, but today they are not commonly done in men with an early diagnosis and evidence of only localized disease. Medical records from your previous urologic consultations can also be very helpful, particularly to review any initial treatments that you may have received. Knowing what has already been done for your prostate cancer may affect further decisions regarding management. Brief summaries of your overall medical conditions are also useful. Your doctors will want to take into account your other health problems so they can recommend the best treatment for your prostate cancer. As stated earlier, the natural history of prostate cancer can be long and drawn out. For many men, their other medical conditions will have a greater effect on their health and longevity than will their prostate cancer diagnosis. In these men, less urgent or aggressive prostate cancer management may be the most appropriate course. It is important to avoid implementing major interventions when they may be unnecessary.