BLOGGERS: MARK SCHOLZ, MD & RALPH H. BLUM

The co-authors of Invasion of the Prostate Snatchers, blog alternate posts weekly. We invite you to post your comments.

Tuesday, July 19, 2011

The Diagnosis: Eight Basic Rules for Coping with Unwelcome News

BY RALPH BLUM

There is no easy way to receive the news that you have cancer, but it is important to realize that prostate cancer is typically not a death sentence. In fact the vast majority of men diagnosed with prostate cancer have the low-risk form of the disease, and will live a normal life span. Even those men diagnosed with the more aggressive kind of prostate cancer have effective treatment options available to them today.

Nevertheless, the psychological impact of receiving a cancer diagnosis can leave you reeling. You’re in shock, disoriented, and filled with fear. As one urologist told me, “Once a patient hears the word ‘cancer,’ most of what I tell him after that won’t be absorbed.”  So when it comes to being an informed patient, here are some basic rules:      

Rule #1: It is critically important to understand clearly your diagnosis and proposed treatment options. So always have your spouse or a friend accompany you to your appointment with the urologist, to take notes and to ask the crucial questions which, in your state of shock, may not occur to you at the time.

Rule #2: Recognize and resist your natural desire to rush into treatment. A combination of the urologist’s preference for surgery and most men’s terrified “just get it out” attitude, leads to tens of thousands of unnecessary radical prostatectomies every year—unnecessary because all of these men would have lived just as long without surgery, without the risk of losing both potency and normal urinary function and greatly compromising their quality of life.

Rule #3: Do not to waste your energy asking yourself, “How did this happen? Did I bring this on myself?” Regardless of your eating habits, exercise regime, or anything else that might contribute to getting this disease—you did not cause it. Prostate cancer is incredibly common. Like diminished sight and hearing, for many of us it comes with advancing age.  In the words of one well-known prostate oncologist, “If you are over seventy, and you don’t have prostate cancer, chances are you’re a woman.”

Rule #4: Be proactive. The days of the passive patient with a “Whatever-you-say-Doc” attitude are over. When it comes to obtaining the best care and treatment, the single most influential decision maker is you.  Do your own research, and become totally involved with your doctor in the decision-making process. And remember: this is the tortoise of all cancers. In most cases, time is on your side. So take whatever time you need to educate yourself. Learn what questions to ask your doctor about all your treatment options. Make sure you are aware of their short-term and long-term side effects.

Rule #5: Attend prostate cancer support groups. The leaders of many of these groups have dedicated countless hours to research; they are a fund of valuable information about different treatment options. Equally important, they are a trustworthy resource for locating the best doctors in your area. It can also be helpful to talk with men who have successfully navigated the medical minefield of prostate cancer. Never forget: every cancer case is different; what worked for other men may not be the right treatment for you.                                                          

Rule #6: Stay calm, be cool. Beware of terrifying yourself by thinking that every negative aspect of this disease applies to you. The very process of gathering the information you need to make an informed decision can be scary as hell. Do not be panicked by all the numerical tables, statistics, and graphs. Statistics measure populations; they do not apply to individuals. Statistics and pathology reports only tell part of the story. What is missing is the influence exerted by all the variables and intangibles that make you an individual.

Rule #7: Prostate cancer is a complex disease with many treatment options. So be prepared to take conflicting opinions from reputable experts in your stride. I have yet to encounter two urologists who agreed on everything. Which is why you need to trust your own instincts in determining which doctor and, if called for, which treatment is right for you.

Rule #8: Get a second opinion. Even if you are satisfied with your urologist, it is vitally important to get a second opinion, preferably from an independent board-certified medical oncologist—a cancer specialist—and if possible, an oncologist with a specialty in prostate cancer. Obtaining a second opinion doesn’t imply that you don’t trust your doctor. On a decision this important, you owe yourself the benefit of more than one person’s thinking.

Finding an oncologist is a cinch. Finding the right oncologist may require traveling to a major cancer center to talk with a leading edge specialist. Insurance will almost always cover the cost of a second opinion. You will need to take with you a complete transcript of your medical records, including all pathology reports and slides. And in order to get the best out of your appointment, take a written list of questions. And a friend. And a tape reorder.

Finally, I have to say it again: If you have just been diagnosed with prostate cancer, resist the impulse to rush into radical treatment that is quite possibly unnecessary and almost guaranteed to adversely affect the quality of the rest of your life. But if you do decide that your cancer calls for immediate treatment, have absolute belief in the effectiveness of the treatment you choose.

1 comment:

Anonymous said...

this is the best advice a man could possibly receive when it comes down to "what do I do now?" We were fortunate to discover this book four days before my husband was scheduled for robotic surgery (PSA 6.6 gleason 6 3.1 cores out of 13)

we had gone from diagnosis to surgery decision in a matter of days.

We canceled and are now working with a medical oncologist, instead of just a surgeon.

It is critical to STOP and really think about what you are doing before rushing into a life altering surgery, especially since it is not a matter of whether your life will be altered, but how much.

Thank you so much for making this information available.