The Way to Find the Best Available Treatment for Your PC: Advice for Men Newly Diagnosed with Prostate Cancer
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PCRI Insights August, 2004 vol. 7, no. 3
By Mark Scholz, M.D., Prostate Oncology Specialists

You mean you’ve never heard of spectroscopy being used in prostate cancer staging?” Don, a recently diagnosed prostate cancer (PC) patient, was astonished to learn that the doctor treating him was unaware of this application of this new technology. Don had been doing his own research on the Internet about MRI scanning of the prostate. And he came across information about this new enhancement to MRI that improves the doctor’s ability to localize the cancer within the prostate gland.

Newly diagnosed PC patients who face this situation are understandably surprised and upset when faced with the realization that there is medical information relevant to their treatment that their doctor is totally unfamiliar with. Actually this is not so surprising when we consider the explosive growth rate of new medical information. After all, how can one doctor, whether a General Practitioner or a specialist such as a urologist, a medical oncologist, or a radiation oncologist, be an all-knowing expert for such a large number of diseases and treatments? Consider the plight of urologists, for example. Even though they specialize “narrowly” in diseases of the urinary system, their area of responsibility demands expertise in a wide variety of unrelated but important areas such as infections, kidney stones, congenital defects, sexual dysfunction, corrective surgery, and a variety of cancers. The genitourinary system alone is subject to more than 20 different varieties of cancer (kidney, bladder, testicular, etc.). And for each of these 20 varieties, treatment has to be customized according to the unique grade and stage each patient manifests.

Staging the Cancer

And yet, you would think that treatment for a common problem like PC would be straightforward. After the cancer is staged, it may seem reasonable to you that your doctor should be able suggest appropriate treatment options in an unbiased and understandable way. Unfortunately, there are a number of complicating factors.

To begin with, even when the best technology is brought to bear, the true stage of the cancer can only be estimated and described in terms of percentages. The present state of the art for staging uses computerized algorithms and nomograms (see Insights, May 2001) for profiling, or to estimate the likelihood of microscopic spread (termed metastasis) of the disease outside the prostate to another area of the body. These computerized calculations are developed from clinical follow-up studies done on hundreds, sometimes thousands of men. They are based on excellent science, but their purpose is to dictate probabilities, not absolutes, and should be understood as such.

One of the primary functions of computerized calculations is to show the likelihood of microscopic metastases, or micromets. It is important to know when metastases are present because if they are, cure with local therapies such as radiation or surgery is no longer possible. The problem is that metastases, if they are present, can be microscopic, and therefore invisible to even our best technology. Their presence or absence can only be scientifically estimated from the size, grade, and location, of the primary tumor in the prostate gland.

Accurate information about the primary tumor then is clearly important, and initial information is obtained indirectly from blood tests (PSA), Transrectal ultrasound (TRUS), and biopsy results. However, these factors only provide estimates of the tumor size. So we are using estimates based on estimates to guide newly diagnosed men in their treatment decisions.

Newer scanning techniques attempting to “ see” the size of the cancer within the prostate gland are growing in use in research protocols or in university settings, but they are still a long way from being widely accepted in private practice. High-resolution ultrasound and spectrographic MRI can both provide additional useful information, but only if used by radiologists who are skilled and experienced. As you can see, the staging process is imperfect and potentially complicated.

Choosing the Best Treatment for You

Once the staging process is complete, the next logical step is soliciting direction from qualified experts. Studies in the United States have shown, however, that in the process of rendering advice about treatment options, urologists usually recommend surgery, and radiation therapists usually recommend radiation. I do not mean to imply that these physicians have less than the best intentions. It is not at all surprising that the dedicated individuals who have spent years of their lives honing therapeutic skills in a specific medical discipline would remain convinced that the choice they made when they decided to undergo such rigorous training is the best option for their patients. Unfortunately, however, no head-to-head studies comparing the surgery versus radiation exist to resolve these controversies.

Quality of Life Considerations

Long-term studies of men with good-risk disease indicate that the 10-year mortality rates are now less than 1% regardless of the treatment selected. The major difference between treatments today is likely to be quality of life, not length of life.

So the newly diagnosed PC patient – and his doctor – are faced with daunting amounts of existing knowledge, ever-accruing new knowledge, and imperfect staging knowledge. In addition, the patient himself, who is usually frightened and overwhelmed, must consider an additional big factor – the uniqueness of his individual situation.

Every man diagnosed with this disease has specific life goals and personal attitudes toward sexuality, urinary and bowel function, and survival itself. Some treatments, such as hormonal therapy, can affect physical strength, bone integrity, stamina, and mood, causing unfamiliar mood swings and emotions. How can the medical professionals, even if totally unbiased, have time to get to know the unique needs and desires of each individual patient in the space of a single medical consultation?

Self-Empowerment

Clearly, there is no simple answer to this tangle of complicated issues. However, the newly diagnosed cancer patient is far from helpless. He has two responsibilities. First, he must become informed himself by doing his own research and by taking responsibility for knowing as much as he can about his options. Second, and equally important, he must be discerning in choosing his primary resource – his doctor. To these ends, there is good advice available.

The educational facilitators on the PCRI Helpline staff use three guiding principles to counsel men newly diagnosed with PC:

  1. Do not rush into making a treatment decision. Wait for the shock of diagnosis to wear off before embarking on a therapy that can never be reversed. Take time to consider what additional tests might be beneficial to your staging, and what might give you a better overall understanding of your particular disease and its aggressiveness. And make sure that an overall assessment of the risk for having micro-metastatic disease has been performed. You can afford to take the time to perform these basic steps because PC is usually a slow growing disease.
  2. Hear all your options and talk to experts in all the specialty fields, including urology, medical oncology, radiation oncology, and pathology. Try to speak to known leaders in their respective fields, since quality medical care improves outcomes.
  3. Attend patient support group meetings. These groups typically are run by educated and empowered patients; they exist for only one purpose: to help men get unbiased information and direction about all the different treatment options. Try to find one that pursues current research and knows how to access articles from medical journals. You will find that most PC survivors are very generous in sharing their experiences and their knowledge with you.

What This Means to You

Selecting treatment for PC is a high-stakes proposition, potentially risking sexual function, urinary function, even life itself. Can Don ever go back to dutiful acceptance of a physician’s recommendation without personally critiquing the proposed treatment plan in light of his own personal knowledge and understanding? After reading this article, can you?

Multiple resources exist to help you learn more about your options before a treatment plan is selected. Dedication and hard work will be necessary on your part. At the same time, many effective organizations and resources exist to help you along the way. Educating yourself sufficiently to make an informed decision is possible. Are you ready to embark on this journey to self-empowerment? PCRI is here to support you, to work with you, and help you reach that goal.

Editor’s note: For information on the staging and treatment of prostate cancer, we suggest the three part series by Dr. Scholz Newly Diagnosed PC: Evaluating the Options.

For information on finding resources on the Internet, see the E-Empowerment article from PCRI Insights November, 2004 vol. 7, no. 4 by Dr. Arthur Lurvey.

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