One Man to Another
Medical Specifications of Prostate Cancer
by Jules Reichel
This is not a doctor's column. I am, in fact, a patient of Dr. Catalona and a member of the URF Board. This column attempts to provide a patient perspective about prostate cancer to the readers of Quest. This column is the second in the series. You may want to review the prior column to understand some of the basic terms. It is available on Dr. Catalona's Website, www.drcatalona.com.
Many of you were kind enough to contact me after the first column and ask further questions. Here are some additional thoughts, which may be helpful.
Are these dark feelings about life that result from diagnosis of the disease necessary, and do they continue?
There is no nice way to say it: prostate cancer is a dreadful disease.
Many men die, and many experience great changes in their quality of life. Enormous progress is being made in treatment, but when such a disease strikes home it's not easy to be emotionally unaffected.
May 28 was my most recent PSA test. Before I knew the test result, we left on a vacation. I had a wonderful time but in the quiet moments I could not forget that a letter was at home with information about my future. People call it PSA anxiety.
I think this anxiety is a normal result of my knowledge that a terrible disease is lurking within me. When we returned home I quickly went through the mail looking for the letter. It was there: PSA less than 0.1ng/ml, undetectable; Ah! that felt good. All of my knowledge and all of my counseling of others didn’t prevent the stress. Maybe these feelings will go away someday and maybe not.
All that you and I have for now is a growing body of knowledge about the disease that we can be ready to apply, if needed; and, the courage to continue on with a sense of good cheer.
In the first article, I said that I was going to use clinical stage, PSA reading, DRE findings, number and percentage of cancer in biopsy cores, and Gleason score as the terms in the medical specification of this disease.
You will see many other terms in use, with some disagreement about the best set of terms to use. However, this set of terms seems to be sufficient for providing clinical analysis of the problem. I will discuss some of the other terms in a later article.
An important uncertainty that many patients do not consider is that these terms are biological measurements and estimates. They vary over time, the laboratory results sometimes have errors, and the values are subject to human judgment.
As an example, one of the most common errors is in using the Gleason score. Recall that this number varies between 2 and 10 and is a measure of the aggressiveness of the cancer. However, the pathologist "reads" the cell patterns using a microscope, and all that he can look at is the small tissue sample that was obtained in the biopsy core.
It’s not uncommon to find that the pathology report after surgical removal of the prostate has a Gleason score that is one step higher than the value at the time of biopsy. There is no evidence that Gleason score changes after biopsy. The problems are in how the doctors collect the tissue and how the pathologist estimates the score.
Similarly, PSA readings can vary. Laboratories do not provide the same answers from the same blood samples. One study of men who had PSA values less than 10ng/ml, found that 18% of the men had PSA differences of between 1 and 2ng/ml from blood samples taken 90 days apart. Quite a few had even larger differences.
Biological measurements have changes and errors. It’s not possible to simply look at a number and be sure that it is right. Taking more than one test, getting second opinions on pathology reports, staying with a single laboratory for repeat PSA readings, understanding how to prepare yourself for the testing process, and using a very experienced prostate cancer doctor to advise you about the reasonableness of a change in readings are good ideas.
In the midst of all my turmoil about my disease, I had to fight with the insurance company about being paid. Many of you are reporting the same problem.
A recent Supreme Court decision is helpful to the HMO patient.
They ruled that HMO’s must allow for an outside evaluation of "medical necessity" as a basis for their judgment about payment. There are HMO issues and Medicare issues.
In this article I will discuss only the HMO problem, especially as I experienced it. Firstly, my HMO provider refused to pay for treatment by Dr. Catalona since he was "out of network"—I live near Syracuse NY. And, secondly, they denied payment for an additional day of treatment at Barnes- Jewish Hospital. In the end they paid all of my bills.
Here are some hints to aid your getting full payment if you are having trouble.
1. Persist, persist. Always write letters or FAX’s; phone calls are often not enough and are not remembered. Follow all of the procedures for appeal and do it on time. The appeal process is helpful because you then get a review by doctors and not administrators.
2. Your written argument must be that "in your particular case" there is "medical necessity" and "reasonableness".
Reasonableness is an assertion by your in-network doctor that in his opinion the procedure must be done and the probability of successful outcome will be significantly higher if you make a particular medical decision.
"Medical necessity" is reinforced by your expert, in my case Dr. Catalona, when he says that he is a medical expert who is recognized as an authority in treating patients with your problem. It seems to be very helpful if your medical expert publishes papers so others know that he is truly an authority.
Each of these doctors must supply a letter of support. The critical point is that you must offer a reasonable argument that this treatment plan is the right one for your case. Remember that you are just a patient. You do not have to defend medical arguments. You are just following the doctor’s orders. What else can anyone want of you? It’s probably helpful to the appeals doctor if he recognizes the name of your selected medical expert.
3. Coverage for the additional day of stay at the hospital was entirely worked out for me by the hospital staff. They told me that the insurance company was annoyed by the request.
The hospital people told the company that I was a patient of Dr. Catalona. They said that they have detailed medical records to support the treatment and they would be more than happy to go to appeal. The insurance company gave up.
It’s helpful to find out whether your doctors and hospital are willing to help you. It’s not a time when you want to do it alone.
The title of this column was not intended to exclude women. Participation by wives or others is often critical to proper treatment, and, for many men, such help greatly aids the decision making process. Prostate cancer also greatly affects the lives of these women and understanding what’s happening is only fair. A British study reported that 45% of calls to their prostate cancer help line were from women. Women are interested and want to and should participate.
One of the early questions that any patient asks is, "What do I do with these terms of the specification of prostate cancer? How do they combine into something that I can understand?"
It’s not an easy question, and, as usual, there is a dispute over how best to combine all of the information. Let’s look at how the pathologist, Dr. Epstein, combined terms to develop the concept that he calls "insignificant" cancer. He studied the prostates of men after prostatectomy (surgery) and compared them to values of the pre-surgical terms.
It’s uncertain whether prostate cancer that is truly "insignificant" is clinically detected (that is, detected in ordinary medical practice).
The least aggressive prostate cancer has a Gleason score of 2 to 4. In a study reported by Dr. Albertson, those least-aggressive patients only have a 4% to 7% chance of dying within 15 years if not treated with the intent to cure.
We might say that such cancers are "insignificant".
However, the Mayo Clinic Guide to early treatment reported that their data showed that 25% of these men would have cancer outside the capsule (the boundary tissue around most of the prostate) within 10 years, and that is not insignificant.
Prostate cancer is relentless and if a man doesn’t die from other causes it will tend to progress. All prostate cancer must be periodically monitored with PSA and DRE tests. A palpable tumor, or a rising PSA, or falling free to total PSA percentage, overrules Dr. Epstein’s explanation of "insignificant".
I wish that Dr. Epstein had called his result "minimal risk for now" or "candidates for watchful waiting" but his term "insignificant" is in common use.
His conclusion was that the patient had insignificant cancer if he was clinical stage T1c (no palpable tumor during the DRE - -digital rectal exam- - test), a free to total PSA percentage of 15% or greater, fewer than 3 biopsy cores which showed cancer, with no single core showing more than 50% tumor involvement, and a Gleason score less than 7.
This grouping of terms illustrates how one can identify men who have some level of patient risk for prostate cancer, or recurrence. These factors establish Dr. Epstein’s minimal, or lowest, risk group. All of this information is available to a patient on his biopsy pathology report. Other studies have shown that even a more inclusive group of men would have similarly low chances of recurrence.
When I first looked at Dr. Epstein’s rules for insignificance, I wondered why we needed to know both the Gleason score, and the information about the biopsy cores. They all seem to be describing the aggressiveness of the tumor. In a recent paper, Dr. Gleason explains that for each Gleason score, there is a more aggressive version and a less aggressive version and that possibly half of the group who have a particular Gleason score are of each type. We therefore need both types of measurements.
In Dr. Catalona’s study of this question of the tumor, he comments, in part, on Dr. Epstein’s study and observes that it is tumor volume in the prostate that contributes directly to this identification of the more or less aggressive tumors. Even with organ-confined prostate cancer (the most favorable case), tumor volume correlates with the risk of recurrence.
Dr. Catalona accepts that the use of the technique of counting the number of cores or percentage of cores that show cancer, and the maximum extent of cancer in any core, correlates with the risk of recurrence, but says that this method has not yet been demonstrated in a formal analysis.
Despite its uncertainties, the combination of Gleason scores and percentage of positive prostate biopsies seems to be of increasing interest in studies that try to predict disease recurrence after treatment.
What’s the bottom line result? These issues are technically complicated and still under study. I’m only attempting to illustrate that the terms for describing prostate cancer can be combined to figure out the seriousness of a man’s medical problem. You can now ask, "How does my case compare to Dr. Epstein’s "insignificant" cancer?
Next time we’ll continue to look at practical patient issues and discuss more ways to bring the information about prostate cancer together so we can give our informed consent. If you wish to provide feedback on this column, you may contact Dr. Catalona through his Website: www.drcatalona.com (see "contact us"), or send me an e-mail at email@example.com
Click here to read the next article, Statistics and Prognosis, in the One Man to Another series from Jules Reichel.