As a facilitator of a prostate cancer support group I’ve read many pathology reports. It’s amazing to see the variety of report styles and the amount of information or lack of information on these reports. A patient should be very familiar with the details of his pathology report since this report points to a course of action or treatment. Unfortunately, many men do not educate themselves adequately about their pathology report. They often seem to know little more than that they have cancer and want it out.
How often does a second pathology report on the same tissues differ from the first report?
Johns Hopkins reports that if you have a second biopsy report about 20% of pathology reports from the same tissue samples will have different results. Since Gleason scoring and grading is done visually, it depends on the subjective interpretations of the individual pathologist. In Dr. Walsh’s Guide to Surviving Prostate Cancer it is reported: “Of all biopsies, prostate biopsies are probably the hardest” explains Johns Hopkins pathologist Jonathan Epstein. “You’re dealing with such a limited amount of tissue, and cancers tend to creep around the benign gland,” rather than following a solid mass. I believe that the best way to know if you can rely on the accuracy of your original pathology report is to have a second report done by a nationally recognized expert.
Are there pathology experts that only do prostate cancer?
Most initial biopsies are done by a lab that doesn’t specialize on prostate cancer. However, the Prostate Cancer Research Institute (PCRI) provides a list of nationally recognized pathology experts that specialize in prostate cancer, (see list below) I urge patients to get a second opinion from one of these or other experts specializing in prostate cancer since so much rides on the pathology report. After my first biopsy was done locally, I personally sent my tissue samples (slides) to 2 additional experts on this list. I was glad I did that.
Prostate Pathology Experts
- Bostwick, David 800-214-6628 (VA)
- Dianon Laboratories 800-328-2666 (CN & OK)
- Epstein, Jonathan 410-955-5043 (MD)
- Grignon, David 313-745-2520 (IN)
- McNeal, John 650-725-5534 (CA)
- Miller, Gary 303-315-5408 (CO)
- Oppenheimer, Jon 888-868-7522 (TN)
How important is a second pathology report?
In my view a second pathology report by an expert is one of the most important things a patient can do for diagnostic accuracy. There are numerous items in the report that will give the patient an evaluation of: prostate cancer as well as other prostate conditions such as BPH, prostatitis, calcification, or inflammation. If cancer is detected, a prostate cancer pathologist may give a more detailed picture of what, how much, and how aggressive the cancer is. That provides valuable information for selecting the best treatment protocol. Numbers such as Gleason Grade, Gleason Score, tumor size, volume, and location, extra-capsular penetration, PIN, seminal invasion, etc. are part of the specialist’s pathology report. A more complete and comprehensive report is invaluable.
Do patients have a tough time telling their urologist they want a second pathology report?
I believe they do. I did. Perhaps it’s because we were never told that a second pathology report for prostate cancer is a prudent thing to do. Also, some urologists may not inform patients it’s best to obtain a second pathology report.
What specifically do you request?
It’s important to remember that your biopsy specimens are part of your body and they are your personal property. No medical institution can legally withhold them from you. The specimens come in what are called paraffin (wax) blocks for preservation. Slices are then taken from these blocks and are made into slides that are studied under the microscope for evaluation. It’s best to request the slides so you can send them out out for review. The doctor will still have the paraffin blocks if anything is lost. A good doctor will cooperate and a really good doctor will be eager to see the results of the second report. A copy of the original pathology report with the actual slides are sent to the outside reviewer with a copy of insurance information. Medicare does allow for a second opinion. The order for the review can be made by you or any of your doctors.
What happens if the first and second reports disagree?
If two reports disagree the report by the expert may weigh more heavily. However, this is where a third report may come into the picture. Again, be sure that a third report, if needed, is done by an expert with special expertise in prostate cancer pathology. This report should support one of the prior reports. In my case, additional reports gave me confidence that I was making the right treatment choice. At a minimum, get two reports and know the details of your pathology reports.
Disclaimer: Individual patient regimens may vary and any information provided by a patient should be used to expand your knowledge for discussion with your own physicians and others and should not be considered as actual medical advice.
“Post your questions, ideas, and thoughts to this post so that others may benefit. We reserve the right to edit comments in some instances.”