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Biopsy Diagnoses FAQs
Jonathan Epstein, Professor of Pathology, Urology and Oncology at The Johns Hopkins Medical Institutions, has worked with the Association of Directors of Anatomical and Surgical Pathology (ADASP) to create a website that helps patients and their families understand their prostate biopsy diagnoses. Here is his letter regarding their website

In conjunction with the Association of Directors of Anatomical and Surgical Pathology (ADASP), I have developed a series of Frequently Asked Questions (FAQs) to help patients understand their prostate biopsy pathology reports. The FAQs regarding prostate explain the following diagnoses: 1) Benign; 2) HGPIN; 3) Atypical; and 4) Cancer. No matter the clarity of the report, patients are often confused by the medical terminology they encounter in their reports.

For example, in a prostate biopsy report with favorable grade adenocarcinoma on one core and high grade prostatic intraepithelial neoplasia (PIN) on another core, I am aware of cases where patients have may focused on and worried about high grade PIN since they read that high grade tumors are bad.  Pathologists are the best physician group to help patients better understand their reports, as many clinicians, themselves, don’t fully understand pathology reports. 

Furthermore, based on my daily experience of discussing pathology reports with patients, some clinicians are busy and may not take the time to fully explain the report to the patient.  Even if clinicians address some of the issues at the time of telling the patient about their cancer diagnosis, patients may be “shell-shocked” and not fully integrate what they have been told. Being able to carefully review their report at home allows them to better digest the information and more meaningfully discuss the findings with their treating physicians.  

While there are several excellent websites devoted to cancer in general as well as organ-specific cancer sites, these sites are insufficient in and of themselves. None of the sites are aimed at deciphering biopsy pathology reports on specific cancers, but rather provide information in general about various cancers.

All FAQs have been reviewed by a small group of lay people to insure that they would be understood by the typical patient requesting his or her pathology report. As a patient requesting a pathology report will not be the “average” patient in terms of their education and medical sophistication, the FAQs are at a somewhat more advanced level than if they were targeted for the general populace. The site-specific FAQs have also been reviewed by respective subspecialty physicians to insure that they do not infringe on the treating physician patient relationship.

The website containing the FAQs is www.adasp.org. We believe that this is an invaluable resource for cancer patients.

—Jonathan Epstein
Professor of Pathology, Urology, and Oncology
The Johns Hopkins Medical Institutions

Oops!
Appendix A, page 155, end of paragraph 1.
An observant reader has noticed two errors in Appendix A of How We Survived Prostate Cancer: What we did and what we should have done. As the author, I apologize to the reader, am duly chastened, and eager to make things right. As luck would have it, all errors are in the same sentence: Appendix A, p. 155, end of paragraph 1. The sentence should read:

Radical prostatectomy (laparoscopic, robotic,
endoscopic, and variations such as pelvioscopic)is usually recommended wherever possible if the PSAs 10 or lower and Gleason Score is 6 or lower.

And here is a clarification of a term used in the above text:
Pelvioscopic radical prostatectomy was pioneered by, among others, Dr. Albert — who wrote the foreword to my book. The approach was presented in a paper published in Urology (50: 849-853, 1997). He describes it here:

The pelvioscopic radical prostatectomy (also known as Extraperitoneal Endoscopic Radical Retropubic Prostatectomy) was developed by Drs. Peter Albert, Adley Raboy and George Ferzli (see the journal Urology, 50:849-853, 1997) to utilize the advantages of the extraperitoneal radical prostatectomy and the open radical prostatectomy. In the pelvioscopic approach, a camera is inserted into the umbilical area and a midline trocar is used to free up the prostate and to visualize the nerves...Note that the pelvioscopic radical prostatectomy differs from the laparoscopic radical approach in that the latter procedure is perfomed via the entrance to the peritoneal cavity with risk to intraabdominal contents in terms of adhesions, bleeding, bowel injury etc. The pelvioscopic approach is more direct, as the prostate is located within the extraperitoneal space.

NOTE:
There are different surgical approaches to radical prostatectomy.
The "gold standard" is the retropubic radical prostatectomy popularized by Patrick Walsh, M.D., Johns Hopkins University. He described the "nerve sparing" radical prostatectomy as an adjunct to the radical to enhance potency results in the post-operative period...Since the prostate is located in the retroperitoneal space, this approach is ideal for removing the prostate without violating the
peritoneal cavity.

Another open surgical approach used in obese men is the radical perineal prostatectomy. The prostate is removed through an incision between the scrotum
and rectum. This approach carries with it the disadvantage of making it impossible to palpate or sample the nodes to rule out nodal disease, if the
patient has a Gleason score of 7 or greater.

The endoscopic radical prostatectomy is performed by inserting a camera into the peritoneal cavity while inserting 4 other trocars into the abdominal cavity
(the retroperitoneal cavity is entered). This procedure is not ideal since it involves entering a body cavity where the prostate is not located. Hence, the extraperitoneal endoscopic radical prostatectomy was developed to allow this
procedure to mimic the open radical retropubic procedure, a totally extraperitoneal approach. An inherent drawback of this endoscopic procedures is the inability to palpate the baldder neck and apex of the prostate, resulting in an increased number of patients with positive margins.

The robotic prostatectomy is similar to the transperitoneal endoscopic radical prostatectomy, but is performed with robotic control, through robotic sleeves.

The pelvioscopic radical prostatectomy was developed to have the advantages of the extraperitoneal radical as well as the advantages of the open radical prostatectomy, as stated previously.