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As you start to deal with the anxiety of hearing "You have prostate cancer," you also have to deal with hearing a bewildering new glossary of medical terms...PSA, cores, Gleason, Active Surveillance...and an alphabet soup of acronyms...IMRT, HIFU, PI-RAD, SBRT, PSMA ... Take a breath. You have time - time to learn, time to live, time to take charge. Prostate cancer is s-l-o-w. 

The American Cancer Society has an excellent, straightforward overview of prostate cancer, What is Prostate Cancer and how do you  know if you have it?  Most of the links below are from their site, cancer.org.

Here are some basic terms to know as you begin your prostate cancer journey
  1. DRE, PSA Discovery of prostate cancer starts with screening, usually with a PSA blood test or DRE (Digital Rectal Exam).  If these or other tests suggest that you might have prostate cancer, you will most likely follow up with a prostate biopsy.

  2. Biopsy At PFOC, we have strong opinions about biopsies: if you're going to have a biopsy, get an accurate one. Until recently, most biopsies were systematic, meaning that a fixed pattern of samples (usually 12) were taken, hoping these were enough to find any cancer that might be present. In effect, that approach is random, so PFOC recommends a targeted or fusion biopsy that uses MRI to target suspicious areas. You may have to insist on a targeted biopsy with some doctors. 

  3. Pathology Results When your prostate was biopsied, the samples taken were studied under the microscope by a pathologist, a doctor with many years of specialized training. The pathologist sends your doctor a report that gives a diagnosis for each sample taken and an overall assessment of the risk of cancer (if any). Your prognosis and treatment are based on that report, so you want the report to be accurate.

    • At PFOC, we strongly recommend a second opinion on your biopsy. Although the pathologist is highly skilled, (s)he is human - up to 30% of pathology results are changed in the second opinion. The Department of Pathology at Johns Hopkins in Baltimore (director Dr. Jonathan Epstein, M.D.) offers a world-class Get a Second Opinion service that many of our members recommend. It’s well worth it. 

  4. Gleason Score  You'll probably see the terms Gleason Grade and Gleason Score (they're slightly different), in the pathology reports, referring to a chart like the one below. Understanding your Pathology Report: Prostate Cancer (American Cancer Society) and Grading Your Cancer (Prostate Cancer Foundation) give clear explanations, and a web search will show you many other relevant sites.

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Depending on your score or grade, you and your doctor may decide on Active Surveillance ("watchful waiting"), ask for additional tests (often genetic testing), or plan for treatment. 

At this point, it's time to bring your level of education about prostate cancer to the next level. Come to meetings to learn from others; view presentations relevant to your situation; consult Dr. Google! (or at least the recommendations on Resources).

The Language of Prostate Cancer

Active Surveillance

Sometimes called “Watchful Waiting,” this is an approach in which a you and/or your physician monitor your condition, allowing time to pass before medical intervention or therapy is used. During this time, repeated testing may be performed - regular PSA test and MRIs.

Benign Prostatic Hyperplasia (BPH)

A non-cancerous condition in which the prostate grows and pushes against the urethra and the bladder blocking the flow of urine. There is an abnormal multiplication of the non-malignant prostate cells.

Biopsy

A sample of tissue is taken from the body to be examined microscopically to ascertain if cancer is present. A doctor will recommend a biopsy when an initial test suggests an area of tissue in the body isn’t normal. It is the most important procedure in diagnosing cancer.

Bone Scan

A nuclear medicine test in which a small amount of radioactive material is injected into the blood. It travels through the blood stream and collects in the abnormal cells in the bones. The scanner can then make images of the bones which can show areas of increased uptake of the radioactive material, suggesting the presence of cancer.

Digital Rectal Exam (DRE)

Digital Rectal Exam (DRE) Finger wave! A health care provider inserts a gloved, lubricated finger into the rectum and examines the prostate for any irregularities in size, shape and texture.

Free PSA

The FREE PSA test measures the percentage of unbound PSA; the PSA test measures the total of both free and bound PSA.

Gleason Score (Basic)

A pathologist assigns a grade from 1 to 5 to the two most predominant cancer patterns in your biopsy and adds the two grades to give the  Gleason Score. In practice, scores are often expressed as a sum (e.g. 3+4, 4+3 indicating intermediate favorable and intermediate unfavorable).

Gleason Score (Detail)

A subjective method of measuring the differentiation of cells to classify tumors by their microscopic appearance and how aggressively the cancer cells may multiply. This system divides prostate cancer into five histological patterns ranging from 1-5. Patterns 1 and 2 represent well- differentiated tumors and are dealt with more easily; Gleason patterns 3 represents moderately well-differentiated tumor cells beginning to scatter; Gleason patterns 4 and 5 indicate poorly differentiated cells with the potential for fast growth. The total Gleason score is determined by adding a primary and secondary score pattern for each prostatic lesion i.e. 3+4=7. The most well-differentiated cancer cells would consist entirely of Gleason pattern 1 ( primary +secondary + 1+1 or Gleason 2 ) and the most poorly differentiated cancer cells would have a 5+5 or total Gleason score of 10.

Grade Group

This is an indication of the risk of your cancer, from Low (Group 1) through Intermediate (Grades 2 and 3) to High (Groups 4 and 5)

Grade and Stage of cancer

The stage of your cancer looks at where the cancer is present in your body. The grade of your cancer describes what the cancel cells look like under a microscope. See Gleason Score and Grade Group

HIFU (High Intensity Focused Ultrasound)

HIFU (High Intensity Focused Ultrasound) is a medical procedure that applies high intensity focused ultrasound energy to locally heat and destroy cancerous and/or damaged tissue through ablation.

Hormone Therapy (HT)

Hormone Therapy (HT) Also called Androgen Deprivation Therapy (see above definition), it is the use of medication or surgery (removal of testicles) to prevent cancer cells from getting the hormones needed to grow. In prostate cancer this means the hormone testosterone.

Immunotherapy

Treatment by stimulation of the body’s immune system.

Impotence

Inability to have an erection suitable for intercourse. May be a result of an injury secondary to radiation therapy, surgical resection of the prostate, hormonal deprivation therapy, or other aspects of neurological, vascular or disease processes.

Incontinence

Inability to hold urine in the bladder. May be a result of radiation therapy, surgical resection of the prostate, or other disease process.

PI-RADS (PIRADS)

PI-RADS is used to standardize interpretation of prostate MRI, improve early diagnosis and treatment, and reduce unnecessary biopsies. In the PI-RADS scale, each lesion is assigned a score from 1 to 5 indicating the likelihood of clinically significant cancer.

PSA (Prostate Specific Antigen)

PSA, or prostate-specific antigen, is a protein produced by the prostate and found mostly in semen, with very small amounts released into the bloodstream. When there’s a problem with the prostate—such as the development and growth of prostate cancer—more PSA is released