New diagnosis

Hi rotor. Sorry you joined
Hi rotor. Sorry you joined the club. However, you will find a lot of good support and information here. I am 49 and was diagnosed in October. I had a robotic RP performed in November. Healing well. What is your PSA, DRE, and how many cores were taken in the biopsy and how many posative? There are a lot of other things you can add but start here and take baby steps the information can bbe overwhelming. Last where abouts ar you located?

Confused
Rotorhead,

Welcome to the forum and sorry to see you here. It's always a shock to get a prostate cancer diagnosis.

From reading the description of your cancer diagnosis I am very confused. First, how did they determine that there were two tumors? Was this the result of some sort of imagery (you indicated your bone scan was negative) or was it through a needle biopsy? Your description of your Gleason scores is puzzling. First off, there is no such thing as a Gleason 1. The lowest possible Gleason grade is a 2 and as a matter of convention, you will never see a pathologist use such low numbers in a report. The lowest possible Gleason scores I have ever read about are Gleason 4 and those were from several years ago.

Gleason scores are the result of a pathologist's subjective evaluation of they level of differentiation in the cancer cells seen in a needle biopsy core. They always consist of two numbers; the first in a scale of 1-5 is the level of differentiation for most of the cancer cells in the sample. The second number is the second most common level of differentiation. Thus, a Gleason score is always two numbers such as a 3+3=6 or a 4+3=7 or al 4+5=9 or some other type of combination that equals a number between 2 and 10.

I recall that when I was diagnosed most of what the doctor told my after the lead off phrase, "I'm sorry to tell you that you have cancer..." was completely forgotten. I know he explained my Gleason grade at the time but I was so shocked and focused on the CANCER word that I wasn't concentrating on anything he said. I had to go back later in the day to get a copy of the pathology report to decipher exactly what it was I had.

I suspect something similar has happened in your case and that you have two positive cores from your needle biopsy not that you had two tumors. It would be extraordinarily rare (but not impossible) to have a Gleason 9 at your young age. A Gleason 9 represents an advanced stage of prostate cancer that has an almost certain likelihood of metastasis. Most prostate cancer (adenocarcinoma) is very slow growing and is not an immediate threat. In fact, most men develop this type of cancer at some point in their life. By the seventh decade, 70% of the prostates sampled at autopsies show some level of prostate cancer.

What would really be helpful to us is if you could post your PSA history, how you ended up getting a biopsy in the first place, what the results of your DRE (digital exam or “finger wave”), if you have any other physical symptoms, and whether or not there is a history of prostate cancer in your family.

The meeting with your doctors is the first step in a journey that will last the rest of your life. If you live in the United States, your urologist is required to explain the details of your cancer to you and review various treatment options. For men who live in the USA treatments typically fall into one of several categories such as surgery, radiation, chemotherapy, or hormone therapy. A small percentage of men also seek cyrotherapy (which involves freezing the affected areas in the prostate). There are other methods of treatment that are not approved by the FDA, which can be sought outside the country such as High Frequency Ultrasound (HIFU). Within the broad categories of surgery and radiation are many subsets that include open or robotic surgery and several different types of radiation. Each one of these have advantages and disadvantages and all of them carry risk of side effects such as urinary incontinence, bowel incontinence, and sexual dysfunction.

The first thing you need to do is understand exactly what it is you have been diagnosed with. No two prostate cancers are alike and no treatment is ideal for everyone. You will want to ask your doctor about the procedures for getting a second opinion on your biopsy report. Gleason scores are subjective and you will want to have your slides screened by a laboratory that has specialists in prostate cancer such as John Hopkins. Most urologists are surgeons and unsurprisingly, most surgeons recommend surgery as the primary treatment. Before making any decisions you should schedule second opinions with radiologists who specialize in prostate cancer as well as oncologists who have background in prostate cancer.

You should take your wife along to this consultation so that she understands what is going on as well. I would also take along something to record the session so you can refer to it later.

Make sure you get copies of all of your records such as the pathology report, the professional notes between your urologist and referring physician, history of physicals that may show your PSA history and so forth.

Once you have this basic information you can begin the process of educating yourself on what steps are most appropriate for your individual cancer given your insurance coverage, personal priorities, and lifestyle.

Best of luck to you and I hope you keep us informed of your progress.

K