Newly Diagnosed
Keep Calm and Take Charge
When you're first diagnosed, you may be quickly overwhelmed by the vast amount of information now available about prostate cancer. Our Newly Diagnosed meetings are intended to help you find your way through all that information, so that you can advocate for yourself and take charge of your cancer.
A Newly Diagnosed support group meets on the 2nd Tuesday of each month at 5pm Pacific Time
Zoom Link: https://us02web.zoom.us/j/86164783897
Come talk with us about your anxieties and your diagnosis
These meetings are intended for anyone who wants to learn more about prostate cancer - especially men who want to talk specifically about their own diagnosis, for their families and friends, and even men who are not diagnosed but may be wondering if they should be tested.
If you'd prefer not to talk, that's OK. You'll still learn a great deal about your diagnosis and options simply by listening to others.
How It Works
Meetings are structured and moderated, but they are not lectures - everyone gets a chance to talk and be heard.
-
If you want to talk, "raise your hand" in Zoom.
-
When it’s your turn, the moderator will ask “what’s going on?”
-
Start with your name, your age., and where you're located. (If you've subscribed to the mailing list, tell us the name you used.)
-
Then take a few minutes to talk about your diagnosis: how you found out, where you are getting treatment, what your doctors told you about your illness, what you know so far, what you’ve done to date, and, if you like, how you’re feeling and getting along at this point.
-
The moderators will respond, perhaps asking you a few questions – the Diagnosis Checklist below tells you the information that’s helpful for them to know.
-
The moderators, and perhaps some other participants, will usually provide some clarifications, talk about resources, and suggest options (not medical advice--that's for your medical team) based on their years of experience, current guidelines for prostate cancer, and on promising new technologies.
Your moderators
Dr. Charles Metzger, MD (ret.), VP of the Prostate Forum, is a urologist with more than 30 years of experience helping men with the disease.
Ira Kaget, the principal moderator, is living with prostate cancer under "Active Surveillance" since 2009. He has followed the extraordinary growth in methods and technologies for treating prostate cancer in recent years and is a particularly knowledgeable resource for newly diagnosed patients.
Although each prostate cancer diagnosis is different, you will hear similar recommendations: get a second opinion; use MRI-guided biopsy; advocate for yourself. You'll hear about local centers of excellence. And you'll learn that you are not alone on your journey.
Guidelines
We don’t offer medical advice, but we do recommend that you follow the guidelines of the Prostate Cancer Foundation Guide (PCF) and the Prostate Cancer Early Stage patient guidelines from the National Cancer Coalition Network (NCCN). In particular, we know from our experience the value of following these guidelines:
-
Get a second pathology opinion on your biopsy. We generally refer men to the Get A Second Opinion team of Dr. Jonathan Epstein at Johns Hopkins.
-
Get an MRI guided (fusion) biopsy.
-
Keep copies of your medical records and try to understand them
-
Learn what you can about prostate cancer so that you can advocate for yourself.
Come Prepared
To get the most from the forum, we recommend you come as prepared and as informed as you can.
You've probably already had some tests done and seen some results, so gather and summarize that information. We'll help you understand the results. Don't worry if you don't have all the information - we'll still be able to help, and you'll still come away from the meeting better informed, knowing the questions you should be asking. This list should help.
Diagnosis Checklist: (see the basic Terminology definitions below for any terms you don't understand.)
-
When and how were you diagnosed?
-
What is your PSA (Prostate Specific Antigen) history? What is it now and how has it changed over the past year or so?
-
Have you had a Digital Rectal Exam (DRE - "the finger")? What did the doctor find?
-
Have you had a biopsy? When? (You may want to have the pathology report with you at the meeting.)
-
Was it a fusion biopsy (MRI-guided)?
-
-
Do you know your Gleason Score?
-
Is there any indication that the cancer has breached the prostate capsule? Has it spread to other parts of your body?
Terminology - the Basics
The list below explains the principal terms you want to know initially, and the page Take Charge of Your Prostate Cancer will help you develop a measured and educated strategy. When you are ready to go deeper, you'll find more comprehensive definitions on the Terms to Know page, links to a wealth of helpful information on the Resources page, and details of encouraging developments for prostate cancer management in our Presentations Library.
Active Surveillance
Small tumors and low-grade prostate cancer usually grow very slowly. Active surveillance for prostate cancer is a management strategy where the cancer is closely monitored rather than treated immediately - so no side effects. (Two of our Board members are on Active Surveillance - one of them for more than ten years.)
Sometimes called “Watchful Waiting,” Active Surveillance is an approach in which a you and your medical provider actively monitor your condition, allowing time to pass before medical intervention or therapy is used. During this time, repeated testing may be performed - regular PSA testing and MRIs.
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.
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, and current guidelines prefer a targeted or fusion biopsy that uses MRI to target suspicious areas. You may have to insist on a targeted biopsy with some doctors.
The most common type is a transrectal ultrasound-guided (TRUS) biopsy, where 12-14 tissue samples are typically taken. Newer methods include:
- MRI-guided biopsy
- Fusion biopsy (combining MRI and ultrasound)
- Transperineal biopsy
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.
Fusion (MRI guided) biopsy
First an MRI looks for suspicious lesions. This is followed by a targeted biopsy to examine the suspect lesions.
How it works
A doctor first obtains an MRI of the prostate to identify suspicious areas, then uses a special device to fuse the MRI images with real-time ultrasound images during the biopsy.
Benefits
Helps doctors avoid missing aggressive prostate cancer, and may help find cancer at an early stage
Procedure
Outpatient procedure performed under local anesthesia that typically takes about 20 minutes
Risks
Possible side effects include difficulty urinating, bleeding, infection, pain, and allergic reaction
Compared to traditional core needle biopsies, which use random sampling, MRI fused ultrasound biopsies can help doctors avoid missing hard-to-find prostate cancer. The procedure can also help minimize the overdiagnosis of non-aggressive cancers.
Genomic (Somatic) Testing
Genomic testing for prostate cancer (also called Biomarker testing or somatic testing) involves analyzing the genetic material (the entire genome) of prostate cells. It allows you and your medical team to make informed decisions about management and treatment of the disease.
Biomarker testing can be especially helpful for people who are newly diagnosed with prostate cancer that's still confined to the prostate. Genomic tests can cost between $3,800 and $5,000, but are usually covered by Medicare and some private insurers.
Important mutations include:
- PTEN loss
- TP53 mutations
- TMPRSS2-ERG fusion
- AR amplification
- DNA repair defects
Applications:
- Treatment selection
- Prognosis assessment
- Clinical trial eligibility
- Resistance monitoring
Gleason Score (Basic)
A Gleason score is a number (usually assigned by a pathologist) that describes the grade of prostate cancer and helps determine treatment options. 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).
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
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.
PSA levels can indicate prostate cancer but can also be elevated due to:
- Age
- BPH
- Infection
- Recent ejaculation
- Certain medications
General PSA guidelines:
- Under 50: < 2.5 ng/mL
- 50-59: < 3.5 ng/mL
- 60-69: < 4.5 ng/mL
- 70+: < 6.5 ng/mL
Screening Tests
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.