Newly diagnosed with PC?....READ THIS THREAD FIRST

admin
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Newly diagnosed with PC?....READ THIS THREAD FIRST Jul 3, 2014 10:40:57 GMT -8

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Post by admin on Jul 3, 2014 10:40:57 GMT -8

We have a lot of collective wisdom about prostate cancer (PC) at this site. This thread is intended to be a list of individual posts, each with an individual piece of wisdom that PC newcomers might not be initially aware of—perhaps things that we wish that we had better understood when we were PC newcomers—to help get them off to a great start on their “patient education” journey.

"Patient education" is the one consistent piece of advice that absolutely every experienced PC survivor gives to any newcomer: take time to learn about prostate cancer.

If fact, the importance of knowledge about the prostate and prostate diseases is being pushed upstream by the professional medical associations to begin before men begin their first PSA test. Many in the medical community have pointed directly to the lack of patient education at the time of diagnosis for the "epidemic" levels of PC overtreatment, and they see patient education as a primary means of curbing PC overtreatment going forward. This approach is especially important if we are going to start baseline PSA testing men at younger-and-younger ages, we've got to help educate them early so that we aren't treating every finding of tiny, indolent PC in a panic as if it were life-threatening...just because it carries the name "cancer."

But, today as it has been in the past, most men will continue to learn about their prostates and prostate cancer after they have been diagnosed. This is where this thread will be incredibly valuable. Newcomers will come here and very quickly come up to speed in the important lessons that perhaps their doctor did not take time to explain, but the men who have gone before them are willing to share in the spirit of "paying it forward."

So, when we see a newcomer joining PCAF in our "Main" Discussion Board, remember to say, "Welcome! Be sure to go to the 'Best Practices' folder and visit the thread called, 'Newly diagnosed with PC?....READ THIS THREAD FIRST'"

Last Edit: Jul 3, 2014 10:45:06 GMT -8 by admin

KC
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Posts: 10,133

Newly diagnosed with PC?....READ THIS THREAD FIRST Jul 3, 2014 11:28:39 GMT -8

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Post by KC on Jul 3, 2014 11:28:39 GMT -8

SUMMARY: Know your "risk group"

So you've been diagnosed with "prostate cancer." Did you know that prostate cancer is really like two, or perhaps three, very different diseases (or others have called it a wide spectrum of diseases)? The different diseases are vastly different, and so they are treated vastly differently. The appropriate treatment is based on one's "risk group"...you basically must know your risk group to find which treatment options are best for you.

Step #1 for all PC newcomers is to be able to answer the question: "What is your risk group?"

The answer to this important question is found in one of the most valuable reference documents available (free), the NCCN Guidelines for Patients—Prostate Cancer. (Bookmark this valuable site...you will want to refer to it again later!)

The NCCN "risk groups" are found on page 43 of the Version 1.2014 document, and repeated here:

* VERY LOW RISK
     -PSA < 10 ng/mL, and
     -Gleason score 6 (or less), and
     -cancer found in fewer than three biopsy cores, and in less than half of any one core, and
     -T1c tumor (T1c means that tumor was found based on a needle biopsy done because of a suspiciously high PSA level), and
     -PSA density < 0.15 ng/ML/g

* LOW RISK
     -PSA < 10 ng/mL, and
     -Gleason score 6 (or less), and
     -T1a, T1b, T1c or T2a tumor

* INTERMEDIATE RISK
     -PSA between 10 and 20 ng/mL, or
     -Gleason score 7, or
     -T2b or T2c tumor
     -Note: if you meet more than one of the Intermediate criteria, your risk moves up the the High group

* HIGH RISK
     -PSA > 20 ng/mL, or
     -Gleason score between 8 and 10, or
     -T3a tumor
     -Note: if you meet more than one of the High criteria, your risk moves up the the Very High group

* VERY HIGH RISK
     -T3b or T4 tumor

* METASTATIC DISEASE
     -Men with metastatic disease include those with N1 or M1 disease

Newly diagnosed? Be able to answer this question: "What is your risk group?"

Also, use your risk group to help descirbe your case in brief; for example, you might start a conversation about your case like this: "I am in the high risk group, and as a result I decided to..."

Last Edit: Jul 3, 2014 11:29:41 GMT -8 by KC

KC’s PC Case History: HERE

KC
Veteran Member

Posts: 10,133

Newly diagnosed with PC?....READ THIS THREAD FIRST Jul 3, 2014 11:40:08 GMT -8

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Post by KC on Jul 3, 2014 11:40:08 GMT -8

SUMMARY: When is a bone scan or CT scan appropriate (or not) for newly diagnosed men?

This post is intended to describe why your urologist may NOT prescribe a routine bone scan or CT scan immediately following your diagnosis…even though he/she may have prescribed a scan for another patient with a different case.

In the era when a large number of today’s urologists were being trained (figure about 15-20 years ago as typical), the initial staging of patients at the time of diagnosis of PC was frequently HIGH-RISK or INTERMEDIATE-RISK. Many men of this era were diagnosed following a visit to their urologist to investigate symptoms which ended up being rooted in advanced PC...by the time symptoms appeared, the case was clearly “advanced.” Bone scans and/or CT scan were, therefore, appropriately prescribed on a routine basis by urologists of that era to check the extent of metastasis, which most patients had at the time of initial presentation (checking for “mets” is the purpose of the bone/CT scans, and men diagnosed with advanced PC will be reoccurringly scheduled for scans to track & measure “met” progression).

Today, on the other hand, the prevalence of PSA testing has resulted in a “stage migration” downward, and the typical newly diagnosed PC patient is VERY LOW-RISK, LOW-RISK or INTERMEDIATE-RISK, and instances of mets in these cases is remote. The habits of urologists to routinely prescribe scans has, however, lingered into the new era.

The standards-setting body of the practicing urologists in the US, the American Urology Association, or AUA, has recently observed that scans were still generally prescribed for all new PC patients, but that a smaller and smaller percentage of the newly diagnosed population were actually found to have mets. Researchers at the Univ of Chicago Medical Center and Dana-Farber Cancer Institute estimated that the total annual cost of over-prescribed but unneeded testing is about $35 million every year in prostate cancer alone. As a result, the AUA updated its “Best Practices” Guideline for urologists to follow, and divided the population of newly diagnosed PC patients into two groups—those for whom a routine scan is appropriate to prescribe, and those for whom a routine scan is not appropriate to prescribe because they are almost certain to be negative.

Summarizing the AUA's “Best Practices” Guideline:
o Routine use of a bone scan is not required for staging asymptomatic men (no symptoms) with clinically localized PC when their PSA level is equal to or less than 20 ng/mL.
o CT scans may be considered for the staging of men with high-risk clinically localized PC when the PSA is greater than 20 ng/mL or when locally advanced or when the Gleason score is greater or equal to 8.

For additional clarity, there are some individuals with case exceptions for whom staging scans may be appropriate even though they appear to not meet the descriptions above, and it is important that the urologist treat each case individually.

The “Best Practices” Guideline is available as a free PDF download from the AUA website (HERE), and is an excellent source if information for PC newcomers of all risk levels.

In fact, the AUA feels so strongly about the over-prescription of bone scans and CT scans by practicing clinicians for LOW-RISK patients that it is listed as the #1 item in their new publication, “Choose Wisely—Five Things Physicians and Patients Should Question.”

Last Edit: Jul 3, 2014 11:40:27 GMT -8 by KC

KC’s PC Case History: HERE

KC
Veteran Member

Posts: 10,133

Newly diagnosed with PC?....READ THIS THREAD FIRST Jul 3, 2014 11:59:41 GMT -8

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Post by KC on Jul 3, 2014 11:59:41 GMT -8

In an earlier posting in this thread, it was stated that “Step #1” for newly diagnosed men (in other words, the first thing they should do/learn) is to be able to very clearly answer the question, “What is your risk group?” This post suggests that there is a “Step #0” recommendation (even before Step #1) for newly diagnosed men: Be sure your biopsy slides are read & interpreted by a pathologist who is expert in prostate cancer (PC). This is another important step that men who are new to prostate cancer might not immediately or intuitively know, but the experienced laypersons here at PCAF can provide guidance on...

SUMMARY: Have your biopsy slides read by PC pathology expert

Pathologists read biopsy samples under a low-power microscope, and make a visual “judgment call” which compares the observed extent of cell differentiation to visual aids of the widely-accepted standards originated by Dr Donald Gleason. This method leaves room for variations in interpretation, and indeed studies have been performed whereby the same biopsy slides were read by different pathologists ended in different resultant Gleason scores.

Your biopsy slides may have been read by a pathology lab that reads all sorts of cancer samples. The pathologist who read your slides might have read a liver cancer sample prior to yours, and a breast cancer sample prior to that. All the different cancer cells look very different.

There are a number of the major cancer centers and labs, however, who have pathologists who specialize in reading prostate cancer biopsy slides. Reading PC slides is essentially all that they do, and their results are considered by the leading PC clinicians to be the most correct results, while results from other facilities remain in question, or “unconfirmed.” Since the Gleason score is one of the leading prognostic tools to predict outcome and used to plan treatment, many of the leading PC clinicians will not even see you for a 2nd treatment opinion until you provide them with the report from one of the PC pathology specialists…that’s illustrates how important an expert opinion on your Gleason staging is.

Reading biopsy slides is an art. For the most accurate and consistent Gleason results, Step #0 for the newly diagnosed PC patient is to make sure that your initial reading was done by a recognized PC expert, or to have your slides sent out for a 2nd opinion at one of the recognized expert labs. The cost (several hundred dollars) may be covered by insurance. All the leading independent labs are set up to easily conduct 2nd opinion transactions from anywhere in the world; their service includes the coordination of shipping of your slides back and forth from your local urologist.

Dr Stephen Strum’s book (A Primer on Prostate Cancer) and the PCRI website provides a list of the leading PC pathology specialist labs who specialize in 2nd opinions, which includes these three highly recognizable organizations:

   • OPKO Lab (Dr Jon Oppenheimer) opkolab.opko.com/Second_Opinions.html
   • Bostwick Lab (Dr David Bostwick)  www.bostwicklaboratories.com/services/laboratory-services/second-opinions.aspx
   • Johns Hopkins Pathology (Dr Jon Epstein) pathology.jhu.edu/department/services/consults/urologic.cfm

KC’s PC Case History: HERE

KC
Veteran Member

Posts: 10,133

Newly diagnosed with PC?....READ THIS THREAD FIRST Jul 3, 2014 12:05:50 GMT -8

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Post by KC on Jul 3, 2014 12:05:50 GMT -8

SUMMARY: Clinical Trials—what are they?

If you are a PC newcomer and have never previously dealt with a major medical issue, then you probably have no idea what a Clinical Trial is. This posting will give you plenty of info to get you started. Before you start any treatment, it might be worth looking into whether you are eligible to receive a higher level of care through a Clinical Trial…

This posting is appropriate for all newly diagnosed men, regardless of which risk group you are in (HIGH-RISK, INTERMEDIATE-RISK or LOW-RISK).

What is a Clinical Trial? A clinical study involves research using human volunteers (also called participants) that is intended to add to medical knowledge. Participants receive specific interventions according to the research plan created by the investigators. These interventions may be medical products, such as drugs or devices; procedures; or changes to participants' behavior, for example, diet. Clinical trials may compare a new medical approach to a standard one that is already available or to a placebo that contains no active ingredients or to no intervention. The investigators try to determine the safety and efficacy of the intervention by measuring certain outcomes in the participants — their disease or condition, how they react to the treatment, and potential side effects, which will be monitored.

Who conducts Clinical Trials? Every clinical study is led by a principal investigator, who is often a medical doctor. Clinical studies also have a research team that may include doctors, nurses, social workers, and other health care professionals. Clinical studies can be sponsored, or funded, by pharmaceutical companies, academic medical centers, voluntary groups, and other organizations, in addition to Federal agencies such as the National Institutes of Health, U.S. Department of Defense, and U.S. Department of Veterans Affairs. Physicians, health care providers, and other individuals can also sponsor clinical research.

Are Clinical Trials only for advanced cases? No, definitely not, although it is true that most trials for new drugs are for advanced, HIGH-RISK cases. A sampling of Clinical Trials which are currently recruiting for INTERMEDIATE-RISK or LOW-RISK men with PC include (but not limited to) these Trial titles (from clinicaltrials.gov):

· Diet in Altering Disease Progression in patients with PC on ACTIVE SURVEILLANCE (AS)

· AS for cancer of the Prostate (ASCaP)

· AS in PC

· Shared decision making in LOW-RISK PC

· Study of Antioxidants on prostate tumors in men undergoing RP for PC

· Quality of Life Study for PC patients

· Guided biopsy for mapping PC

· MRI in Diagnosing PC

· Impact of F-18 PTE/CT and MR Imaging in Management of Primary PC

· Anxiety in men with PC

· Efficacy and safety study of TOOKAD Soluble for localized PC compared to AS

· HIFU in treating patients with localized PC

· Stereotactic Hypofractionated Radiosurgery for Early Stage PC

What are the benefits of participating in a Clinical Trial? The key benefit is the opportunity to receive the latest and best treatment available. Patients receive either the best standard treatment (control group) or an additional treatment (test group) that may be more effective (and not generally available to others). People who enroll in these studies often get more frequent oversight & follow-up from doctors.

Tell me more about the use of placebos. A placebo-controlled trial compares a new treatment with a placebo; people who receive a placebo are in the control group. The use of placebos in cancer clinical trials is generally rare, but is an important component of the new “targeted” drugs being developed for prostate cancer so that researchers can tell whether stabilization of the tumor growth is an effect of the treatment or just reflects the natural behavior of the tumor.

Is it easy or difficult to enter a Clinical Trial? “Both” is probably the best answer. 80% of clinical trials fail to enroll the required number of patients on time, so many are looking for patients. On the other hand, the medical criteria is usually very strict because a valid scientific conclusion can only be reached if all the patients have similar medical conditions/requirements.

Where can I find more information on Clinical Trials?

· ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.

· American Society of Clinical Oncology (ASCO) article “ASCO Expert Corner: Placebos in Cancer Clinical Trials”

KC’s PC Case History: HERE

Post by admin on Jul 3, 2014 10:40:57 GMT -8

Post by KC on Jul 3, 2014 11:28:39 GMT -8

Post by KC on Jul 3, 2014 11:40:08 GMT -8

Post by KC on Jul 3, 2014 11:59:41 GMT -8

Post by KC on Jul 3, 2014 12:05:50 GMT -8

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