It finally happen - PC

Twenty people will be along in about 5 minutes to help... but to get things started:

Hello NewDay and sorry you have to be here... but SLOW DOWN!

You appear to be in about the best place you can be and still have PC. The first advice will be a second opinion on your biopsy from either Dr Epstein or Bostwick - not sure how that will work AND get the Oncotype though (someone will).

Then... you have every option available to you!!!

"OUT" is one option - but there are a bunch of potential side effects that come with that. You also have Focal therapies, and a plethora of Radiation Therapies - all with 'generally' lower side effect profiles.

You have time, start learning here, you'll be amazed by the depth and quality of the information you receive.

Above all... you have time, don't jump into ANYTHING yet.

...rushing to a meeting please excuse my brevity...

Paul

Welcome and sorry you have joined our club. Again, I can understand the predetermined dx...but as Paul said, slow down some.

First, I commend you for being pro-active and seeking the gene test. I won't pretend to know anything about it!!

But yes, from that initial diagnosis, you have a pin prick of cancer. Now of course, there can be a severity to it, but just be patient. There is absolutely no rush for you as of now, based on these results.

So go love as much as you can, try not to dwell on this, and have your wife even join or read!!

The biggest advice I have is no two people are the same...so while it might have attacked your dad hard, there is no guarantee that it will do the same for you!!

Good luck and let us know your journey!

Jordan

Hi NewDay, and welcome. And I'm very sorry to hear about the loss of your father...please accept my condolences.

I'd like to help start your journey here at HW by covering a few of the basics that many folks here know about, but not many people who haven't personally dealt with PC are aware of...

First, PC is generally NOT hereditary. You got it simply because it is a natural part of aging. Roughly 60% of 60-year olds in the US are walking around with it right now, but only a small percentage of them have run into the set of circumstances (as you have) which led to a biopsy and subsequent diagnosis. It is true that men with other close family members who have had PC tend to monitor/test more frequently than others, so quite naturally they are being diagnosed more frequently. That's how it works with prostate cancer...the harder you look, the more likely you are to find it. (BTW, 50% of 50-year olds have PC, and 70% of 70-year olds, etc. As I said, most simply don't know they have it, and most never will and it will never bother them...they'll never encounter the set of circumstances that leads to biopsy.)

Second, yours is not aggressive. In fact, you have been diagnosed with the very smallest amount of mild and measurable "prostate cancer" that they can find...the very smallest! Furthermore, some of the leading prostate cancer pathology experts are debating about whether what you have should even be called "cancer" at all! Guess why... Because being labeled as having cancer makes people say that they "just want the D** thing taken out," and that's pretty much considered "over-treatment" today. The message that the professional medical societies are trying to get out there today is that not all varieties of "cancer" need immediate aggressive treatment. They are trying to get new patients (like you) not to make treatment decisions based on emotions alone...that's a costly mistake physically, psychologically and financially. They encourage educated decisions based on real data...treat those who need treatment, don't treat those who don't need treatment.

Third, and further to the last comment, there are two places I recommend you start your own patient education. (i) You can start immediately by reading the "sticky" thread at the top of the page here titled "Newly diagnosed - read this thread first." The very first thing you will learn is the importance of classifying your case by recurrence risk level. You are going to find that yours is likely going to be a VERY LOW RISK case, and you should now start every conversation about your case with, "I have a VERY LOW RISK CASE" because that immediately answers a lot of questions others with PC knowledge (or not) will have. (ii) The second reading I would recommend is to order the book online "Invasion of the Prostate Snatchers." Unlike all other books which mostly address aggressive treatment modes, this book was written exactly for men like you who have tiny amounts of PC. It covers the PC over-treatment epidemic that has taken place in this country for the last 20-years.

Take my advice, and what I think would be the advice of every man here...don't rush into an emotion-driven decision.

good luck, and we'll look forward to hearing more from you

Post Edited (NKinney) : 11/4/2015 2:10:38 PM (GMT-7)

New day
Ironically , taking the tumor out if it's aggressive is not necessarily the right thing to do. Aggressive cancer would be Gleason 8-10, not 6. And aggressive cancer grows faster and is generally already outside the prostate when it's diagnosed. So taking out the prostate will not cure the cancer.
If you're really Gleason 6 , celebrate and as has been said : take it slow.
Bob

Welcome to our club that none of us chose. I'll repeat what others have said, a single low volume core at G6 is a low grade as it gets. Two pieces of great news: You have plenty of time to make a decision and any choice you make is curative. At your age and G score, I would certainly look into AS, which basically means you do frequent PSA tests, annual biopsies, and maybe some of the newer things like MPMRI or even a saturation biopsy. AS is a tool to defer aggressive treatment as long as possible, and several long term studies show that doing it correctly does not affect a patient's longevity in any way.

All,

The first time I decide to join a blog is with PC. What a value to have all your feedback and personal experiences. This has helped me tremendously in assessing the current situation.

MINOR STATUS UPDATE
I failed to mention, that in addition to my father's PCa, my grandfather on my mother's side had "non-aggressive" PC. He lived with it for years, died from heart failure 89.

The Oncotype DX Prostate cancer gene test is "pre-approved" by the insurance company ($4,000). That doesn't mean when they are finally billed they will pay the bill. As you guys know, insurance is always a wild card in the health game. Here's the link for the cancer gene test background: http://www.usmdpcc.com/news-genetic-testing-a-game-changer-for-prostate-cancer.php

The cancer gene test takes three weeks for the results. I will definitely report a Status Update at that time. In the mean time, my wife and I are researching home natural treatments that cannot hurt to do with whatever the results are. Apparently, my wife's use of essential oils has a oil blend treatment for PC. What a lady, she is all over this thing from every angle.

More to come, please continue to share your thoughts and advice.

I'm glad you're doing the additional investigative work. As part of that, I would second the recommendation of getting a second opinion on your biopsy slides from from Bostwick or Epstein.

I think it's a very natural tendency for well-meaning family and friends to suggest getting the darn thing out. But that's not necessarily the best course of action as any radical treatment will have SEs and not all cancers warrant taking that drastic. While deciding what to do is a personal matter for you and your wife, I'd suggest that based on what we know, your diagnosis does not suggest that you need to do an RP immediately as you mentioned in your first post. And the general consensus is that a G6 cancer (of which you have a very small amount) will not travel to the bones as was the case for your father.

Good luck to you and do let us know what additional guidance we can give as you move down this path. Glad to hear you've got great support from your wife!

This question came up in a subsequent post…let me address it clearly here…

Prostate cancer is primarily a sporadic cancer, not hereditary or familial… and those are the only 3 types that exist. Most other common malignancies (not all) are also sporadic, but this discussion is all about prostate cancer only.

What is a sporadic cancer?

Most prostate cancers (about 75%) are considered sporadic, meaning that damage to the genes occurs AFTER a person is born. What I just said was that the damage/change happens to their GENES, but just because it has something to do with GENES is not the same things as being hereditary or familial…people often incorrectly mix discussion of genes with it being driven by hereditary or familial.

Before going further in this discussion it is important to know that the largest single risk factor for prostate cancer is AGE. It has been shown repeatedly, in multiple autopsy studies in the US, that with a high degree of repeatability the percent of men who die in accidents are found to have PC at rates which very closely approximate their age. 50% of 50-year olds, 60% of 60-years olds, 70% of 70-year olds, and so on. AGE is the single most relevant risk factor for having PC.

The most significant correlation factor for being diagnosed with PC is having a relative who was diagnosed with PC. (Please note the important but subtle difference in "having" and "being diagnosed.") This correlation is NOT hereditary PC, which is discussed in the next paragraph, below. There is a common misconception that PC runs in families…the reality is it runs everywhere and it is based mostly on age. Family aggregation of PC diagnosis is largely caused by increased diagnostic activity using PSA testing. One study showed that men with 2 brothers with PC were 22-times more likely to be diagnosed than the general population. Unequivocally, the more you look for PC, the more likely you will find PC.

Besides sporadic cancer (75% of PC), the other two types are (1) familial prostate cancer (about 20% of cases) which occurs because of a combination of shared genes and shared environment/lifestyle factors (ie., brothers tend to have the same dietary habits), and (2) even more rare is hereditary (inherited) prostate cancer (only about 5% of all cases) when gene mutations are passed within a family from one generation to the next. Both the links Pratoman also provide this same statistic…in fact the very first sentence of Pratoman's MSKCC link says (just before the part he copied/pasted):

“about 5 to 10 percent of all prostate cancers diagnosed are hereditary, meaning that an increased risk for the disease runs in the family.”


So yes, hereditary PC is out there…for about 5% of all cases…!



It was Dr Patrick Walsh, father of modern nerve-sparing RP surgery, who said: "Prostate cancer is so common that even if there is a hereditary factor, there will be other members of the family who will get the disease sporadically."



.

Post Edited (NKinney) : 11/5/2015 1:29:55 PM (GMT-7)

There's a lot of good advice already given here, but I'm not sure I agree with the statement regarding "treatment regret" to the effect that "the pages here at HW/PC are filled with such cases'.

I have not found that to be true. True, some men feel that way, especially the ones who end up with incontinence or the younger men who now find themselves impotent. Most men, however, seem satisfied with their treatment choices (which is then dismissed by some as simply reflecting some kind of psychological need to justify themselves as having made the correct decision). I think we've had at least one or two surveys regarding this issue.

I wish you all the best as you struggle to decide among the various options available to you.

It has always seemed important to me to remind newcomers that none of us is in as good a position to make a recommendation as is your own uro. We've never laid eyes on you. We can't assess your general well-being. We don't know your medical history. We don't have medical degrees. We haven't palpated your prostate (and I wouldn't care to, anyway). We can read and cite all the studies that have been written, but all we really have to offer is our own personal experiences and advice. ...which we're happy to do. Your physician is in a much, much better position to guide you through the decision-making process. If that's not happening, you should probably seek out a different doctor.

I recently watched my youngest brother and his wife go through nearly the exact situation in which you find yourself. He was Gleason 6 with only two cores positive and a small percentage in each. After much thought, many conversations, some disagreements, and a great deal of study, he has opted for AS. I wish I had had that option, but if you read my signature, I clearly didn't. You probably do.

Keep in touch.

Post Edited (clocknut) : 11/5/2015 2:36:07 PM (GMT-7)

I would say this thread is getting highjacked. Instead of replying to the OP, we're now debating one another over who is the more skilled researcher. Remember, we're talking to a man whose father died from prostate cancer. Even with his stats, it's easy to understand his level of concern.

Post Edited (clocknut) : 11/5/2015 4:32:13 PM (GMT-7)

NewDay, 5 months after my brother had his RALP, my PSA came in high and I had my treatment a year after he did. Then a year later, my other brother had an even higher PSA, urinary issues and final a diagnosis of PC.

I get you wanting to be careful and check everything out.

I had wanted to do the AS thing, but they found cores with g4 cells and the docs ruled out AS for me. Same with my brothers.

Amazing how family members can have similar health concerns.

Andrew

NewDay,
So sorry to hear about your diagnosis.
First, I hope that you were aware of and followed the guidelines for not having sex or doing anything that impacts the prostate for 48-72 hours before you got the PSA testing done when it was higher. Did you check that the lab methodology was the same in your 3.0 - 3.5 results? The doctors don't always look a those details, just the numbers. The difference is that the jump might not be an indicator of a rapid change in your PCA - just more irritation to your prostate gland before the test or a different test method.

I am becoming sort of a spokesperson for the "look before you leap and make sure that AS is right for you approach". What I mean is that when I was diagnosed (Gl 3+3), my doctor immediately said - "get it out" before even discussing other options. When we asked about AS, he sort of shrugged and said "yes you can do that for a Gl 6 PCa". Unfortunately,
I didn't understand that the typical biopsy process collects random samples from the prostate, without any means of telling where the samples were collected. (No GPS locations for prostates yet.) What I didn't know back when I started down this rabbit hole, was that the random biopsy process is fickle.
Randomized testing is nice, but it can either be totally accurate or it could miss the elephant in the prostate entirely. I urge men I have talked to about their PCa to make informed choices if they want to follow the AS route. Talk to your doctor about getting a non-randomized biopsy - i.e., one that uses an MRI or other spatially oriented methodology before the biopsy and then helps the doctor doing the biopsy target any suspicious areas. If this type of biopsy (which costs more money and the insurance companies don't like to pay for the MRI or imaging part) shows that the PCa is only in a single sample and still a Gl 3+3 you have great news. That means you can go into AS without the nagging feeling that what if they missed something. It also means that if a similar method is used in future biopsies, your doctor can resample near prior "hotspots" to see if things have changed.

If this biopsy shows there is an area of concern, then you can discuss the various options to address the PCa and find the best treatment approach. Also, remember that if your doctor is a surgeon, he is less likely to suggest the best alternative being a non-surgical approach.

So I strongly urge you to stop and inhale (as so many folks have eloquently said above) and do NOT rush into anything! PCa won't kill you overnight, unlike some cancers, so you have time to look for the best option for your case.

If you do need to have it "taken out" there are LOTS of folks here who can help guide you through the process and decisions ahead.

My hopes and "non-denominational wishes" (for our moderator's benefit) are that your PCa is one of the types you will die "with", not "from", as so many doctors have said.