The Legacy

Some Background:

My Father died of PC @ the age of 59, 20 years ago.

By the time it was DX'd he was a D4 on the old Whitmore-Jewett scale and his PSA was

125. He was a terminal case and died a year after diagnosis, hormone treatment helped

him last that long ( Lupron)

From the time I was 32, after his death, I was screened every year for PC via a PSA

blood test and a DRE.

My DRE was always normal , although every Urologist I was seen by re-marked that my

prostate , was on the high end of normal in size. My PSA numbers were always well

below 4ng/ml. I always enjoyed excellent health and had a complete physical yearly, as

required through my employment.

I now reside in N. VA. and am 51 yoa.

My DX is as follows: 5-9-13

PSA- 3.6

DRE- Normal

GS- 3+3=6

Prostate Biopsy- 04/26/2013

12 cores- 3/12 - 5% cancer all 3.

All others benign

T1C-N0-M-0

Had an open and frank discussion with my Urologist-

He wants me to have a RP.

He admitted he is biased towards this procedure and that I am rightfully concerned

about the potential immediate side effects that, I will have to contend with, even with

a nerve sparing RP.

I am seeing an Oncologist and a Radiological Oncologist later this week to discuss

other options.

I am also scheduled for a 2nd opinion @ JHU in Baltimore in June.

This forum has been very informative and helpful. It is against my nature to be

public about personal matters, but, felt compelled to put my story and DX out there.

Thanks, 1811 Series 

 

Welcome to the forum, 1811 Series, it sounds like you have been lurking for a while so you may have seen out recent animated discussions of PSA screening and the risk of "over-diagnosis" whatever that is. Before we started arguing about that we were talking about "over-treatment", which is a clearer problem and one you should think about.

From what you have told us it sounds like you might be a candidate for "active surveillance" if you want to be. Low-volume Gleason 6 cancers, when accompanied by a low-ish PSA reading such as yours can often simply be watched closely and treatment can be deferred until such time, if any, as the cancer appears to be becoming more aggressive. Anything you do, or you don't do, will involve some risk and AS offers good odds but no guarantees. But in many cases it lets a man have several side-effect-free years at fairly low risk before he has to end surveillance and seek treatment.

As always, just another option to talk to your doctors about.

Good luck. Thanks for putting your story out there. Keep us posted.

1811, looks like you are doing your homework. Meeting with other Dr, is exactly what I would recommend. Rob, your post right on.

1811, do keep us posted and if yu have questions feel free to ask.

Cajun Jeff

Hi 1811, welcome and thanks for sharing your history. You have come to a good place with immeasurable help and knowledge from those that have "been there, done that" with respect to being told we have PCa, learning about the beast, deciding on a treatment path and moving on.

It does sound like you've been out there learning, quick question for you though - have you gotten a 2nd read on your biopsy slides yet? Labs such as Bostwick and Epstein are two of the best and a 2nd opinion is usually a good thing to add to your dossier.

Sounds like you've been cruising around HW for awhile, and hopefully you've found this is a place where you can learn from people that have and are going through what you are - but do keep in mind we are not medical professionals. Have you read any of the books out yet? Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer" and Strum and Scholz' "Invasion of the Prostate Snatchers" are two that I found incredibly helpful during that part of my journey.

Kudos to you for going out and talking to more of the medical experts in the different treatment approaches, it is prudent to know what is available out there. When you do have these consultations, be sure to ask for their specific outcomes post treatment - % regression free, continency (and have them define what "continent" means - to you and I it means NO issues, while others may qualify that with "only one pad per day" or "only when straining") - same goes with ED. They all have these statistics and if they say they don't or are unwilling to share that would be a cause of concern for me.

As part of my journey to learn about the various treatment options I downloaded, purchased, and copied a number of studies and results that I would also be happy to share with you, so again if you are interested shoot an e-mail my way and I'll reply right away.

We are all out here to help - my very best wishes to you in this journey.

1811 - welcome on board.

Unlike your father, you caught this early. Good for you for being diligent about monitoring this crap since your mid 30s.

Look like you caught this very early and that you'll have multiple options for a full cure.

Nice that your urologist is honest about his bias. Bias isn't bad in my opinion when it's linked to passion and belief. If I picked surgery I'd want my surgeon to believe it was the best option.

Also great that you are seeing an oncologist so that he can lay out all your options for you.

David

PeterDisAbelard said...
Welcome to the forum, 1811 Series, it sounds like you have been lurking for a while so you may have seen out recent animated discussions of PSA screening and the risk of "over-diagnosis" whatever that is. Before we started arguing about that we were talking about "over-treatment", which is a clearer problem and one you should think about.

From what you have told us it sounds like you might be a candidate for "active surveillance" if you want to be. Low-volume Gleason 6 cancers, when accompanied by a low-ish PSA reading such as yours can often simply be watched closely and treatment can be deferred until such time, if any, as the cancer appears to be becoming more aggressive. Anything you do, or you don't do, will involve some risk and AS offers good odds but no guarantees. But in many cases it lets a man have several side-effect-free years at fairly low risk before he has to end surveillance and seek treatment.

As always, just another option to talk to your doctors about.

Good luck. Thanks for putting your story out there. Keep us posted.

Peter:

I also thought AS was one of the many options 1811 would have but would keep the following factors in mind if he did choose AS. First, family history... His father passed of advanced PSA. Secondly, response to possible SEs is typically better the younger one is. So, if treatment seems inevitable down the road, I would at least consider this angle.

Peter, I agree fully. I wasn't trying to be argumentative, just pointing out two angles that I think should be considered in his particular case.

Never thought of it, but you're absolutely right, understanding AS can only help someone understand the nature of this disease and help in attaining some level of calmness while making these difficult decisions.

Welcome and best of luck to you with your decision. My PCa was more aggressive too than my biopsy showed. I thank God I acted when I did and didnt put it off. Just something to think about seeing that your Father had it.