Recently diagnosed

Hi
An otherwise healthy 67 year old diagnosed with PC last may, g6, 1 out of 12, 5%,PSA 4.3, mri pirads 2
oncotyp score -31

Here is my story
as a result of annual blood test with PSA 4.3 went to a urologist, DRE showed a nodule and recommended biopsy. biopsy show 1 out of 12 cores positive g(3+3)6, 5%, right apex. He recommended active surveillance. second PSA done 8-9, result =3.5
due poor communication and explanation of my situation and no desire to do MRI decided to get another opinion

went to 2nd urologist at penn urology in Phila Pa. with biopsy results. Initially recommended surgery but ask me to consult with another surgeon in their organization and he recommended active surveillance which all agreed on. Ordered mpMRI, chest Xray, abdominal CT scan, and bone scan all negative

Comments on mri-no dominant lesion, finding of BPH,central gland enlargement moderate(BPH), done using a 3 telsa magnet.

Comments on DRE from 2nd urologist-slight induration(non specific) of left base

Comment on oncotype-GPS score 31(very low risk), cancer death in 10yr <1%, metastasis in 10yr-1%, adverse pathology 16%,hi grade disease 10%, nonorgan confined disease 8%

Have an apt on oct 5 with second urologist to discuss result of test and active surveillance. since I have never had to deal with any longterm medical situation in my lif I find this over welming wo would like input from those on this board.

regarding MRI what is it telling me. what is it capable of detecting. If a nodule was present would it see that. the second urologist did not mention a nodule but did find induration.

on oncotype-what is the report saying about adverse pathology, hi grade disease, and non organ confined disease. Does result from MRI add additional insight. This report is from first urologist and I got no explanation other than the results were good.

Any comments on penn urology, how good active surveillance program do they have, what do I need to know about their program-questions to ask. Anyone else in phila area with a good program to consider. I have to figure out who I am comfortable with. Its a learning curve.

Based on research I have done it seems that it is possible that this may not progress or progress very slowly. I have been told that about 30% of those on active surveillance will eventually require treatment In addition there are reports out there that suggest that a very significant number of men my age (30% or more) have this and don't know it, and as age increases this % of men having it increases.
For this reason I am comfortable with active surveillance to see how this thing behaves. I would regret undergoing treatment if not needed

Well any comments appreciated especially about active surveillance programs and what to do or not do.

Thanks in advance

fiddle is correct, you are well suited for AS. That is the default recommended treatment from the American Urological Association for your pathology. As fiddle said, you probably would have been rushed into unnecessary surgery a few years ago, and had to deal with those side effects.

Often, an AS protocol will require a confirmatory biopsy within a year of the first one. In your case, with a negative MRI, our doctors may advise you to have or not have that biopsy at this time. Here is a good article from John Hopkins, which has the oldest and most successful AS program in the USA:

https://urology.jhu.edu/newsletter/2016/Discovery2016.pdf

Not every AS program is a strict as JH's, and even they are reducing the requirements for followup biopsies after the first two.

Hello and I'm sorry to hear about your diagnosis. As has been said, your diagnosis is pretty darn good, as far as these things go. I don't have any specific knowledge of the Univ of Penn program that you asked about, but I'd certainly want to be in an established AS program if I were you.

FYI, AS is very safe in the case of low-risk diagnoses and there's a 20-year study that backs that up. Good luck to you and hopefully this community can be of help as you navigate this.

Welcome to HW!

It looks like you have a very minimal amount of cancer. And that's good. You have plenty of time to research and learn about your disease before you decide on your next steps. Please read the "sticky threads" at the top of the page (the pinned threads). There's lots of good information there. I'm so sorry that you have the need to be here, but we're glad you found us.

Donna.

PS...I'm also big on Walsh's book that Pratoman recommended to you. You read that....you'll be more knowledgeable about you situation than 90% of men who don't read it.

ASAdvocate said...
fiddle is correct, you are well suited for AS. That is the default recommended treatment from the American Urological Association for your pathology. As fiddle said, you probably would have been rushed into unnecessary surgery a few years ago, and had to deal with those side effects.

Often, an AS protocol will require a confirmatory biopsy within a year of the first one. In your case, with a negative MRI, our doctors may advise you to have or not have that biopsy at this time. Here is a good article from John Hopkins, which has the oldest and most successful AS program in the USA:

https://urology.jhu.edu/newsletter/2016/Discovery2016.pdf

Not every AS program is a strict as JH's, and even they are reducing the requirements for followup biopsies after the first two.

What are the current requirements for follow-up biopsies after the first two? I would imagine it's a function of the biopsy results. Is there published literature based on similar pathologies to mine? Two years ago, after my second biopsy, I was told every 2-3 years.

mitchden4 said...

ASAdvocate said...
fiddle is correct, you are well suited for AS. That is the default recommended treatment from the American Urological Association for your pathology. As fiddle said, you probably would have been rushed into unnecessary surgery a few years ago, and had to deal with those side effects.

Often, an AS protocol will require a confirmatory biopsy within a year of the first one. In your case, with a negative MRI, our doctors may advise you to have or not have that biopsy at this time. Here is a good article from John Hopkins, which has the oldest and most successful AS program in the USA:

https://urology.jhu.edu/newsletter/2016/Discovery2016.pdf

Not every AS program is a strict as JH's, and even they are reducing the requirements for followup biopsies after the first two.[/quote

What are the current requirements for follow-up biopsies after the first two? I would imagine it's a function of the biopsy results. Is there published literature based on similar pathologies to mine? Two years ago, after my second biopsy, I was told every 2-3 years.

mitchden, the protocols for AS differ from one institution to another. Originally, I was told that JH would require annual biopsies. But, it's been four years since my last one, and I was just told that I may have an MRI next year, no mention of a biopsy.

Now, there may be several factors at play here (1) my age (2) my stable psa (3) JH going along with the other places that have criticized their requirements as unnecessarily strict.

Of course, I am probably crusty enough by now that I would refuse any "protocol" biopsy, and only agree to one if the other tests were alarming.

Also have your doctor send the biopsy slides to Dr Epstein … the methodology of such may be in sticky threads...if not others will chime and and tell you how....He mainly reads pca biopsy results and determines the gleason...reading biopsy slides is an art and subjective rather than a science and objective...do this just in case a less experienced pathologist got it wrong...it happens...

It looks like you've done all the right things at this point. Your mp-MRI and other tests were reassuring and consistent with your biopsy finding. As Pratoman pointed out, the MRI often doesn't distinguish low grade Gleason 6 tumors, which is a good thing since they're usually indolent and dont need treatment.

Since you obviously want as much assurance as you can get before embarking on AS, I suggest you send your biopsy result to Dr Epstein for his expert opinion on your pathology. He is considered one of the leading pathologists on prostate cancer in the US. One of the threads at the top of the forum for new patients has his contact information.

tutor_paul

Actually youre case is informative and important piece of information for me
my read is that the result is based on the tissue sample taken and may be no reflection on what else may be happening in the prostate. if the sample were representative of the rest of the prostate tissue then may have been accurate. In youre case the MRI showed that something else was going on(biopsy sample not representative) and youre doc was apparently on the ball and id another biopsy presumably using mri as a guide.

by the way I am not a medical professional but am an analytical chemist so I know something about sampling and measurments.

Thanks much for youre comments

tutor_paul said...
Just an anecdotal datapoint regarding OncoDX - in my case frankly it turned out to be worthless. At the time I received the results, I was thrilled (see sig for results) and figured I had at least 5 years of AS ahead of me. Second BX 6 months later quickly proved treatment was required.

Post Edited (mufjem) : 9/20/2018 1:47:43 AM (GMT-6)

As many have said, you are in a highly favorable situation ( for someone diagnosed with "cancer"). So do not do anything rash, take all the time you need to explore your options which very likely include AS, get second opinions on the biopsy. Take your time before choosing a treatment that has possible or even likely side effects that can not be undone! You certainly have the time, as far as safety is concerned.