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Posted 2/26/2013 6:24 AM (GMT 0)
I was diagnosed right before Christmas. I've been on a path to have surgery done. My 2nd opinion today, based on my PSA level <1.0, GLS 3+3, and his exam, recommended Active Surveillance. While I was initially excited, I am wondering if there are forums/links/sources of information that talk about this option. If you've gone down this road, please share your thoughts.

Dazed and confused....
Posted 2/26/2013 1:26 PM (GMT 0)
Hello, SCM2013

Welcome to the forum.

There'll be a pile of guys along in a bit to give you information. Several of them know more about such things than I do. But, since I am here first, I will asks the obligatory questions and then tell you what I think.

First, the questions. How old are you? It can make a difference in evaluating your options. Second, do you have a copy of your biopsy result? If so it would be helpful to know how many cores were positive, what percent of each core was affected, and which cores they were (base, apex, etc.). How did you come to be evaluated for PC? Did your doctor feel a lump on a DRE?

That having been done, based on the information you have already given it is somewhat unlikely that your answers to the above questions will convince most people here that you aren't a good candidate for AS.

...Hmmm. Too many negatives in that sentence. Let's try again...

Based on what you have told me you seem like a good candidate for AS. It is possible that your answer to my other questions might change that, but not likely.

[Note to self, really must stay away from the keyboard before that first cup of coffee in the morning.]

Again, Welcome to the Forum.
Posted 2/26/2013 2:10 PM (GMT 0)
Welcome.
You have sort of low PSA. Why did you have a biopsy or TURP? Was it for a nodule on the prostate?
What is the size of your prostate?
You might consider having a Free PSA blood test.
AS requires acceptance of living with a slow-growing cancer. There would be periodic biopsies.
Trials have shown that a vegetarian diet can slow the progression of early prostate cancer.
Good luck with your decision.
Posted 2/26/2013 2:57 PM (GMT 0)
Same thought here, did you really mean your PSA is less than 1.0? Are you on any kind of hormone therapy while you are waiting for a decision? What is your total PSA history, was it ever higher than 1.0?

Reason, not always of course, but most urologists don't order a prostate biopsy until the PSA is 4.0, or higher, and/or unless there is a positive indication from doing a DRE (digital rectal exam).

There are some dangerous prostate cancers that don't give off much PSA, not trying to scare you, just trying to get all your facts lined up before giving any kind of opinion.

Good luck and welcome,

david
Posted 2/26/2013 3:14 PM (GMT 0)
Welcome SCM2013! Step #1 for any newly diagnosed man with PC is to understand their “risk category.”   Any discussion about possible treatment should only begin—and only makes sense to begin— after one clearly understands their risk category.   You have provided some of the information necessary, but not quite all of it yet.   The NCCN, the National Comprehensive Cancer Network, created a set of common guidelines for clinicians to define risk categories.   As others have alluded to already, the missing piece of information (for your risk category) is the T-category which describes the local extent of your tumor…in your case, whether the DRE was positive or not. We have started a thread titled, “ Newly diagnosed with PC? – read this thread first ” which is intended to be a collection of wisdom from the savvy lay-persons at this site to help accelerate the PC-education of all newly diagnosed men.   The thread is just getting started and is not yet very complete, but it does contain a good descript ion (and link) to help you determine your “risk category.” I encourage you to take one step at a time…don’t rush your decisions unless you find a reason to.   So far, you have not posted any reason to consider rushing anything.     All newcomers should be able to answer this question:   What is your risk category?           edit:   Also, please find the link to an article about AS posted just yesterday in another thread by JohnT.  "Excellent aritcle on AS by Dr Klotz" .  In your PC-education, you will learn that Dr Klotz is one of the world's authorities on active surveillance.   Post Edited (Casey59) : 2/26/2013 8:37:23 AM (GMT-7)
Posted 2/26/2013 4:12 PM (GMT 0)
One of best places to read about AS experiences is yananow.org, go to "survivor stories", you can choose to read from those that follow AS.

http://yananow.org/query_stories.php


There is also a specific discussion category on ustoo.org website on AS.

http://www.inspire.com/groups/us-too-prostate-cancer/topics/active-surveillance/
Posted 2/26/2013 4:55 PM (GMT 0)
See the post on Klotz and AS, it was posted yesterday and should give you a lot of information.
As others have mentioned your stats are incomplete, Number of cores taken, Number positive, and % of core involved along with your psa would be helpful.
Again, what prompted a biopsy with a psa<1?

JT
Posted 2/26/2013 9:56 PM (GMT 0)
Thank all of you for your input and information request. Here goes:

AGE 57 years old, Hispanic decent

PSA History
2005 0.9
2010 1.0
2012 0.6

WHY DIAGNOSED
I had a colonoscopy that identified an enlarged prostate. I found a local urologist who did the DRE and did not like what he felt. That prompted an ultrasound and biopsy. His recommendation is surgery.

BIOPSY SPECIFICS
2 of 16 cores
on each core, <3% involved

NOTES
- In the 2nd opinion, the doctor did a DRE and said it felt "normal"
Posted 2/26/2013 10:15 PM (GMT 0)
From what I see, AS sounds reasonable. The cancer might take 20+ years to get you without treatment. You can always change your mind. The only reservation would be if there is a nodule on prostate, which sounds debatable.

There is also Targeted Focal Therapy at a few places in USA where they try to kill just the small tumors. Only a few places do this.

There is also some injection therapies in clinical trials. e.g. ProstAtak Phase III and NX-1207 injection into prostate tissue Phase II

There is no rush at all to decide. Good luck.
Posted 2/26/2013 10:46 PM (GMT 0)
One thing you can do that is relatively inexpensive and easy is to get another pathologist to look at your biopsy slides. I only had one core in one biopsy that ever came back positive. On the first reading that core was scored as Gleason 6 involving 3-5% of the sample. My second opinion came back with the same positive core but this time it was scored Gleason 7(3+4) and that second opinion on my biopsy samples changed my ultimate decision about treatment.

I think you will find that most of the members here will tell you that in your situation they would do Active Surveillance. I guess I would to but I will add a cautionary note that you should find a doctor who believes in the "active" part of "Active Surveillance". There are a very small percentage of men who receive a diagnosis such as yours for whom there is more aggressive cancer present that was just missed in the biopsy. There aren't many but those men can get in big trouble if they don't stay on top of monitoring their cancer to look for progression. The other 90+ percent don't need that much watching. The problem is that one can't know who that few guys in a hundred will turn out to be.

One of those guys is me. It would have been a bad idea for me to wait.
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