Oh Boy, I joined the club. Now what?

What a great resource and comfort all of you are. Thank you. In fact, this forum is the only thing that got me through the last month. Got the call a few minutes ago. 2 of 12 have adenocarcinoma. Gleeson 6.
Left Apex 15%
Left medial apex 30%
I’m 52 with PSA 6.2
Prostate is 4.7L x 5.1W x 2.8H
Volume is 33.14

I see the Urologist on Wednesday. I plan on asking for a 2nd opinion with Dr Epstein. Appreciate any thoughts on my condition and/or treatment options.

What fiddlecanoe said! Sorry to meet you here, but if you're going to be here, you've about the best biopsy results.

The G3+3 is normally a slow-moving cancer, so you really do have the luxury of time to think of what comes next for you. With your 3+3, you probably qualify for any of a number of Active Surveillance programs. Active surveillance is just that -- actively keeping a close watch on your situation and if things ever do progress far enough, acting soon after that point. You may never need to treat actively. . . or you may. The only downside to the AS programs is that whatever is happening continues to happen and you have to monitor it. That is the only side effect - the possible anxiety of waiting.

If you do decide that you can't deal with just watching it and waiting, any of the primary treatment modes can probably cure you. For low-risk and favorable intermediate risk cases they all have very similar cure rates. If you are thinking of any of them, be sure that you meet with a doc who actually delivers that treatment. What I mean is that if you are considering LDRBT (low dose-rate permanent seed implants) be sure the doc you ask about it actually does it. If you ask a beam radiation specialist about seeds, they probably will not have full, up-to-date knowledge about seeds, and may actually do you a disservice by giving you outdated (or even wrong) information.

Whatever you do. . . take your time. You do not need to be in any hurry. Even if you take months to decide, the outcome will be the same.

What the others said. There are probably as many 68 year old dudes walking around with G6 prostate cancer and not knowing it, as guys who do know it. This ain’t gonna kill ya. And yes, you are a perfect candidate for active surveillance.

Explore your options, educate yourself, take a deep breath. There are many types of radiation, there is surgery, and there is AS. Learn about all of these from experts in each area, then think it through for a while before making a decision. U have time.

Well, since you asked for "any thoughts":
1. The second opinion from Epstein is an excellent idea.
2. If it was me I'd strongly lean toward AS. (Fifteen months ago it was me, and my urologist's normal procedure was to drop the diagnosis at one appointment, and then do a follow-up appointment in three weeks to discuss treatment options, after the news had had time to sink in. Once I heard the diagnosis I was already decided on AS to the point that we just jumped into AS with an order for a PSA test, and an appointment for three months later.)
3. With the AS you might never need treatment, or you may be able to delay treatment (and side effects) for 5 or 10 years, and benefit from the improvements in treatment approaches in the interim. (But of course AS requires surveillance that is active, so make sure that there is proper follow up.)
4. If you're up to reading stuff aimed at doctors, you might want to grab a copy of Active Surveillance for Localized Prostate Cancer: A New Paradigm for Clinical Management, Laurence Klotz, Ed. (2d ed. 2018), Humana Press, (ISBN 3319627090), which is available in hardback or as an ebook.

I thank everyone for your replies. I can’t even begin to describe how much I appreciate your responses. I’m in southern Illinois. about two hrs from Washington University in St. Louis (Siteman Center) and one hr from Cape Girardeau MO, one hr from Paducah KY and an hour and a half form Evansville IN. If anyone recommends an expert in This area for any of the treatment regimens I would be appreciative. I’m glad to hear it’s a “good” diagnosis but I must say it’s taken me aback that the apex area is known for positive margins.

convertible,

I was treated at BJC/Wash U-they are certainly in the top 10 places to go in the US. I honestly don't know what AS protocols they follow--but a phone call can get you started. I can say that if you do wind up going for an aggressive treatment, they have world-class experts there. (You must be somewhere near Carbondale?)

Convertible, sorry you had to join us but you really do have a low level of cancer. That gives you lots of options. Assuming Dr. Epstein confirms your diagnosis, many of us would recommend that you strongly consider AS. That's the only way to assure no side effects and studies show if you follow your cancer closely then any treatment later on will be just as effective as if you have the treatment now.

But "active" is the key word. Get into a specific program/protocol that provides the proper follow up that can give you the peace of mind you need. I have a neighbor that has now been following his G6 cancer for almost 10 years with no progression. He has a young wife and is the happiest guy in the world that he chose his course. That's anecdotal and his results do not guarantee yours, but I wanted to share a success story. There are many similar stories from men who frequent this forum.

Anyway, good luck and please keep us up to date re your decisions and progress.

Jim

I’m so very appreciative of everyone’s posts. It really hits like a freight train. All the mixed emotions. On one hand panicking over having cancer while at the same time being thankful it’s a Gleason 6 with only 2 low percentage sticks. Of course as soon as I get my mind convinced I’m going for AS I begin to wonder what was just a sliver away from the needle and if they missed the worst part of it. But I guess that’s the beauty of AS. If there is something worse lurking it should show up as a raising PSA(is that correct?).

And you have me in the right location. If there’s any horror stories about doctors or treatment facilities please PM me. Can we get PM’s? Or is there a certain number of posts I need before features become available?

Convertible,

No real horror stories--you'd be good with BJC/Wash U/Siteman--at least give them a call to start the ball rolling. Also near, but a bit further is Vanderbilt in Nashville.

It also never hurts to ask your local Uro about doing follow up for you if you get into a big facility. With AS, it will involve regular checks--at least every 6 months--and if your local guy can do the basics in consultation with the major facility, it makes life a lot easier.

Sorry Convertable.....there are zero horror stories from anyone lucky enough to have your excellent pathology.

Get into a formal AS program, and stop worrying. We have Prato fo that.

My appointment with my Urologist yesterday went great. While I have been apprehensive of him during my DRE appt and my biopsy appt he really came across as a compassionate and caring doctor yesterday. Our session even went over the hour he set aside and yet a never felt like you was trying to end the appointment. He started off by assuring me that I am a low risk patient and proceeded to discuss all the options available to me. I was quite pleased when the first option he went over was Active Survaillance. Ultimately, that’s what I decided on. I figure that decision is the equivalent to taking my time as everyone advised. This way I have my next PSA at the end of September. He seemes to be very knowledgeable and up to date. He did caution me that being only 52 yrs old I will probably need treatment somewhere down the line and he views AS for me as more of delaying my treatment rather than being my treatment. We talked things that would bring me off AS and he would be concerned once either my PSA gets to 9 or my positive cores double. That made sense to me. At this point I have reconsidered getting a second opinion withDr Epstein and plan on doing that if/when I’m told to come off AS.

Michael_T said...


The only thing I would quibble about is not sending your biopsy slides to Dr Epstein...I can't see a downside to doing that.

i totally agree. Knowledge is power.

Jim

Tudpock18 said...

Michael_T said...


The only thing I would quibble about is not sending your biopsy slides to Dr Epstein...I can't see a downside to doing that.

i totally agree. Knowledge is power.

Jim

Ditto...ditto