Struggling with a Final Decision

seriously?

dude ...

are you talking or play'n? Roll the dice ...

Put a twenty on the man with no prostate - I'll take those odds.

Ken--

These are matters to discuss with the multidisciplinary team on Friday. IMO, there are times when posting is counterproductive, and this is one of them. Find a TV series you like and binge-watch it till Friday. Or cut big pieces of wood into small ones, as Andrew does.

I can't imagine why you'd want another biopsy (which, as you know, could give you a false negative) and surgery instead of SRT. I bet surgery on the anastomosis runs a significantly higher risk of morbidities and serious SEs than SRT does. Sounds to me like you're looking for an alternative treatment that would give you closer to a guarantee of success. Hard to believe this would be it.

It is a tough call. I was undetectable for 6 years and had radiation to prostate bed and nodes at year seven when my PSA went above .03. I had some side effects but PSA has been undetectable since radiation. If I had it to do over again, I would have made the same decision. My worry was similar to yours. I had a clean pathology report after surgery and I didn’t know if radiation was worth it but I went with the odds and went though with it.

Pratoman said...
Unfortunately it’s weighing heavily on me and there is nobody I could really talk to about this that understands or has the knowledge to understand the dillema.

Another good reason to tell the kids. Family may not understand the ins and outs of PCa, but they understand you.

It, no need to apologize, I knew you were down from our last phone call prior to that email. Glad you are feeling better. I hope, much better. You know you can call me any time. (Like I’m in shape to help anyone right now - but that won’t last too long)

Rob2, thanks for your input, I remember us talking bout it at my first GFMPH in Rochester, I’m really glad it worked out for you. Man, you acted early.

I think if I was a Gleason 8, the decision might be easier. I think, but maybe not

AK, my item #6 that you are referring to was “no matter what I do, this disease probably won’t kill me”.

I am 67, almost 68 years old. I Think, even in a worst case scenario, it would take 15 years for PC to get me. And that’s in a worst case. Like, if I do nothing and wait for PSA to get to 5 or even 10, then start hormone therapy. By then I’m 83. So with pro active treatment, even if I wait like you did, for PSA to get to .2 or .3, And considering all the new treatments, scanning techniques, etc that are constantly being approved, I think it would take 20 years for me to die of PC if I am at all proactive. And I’ve got coronary artery disease as a co-morbidity. So that further reduces chance of death from PC.

Your mileage may vary. (Besides which, I might be totally wrong)

Pratoman, Thanks for explaining but I am trying to understand. Did I get this
Right? You think your psa will take 15 years to reach 5-10?did I understand this
Correctly?
3 years ago I calculated when my psa will reach .3, I came with a conclusion
That it will reach it by 2022. You can see from my signature that I am now
At .36 in the middle of 2018. That is why I asked the question about item 6.
Psa is very unpredictable and it does not move in a linear fashion, at least
This is my understanding and before I know it, it will go to 5 in a couple of years
Or so. Teddy9 sent me a predictor but haven’t used it to figure this out.
Please don’t get me wrong, I am not doubting what you are saying, just trying to
Understand. As you know Mets could start at much lower psa numbers and then
A patient is forced to start HT at much lower value than 5. It’s a difficult situation
That I am to get a handle on it.

Pratoman,

Two observations based on reading your postings with great interest:

1. When you post, hopefully the answers are helpful to you, but it is also important to realize that many who may not be answering your posts are likely finding the information and decision processing you are sharing to be tremendously helpful to them as they think about their own situation. I am one of those folks.

2. For what it is worth I sense you are understandably trying to weigh the possibility of being over-treated vs. being under-treated. My instinct, based on your postings, is that you would likely have less regrets over the former than the latter. This would still leave open the question of timing but less so the action.

@AK, I was speaking off the cuff, could be 10-15 years, could be 5. I recall reading that the average time from BCR to clinically detectable (or clinical symptoms, don’t remember which) Mets is 8 years, and average life expectancy from that point is 5 years. But those are old stats, I’m thinking the life expectancy is better now. So don’t take my comments literally, th point is, just thinking out loud that I could grab some more years if I so chose, if no treatment and good QOL

@RobLee, I’m going to respond to you by email

@idog , your point is well taken and a big part of my thinking. And your comment “like someone else....” is funny, because I was thinking to myself. ... I’m turning into Stan. lol. (No offense Stan, it’s a joke)

@AJMan, I’m glad that my posts are helping you with your situation. It’s one of the reasons I stuck around here after my surgery even though I thought for 2 years that pc was in my rear view mirror
Re your point, yes I would regret undertreatment way more than overtreatment. At least at this age. Maybe in 10 years I’d be thinking differently.

@JNF, Jack, you are one of the most thoughtful, and at the same time, most knowledgeable guys here, so I’m glad you gave me your thoughts, thank you. You make good points. And I think your comment, I don’t know what you should do, is practically universal. That’s the problem. I don’t think the Doctors know what I should do. I think that they think they know. But like your and my clients, even THEY, don’t know what they don’t know. As long as I’m feeling ok, I plan to be at Jeff’s at least for a day or two. If I move forward I think I’ll be doing treatment by then Monday thru Friday. Hope to hoist a few Jamison’s with you.

Thanks everyone for the comments,
It’s really amazing how people on the outside hear prostate cancer and think to themselves, “oh, it’s prostate cancer, that’s no big deal” 🙄

Michael, what I’m not comfortable with is the 20% chance that it’s NOT there and we radiate anyway. But I get your point and you are right,

I had one RO recommend no ADT, and another saying if it were up to him and I didn’t care either way, he’d do the ADT, for what he says is the 5-10% additional benefit it would give. The nomograms say the benefit is more like 15-20% for me. If I do go forward I’m going all the way, including ADT

Prat...I didn't phrase things well, but glad you figured out what I was trying to say. Sounds like you've researched the added benefit of ADT. If you don't mind me asking, what are the "with" ADT vs "without" ADT numbers? Is a 20% benefit the equivalent of going from a 90% chance of success to a 91.8% chance of success or is it going from 70 to 90%?

I'm not trying to be pedantic here, but just asking since ADT was by far the biggest issue of my treatment. (Although if you only have six months, it might not be that bad...)