Surveillance to delay treatment, decision time?

I have read numerous books, chatted with many online, met with multiple doctors, talked to a few who have gone before me and I am coming to a place of acceptance that I will eventually have treatment. The critical questions that remain are When and How will I know it is time?
Active Surveillance’s intent is to watch those that may have an indolent disease that may not be the ultimate cause of death, ensuring the window of opportunity is not missed, and delaying the side effects of treatment.
My Uro considers my case low risk, even with a bit of 3+4, in one core <5%. Now contrasting Klotz and Epstein criteria; I would be a candidate for AS in Klotz model but not Epstein. I believe about 20% of confirmation biopsy upgrade stage and trigger intervention. That also suggests the reminder doesn't get upgraded.
The researchers/experts in the field talk probabilities and fortunately paint a good picture about long term survivability for AS candidates. And they point out some die from the disease and /or have a more challenging disease to deal with. My summary of the readings that I have done in the last weeks suggests there is a very low risk of AS contributing to dying from PC, with definitive AS regime and clear trigger points.
What’s the debate? For me, it is less about side effects and more about the risk of surgery. I think the potential risk of surgery is equal to or higher than the risk of dying form PC with low-risk disease. Now that is my feeling, not a fact that I can scientifically prove. However, most of our decisions are informed feeling based. I have a friend who chose RP because the thought of cancer growing in him was not palatable. Now his outcome was great so in hindsight great decision.
My internal debate can be more accurately described as a narrowing of my view as to the best course for me. I am trying to stay very open to other’s opinions and experiences, even those who think I might be taking a big risk is I stay on AS. All information is important to inform the next decision.
The next decision is the way I am going to manage this. Increased PSA informed the decision to do multi parametric MRI, which informed the fusion biopsy, which is informing the treatment decision. I am awaiting Decipher results to inform the next decision, which I think will be confirmation MRI / biopsy sometime later this year or early next.
Some days I feel like I am deciding not to decide but that is not accurate. I am making incremental decisions based on new data and new education. I really feel I am in a gray zone, young enough to have a long life ahead, cancer that is not in the “very low risk” category, and I believe a great Urologist/hospital (Yale) that will guide and inform the next decision.
I am attending a PC conference next week led my op Docs/researchers in the field, attending a weekend get away with fellow PC guys and their spouses in a few weeks, should meet with Uro soon to discuss next steps. These steps are all to help inform the decision. What I am clear on is there is no urgency to the “get it out of me” feeling I had the day I was told I had PC. I am throwing a wide net to get information, which I can then narrow through discernment and counsel. I am getting more comfortable with the approach discussed and there are moments of “what if you are wrong?” that concern me at times.
I welcome any thoughts that may inform my journey.
Thanks, Denis

Subdenis

I was on AS for 4.5 years before going for surgery just over two weeks ago.

I had a steadily rising PSA going from 3.9 five years ago to 7.4 this year. Going into this spring, I had had two biopsies which showed a very small amount of Gleason 6 (2 cores out of a total of 33 at <5% each) and two mpMRIs which were negative. In general, I was comfortable being on AS during this time, although as my 6 month PSA tests kept showing a rise without a good explanation, I did wonder if we were missing something. I'd do some online poking around/research including on this site for a few days after test, then pretty much forget about it and move on.

This spring, my third MRI showed a larger lesion in my transition zone which led to a fusion biopsy showing a sizeable tumor with all 5 cores taken from it showing 20% to 80% G6. It had been missed over time because biopsies don't usually hit TZ and MRI doesn't pick G6 that often. Even though only showing G6, my Uro felt strongly that a tumor of that size has the potential to eventually turn more aggressive and he pushed me to do surgery saying I'm young, healthy, in good shape and very curable, so take advantage of my favorable situation now before things move to something more problematic. I got a second opinion from a RO who concurred. He felt surgery was the right option for me. BaSed on all of this, I made the decision for surgery which was done on 8/16/17.

So far, Ive found the whole experience of surgery to be much easier than anticipated and as it turned out, my pathology came out favorable (see signature) but did show an upgrade to Gleason 3+4=7. So at this point, I'm very happy with my decision to have it. It's a good feeling to know I'm likely cured (still need that first post op PSA) and surgery is behind me.

So overall, my feeling is AS worked well for me. I got to go 4.5 years without treatment, AS program then identified a reason treatment which I acted on, most likely (knock on wood!) in time. That's my experience.

My question for you is why do you think surgery is so risky? Is about side effects or the surgery itself?

Denis, first a question, then an answer...where is the conference you are going to next week, is it at Mt SInai in NY by any chance?
I am considering going, not sure.

Regarding your question... everyone is different. I know for me, I am just not wired for AS, I'd never relax. So I'm not a fan. But that's me, and it's hard to argue with the research that shows it does not cost lives.

I think the results of Decipher, unless they come back borderline, should have. Heavy weighting in your decision. If it comes back deep in low risk territory, then assuming you can mentally deal with AS, it's probably a good choice.

At the very least, it seems like your low-risk cancer gives you an extended period to make a decision about treatment. That could lead to an official AS program, surgery or radiation. Regarding treatments, you mentioned the potential SEs of surgery--have you looked at any of the types of radiation?

Also, Jim makes some great points above, including the second opinion on the biopsy slides and how adding a signature would be very helpful for us.

My concern for Denis, as I've pointed out elsewhere, is that he may be doing a great deal of research only to confirm a decision already made. The danger being, of course, that information received, contrary to an already desired answer, would not be taken as seriously.

Just be very aware of confirmation bias....the tendency to interpret new evidence as confirmation of your existing, even if very subtle, desires.

Good luck, Denis!

Pratoman said...
Denis, first a question, then an answer...where is the conference you are going to next week, is it at Mt SInai in NY by any chance?
I am considering going, not sure.

Regarding your question... everyone is different. I know for me, I am just not wired for AS, I'd never relax. So I'm not a fan. But that's me, and it's hard to argue with the research that shows it does not cost lives.

I think the results of Decipher, unless they come back borderline, should have. Heavy weighting in your decision. If it comes back deep in low risk territory, then assuming you can mentally deal with AS, it's probably a good choice.

Pratoman thanks for the comments. I am going to LA for the conference, Klotz and Epstein and others are presenting. See http://pcri.org/

Thanks, Denis

Signature, can't seem to get mine to display, it shows in my profile? Deni

Michael_T said...
At the very least, it seems like your low-risk cancer gives you an extended period to make a decision about treatment. That could lead to an official AS program, surgery or radiation. Regarding treatments, you mentioned the potential SEs of surgery--have you looked at any of the types of radiation?

Also, Jim makes some great points above, including the second opinion on the biopsy slides and how adding a signature would be very helpful for us.

Thanks, Michael. The dean of Yale's pathology program relooked at my biopsy slides and found a bit of 3+4, see signature. Denis

Thanks Allen, I have not ruled out surgery. Actually if I had to choose today I would choose surgery. Do you know if Dr Epstein personally looks at slides or his staff? I hope to meet him next week at the conference. Thanks for your input. Denis

Denis,

After following you on three websites for the past month, I would bet serious money that you will have surgery within the next 18 months.

You talk about AS, but I doubt that you see it as a solution.

ASAdvocate said...
Denis,

After following you on three websites for the past month, I would bet serious money that you will have surgery within the next 18 months.

You talk about AS, but I doubt that you see it as a solution.

ASA interesting comment. There is little doubt I am unsure about the next steps. As of today, I plan to follow my Uros lead. I am not a person to try and predict the future. I will make a decision based on what I know and then go to the next decision point. Seems to me that most of the AS folks at some point have an intervention. So the delayed intervention is what I suspect will happen at some point.

Do you know of any studies that discuss average time on AS?

Denis

Subdenis said...

ASAdvocate said...
Denis,

After following you on three websites for the past month, I would bet serious money that you will have surgery within the next 18 months.

You talk about AS, but I doubt that you see it as a solution.

ASA interesting comment. There is little doubt I am unsure about the next steps. As of today, I plan to follow my Uros lead. I am not a person to try and predict the future. I will make a decision based on what I know and then go to the next decision point. Seems to me that most of the AS folks at some point have an intervention. So the delayed intervention is what I suspect will happen at some point.

Do you know of any studies that discuss average time on AS?

Denis

There are two long-term AS programs that publish regular results, JH and Sunnybrook. The selection criteria at JH is more rigid than Sunnybrooks', so their results are different.

I believe that about a third of JH's enrollees drop out within five years (some due to choice, some due to upgrades), but that fifty percent were still in the program at 15 years. Sunnybrook's numbers were not as good.

Sunnybrook's numbers were actually better -- 55% were still on it after 20 years. 55% were still on AS after 15 years too, perhaps indicating that more than half of low risk men have an indolent form of the disease that will never progress.

There is no age at which it a patient is better off, in terms of expected long term side effects, in forgoing AS for treatment. (Assuming there is no evidence of predominant pattern 4, of course.)The following articles address the issue of young men getting bad advice about AS from their urologists, but they both conclude that mathematically, there is no age at which a decision to treat vs watch makes sense from a QOL perspective:

/pcnrv.blogspot.com/2017/08/the-myth-that-younger-men-should-not.html

/pcnrv.blogspot.com/2016/08/can-man-be-too-young-for-active.html