Rising PSA on "Watchful Waiting"

I have a good friend that had a positive biopsy, about 2 years ago. Don't know how many cores, but G7(3+4). He has done nothing, and other than watchful waiting. Im using that term purposely. He is doing so with his Drs blessing.
A year ago, he had PSA in the 4's I believe, and he waited a year, then retested, 5.2. That was 3 months ago. A month ago, he was at his PCP, who was doing blood tests and asked him if he wanted to do a PSA, TO WHICH HE AGREED. Result was 6.6. He had an MRI just after diagnosis, none since, and no further biopsies.
He really wants to avoid treatment because of fear of ED.
We had dinner last night, and in a nice way, I laid him out. Told him if he doesn't think he's playing with fire, he's fooling himself. And he needs to make his urologist aware of the jump to 6.6, and at least, hear what the Uro has to say. At least.

Very frustrating, I do hope he listens.
Anybody ho goes on AS needs to know 2 things
1. It needs to be AS, not WW, and it needs to entail careful monitoring with a structured approach and defined points of action.
2. Prostate Cancer is NOT the good cancer.
We all know this, but it bears repeating for the new guys.

Asa, no not blowing me off at all. He agreed that he needs to, and intends to make the appointment.

As far as treatment, he's already more or less decided that if and when he needs treatment, he would probably do cryotherapy. I don't think he's researched it, I think his Uro, who specializes in Cryo, suggested it, maybe with a comment that he has better chance of avoiding side effects.

Hopefully he doesn't get to a point where he needs treatment, but if he did I think he would come to me and take my advice, which would be to also consider radiation of the varying types, and surgery, before making a decision. And of course I would steer him to this forum?
But hoping t doesn't get to that.

Yes, he's 62. And he may live to 100 even with the diagnosis I just feel that waiting too long, WITH rising PSA and not AT LEAST having a discussion it's his URO, could be the difference between a one and done treatment, and a long drawn out process of managing the disease.
But as I said, we discussed it, and I think he WILL address it.

Prato, I get your frustration and I would feel the same way. Now that he is addressing it with his uro the chances are better that he will move toward a more active approach. Clearly there are good options...and of course he should get any biopsy slides read by the experts as you will undoubtedly tell him. BTW, full gland cyrotherapy has a high risk of ED - in many times worse than other options. There are many better options of minimize ED risk as you can certainly tell him.

Jim

What's making everyone believe he's playing with fire?

I really wanna see what that sentiment is based on. I'm not saying he's not.

Well my opinion is ignoring it won't make it better. It can be very treatable as we all know so to get diagnosed and not explore further is just senseless. When I was first diagnosed my older sister told me about her manager who was diagnosed with prostate cancer in his late 30's or early 40's and he chose to totally ignore it and was dead in 2 to 2.5 years from prostate cancer. On this forum we constantly hear of so much success that we may sometimes forget that there are many who die. Since my diagnosis I have heard of many friends who brought up that they have friends or family who were successfully treated and prostate cancer is no problem in their opinion and others whose Dad or brother or friends who died from prostate cancer. I'm sure those people would view it as playing with fire. I still think as wonderful as this forum is we sometimes forget that many people die from prostate cancer every year.

What kind of a friend would you be if you did not at the very least be sure that he is making an informed decision and not an ignorant one. I am not a big weeper over all loss of human life, my view is we all will end up there eventually. If someone chooses their way to go that really does not affect my soul. But geez, if it is a loved one or a friend I would like to know that they are making an informed choice and not choosing to ignore it maybe because they have heard somewhere that it is so slow growing that it probably won't kill them. At least make sure they get their diagnosis correct first, informed about treatment options and their real chance at se's then if that's what they decide to do that is their choice.

Obviously we don't have all the facts. Regardless Prat, all the best with whatever he chooses and I hope with your help and support it works out for him....Jim

I was told 10 years before symptoms. That would have put me at 66. Then ADT. (And just think how much more we'll know in 10 years about drugging this crap!) If I were able to do it psychologically. ..it would've been a valid option....In my opinion.

Your friend is 63. Data of non treatment should be somewhere. If just by inference.


Edit: my father in law is 87. He was out playing golf with a friend of his who's 84. The 84 year old asked John..."You seen Tom lately?" "You didn't hear? He passed away last month". "What? He was only 80 years old!" John just laughed.

Post Edited (island time) : 6/18/2016 6:32:57 PM (GMT-6)

Each and every one of us believes...in their hearts...that they are right...this is both the bane and boon of us all...

Think outside of your box...let others think outside of theirs...don't push your self on anyone...share your pain...but avoid those who disdain... feign...and...YOU...would refrain...

Tall Allen said...
IT - I think this is the data that you are looking for:

This tool is for patients who have prostate cancer that has not been treated.



- Allen

Exactly!

And all this time...i like it! Thanks TA

Island time, I get your point but I just think we may be considering different scenarios. I think you are assuming Prats friend to considering making an informed choice to forgo treatment and my take is his friend has probably not got the information he needs to really know his true diagnosis and also has not fully looked into his treatment options enough to even know what his chance of serious se's are.

If he is choosing to ignore it because he is afraid of ED I just think it is sad because his chance of recovery in that area is pretty good with all of the treatments if he is going in without any current problems. I think most of us had fear of the se's but I would not even have considered just letting it go and suffering any consequences down the road. My cancer was already bursting at the seams so to speak. Fortunately for me my recovery from the surgery se's seem to be on a typical recovery.

I wonder if what you are looking for so far as stats to when symptoms would occur is almost impossible because most of our cancers are so different. Different in aggression, different volume and on top of that a lot of times they don't even get the true state of the cancer until a final pathology so really how can one predict. It would be playing with fire because some people are sure to get burnt when theirs progresses faster then what they hoped.

But to each his own on the choices one makes.

I wasn't aware that there was much whole-gland cryotherapy going on these days. It seems to me that is one of those things that sounded great at the beginning, 20 years or so ago, and just never really fulfilled the promise.

And, yeah, if you're worried about ED, then whole gland cryo is likely the worst idea out there. Trans-perineal RP might be close.

Keep it up, Prato, and let us know how it goes.

Pratoman, I didn't read every response already given, but that's obviously not either Watchful Waiting or Active Surveillance. It's really just doing nothing while there is something going on that needs some attention or monitoring. From your opening post, unless there are some extenuating circumstances, I would have a real problem with this good friend's doctor, and this is what I would focus on helping him to see.

You wrote: He is doing so with his Drs blessing.

That's troubling.



Luck he has you to help him. If you've read the "Newly diagnosed..." sticky thread, then you know this excellent definition of WW and can share it with him; ask him if this is what he thinks he is doing:

What is “WATCHFUL WAITING?”

Watchful Waiting (WW) is a strategy of using less intensive follow-up (fewer monitoring tests) and relying on changes in a man’s symptoms to decide if a treatment is needed. If symptoms appear, whether it is a lower urinary tract obstruction or bone pain from metastatic disease, treatment is introduced to relieve symptoms…so it is a palliative (not curative) therapy. This strategy is usually applied when the doctor & patient agree that he has fewer years of life expectancy and/or has other concomitant health problems, or because the patient believes strongly that he would prefer the risk of disease progression to the risks associated with aggressive treatments.

WW has been around a long time, but the fundamental basis for modern forms of this strategy is that one is trying to avoid receiving treatment of any type for as long as possible so that the patient may optimize his quality of life, while recognizing that it may be necessary in the long term to intervene so that he has minimal impact from the potential morbidity and mortality associated with prostate cancer.

WW may also be appropriate for a man who is suspected of having PC but for whom a biopsy is perhaps an unnecessary intrusion because of age or health. In such cases, even if a biopsy proved to be positive, curative therapy would not be recommended, which makes the biopsy somewhat futile.

WW in these, or similar, scenarios may apply to men of any PC RISK category.