About to get kicked out of zero club - what threshold for SRT?

David,

I am sure many others will have a view on when is the right time to pull the trigger. I just want to say that your results demonstrate clearly why the ultrasensitive test has merit. You may decide to SRT now, or when/if it goes past 0.2 or 0.4 but at least you have the data to make decisions on.

Best of luck with your decisions.

Regards,
An

David,

Based only on my personal experience (I'm not a doctor or medical expert), doubling time at these low levels may not be accurate or linear. It took me about 4 years to get from 0.02 to 0.1 -- with a long pause at 0.02 and another pause at 0.04. When I hit 0.1 I then stayed there for 3 full years before there was another increase. But at that point I increased quickly to 0.4 within about 10 months. So, based only on my own experience, the increase was slow and erratic. And based on my experience I was able to avoid SRT and its risks for an additional 3 years after hitting 0.1 before having to pull the trigger.

As for the SRT, I had some minor side effects--rectal bleeding starting about 10 months after treatment end, and some urinary urgency for a few months (though I still get it sometimes). I'd be inclined to wait until 0.2 before taking the plunge into SRT, and with luck that might still be a few years down the road.

Best of luck, whatever you decide.

Jim

David,

According to Dr. King's analysis (below), .2 is the magic number. But -- what is the benefit in waiting until it goes higher? What is the risk in acting now?

The timing of salvage radiotherapy after radical prostatectomy: a systematic review.

- Allen

TA - wasn't positive which David you were addressing. If me, the.20 isn't written in stone, there are good RO's that feel one can wait till .50, but I feel that's pushing the window.

F8 - if a person chooses for sound reasons to delay pulling the trigger, doesn't make it "dilly dally" as you said. Too many variables, and too much a personal choice. Radiation is still a serious decision, even if it goes well.

David in SC

my opinion David and I stand by it. you get one shot at getting it right and I believe wasted time is your enemy.

ed

I've sat in that back row chair by the door at the club meeting too. Sometimes you can't hear everything from the front of the room but at least you can make snide comments about the other members to the guy next to you without being over heard.

I pulled the trigger on SRT as soon as I hit 0.2. A higher reading seemed inevitable and the radiation risks weren't going to diminish if I waited. I also figured the less cancer the treatment had to deal with the better.

Just be sure some one saves you a seat for the first club meeting after you're done.

Very tough decision, and one I quite likely will have to be making soon. Of course, we would like to put off (and possibly finesse altogether) the time for initiating drastic salvage treatments, but what is the risk in doing that? I did attend a seminar recently in which a leading PC expert from Johns Hopkins stated that doubling times for PSA of less than .1 were meaningless. You might ask your onc about that. I wish you the best, and please keep us posted.

proscapt,

I understand your dilema. I had DaVinci in 2005 (positive margin) and my psa stayed undetectable (<0.1) for about 5 years when  it started creeping up. It hit .07 in August 2011, six years from my operation. I began studying supplements that had been shown to have an effect on PCa. In February 2012 psa hit 0.11 and my uro encouraged me to consult with a radiation lab. I had heard so many horror stories about the side effects of SRT, along with the idea of going in 5 days a week for 7+ weeks, that I decided to postpone SRT as long as I could so began a supplementation program in earnest.

Don't know if any of the supplements I take are responsible. And, even if they are, I have no way of knowing which ones, if any, are working. What I do know is that as of a couple weeks ago my psa was 0.12, nearly 2 years since it was 0.11. The doubling time is many years.

I have been very fortunate in that I have had zero issues from my prostatectomy and, at 66 y.o., am fit, active and in very good health. As such I am in absolutely no rush to jeaopordize that with radiation. Even my uro agrees now and has gone back to 6 month psa checks.

Of course if my psa begins to accelerate at some point I will have to reconsider my position. In the meantime I will spend stupid money on my supplements and enjoy my good health. Of course my hope is that my psa will remain low forever or, at worst case, continue to rise at it's current leisurely pace. Another factor in play is that the longer we are able to put off treatment, the more advances that are being made. My uro told me the other day that there are some incredible improvements in the works for SRT. Could even be that, with more precise targeting and dosage control, the nuber of days required for treatment will be drastically reduced.

I know our cases are not identical but thought you might glean something from my journey. Good luck.

 

Jmon said...
proscapt,

What I do know is that as of a couple weeks ago my psa was 0.12, nearly 2 years since it was 0.11. The doubling time is many years.

jmon,

Like you, I stayed at 0.1 for a long time (three years) -- then it started moving quickly -- doubled twice to 0.4 in about 10 months. So I'd suggest holding your fire on SRT but having PSA tests every 3 months or so. That way you can catch it if it suddenly breaks loose and still get SRT before hitting 0.5, which to me is a critical threshold.

Jim

Jim

Thank you all for your thoughts and suggestions.

An38 – I am a strong believer in having the extra information that the ultrasensitive testing provides even if it does drive my crazy with anxiety at times.

Newspaperlover – thanks for sharing your experience at SKMCC – I would be interested in knowing who you saw there.

Bohemond – I appreciate that doubling times at low levels are not all that reliable. From what I’ve read most of the time doubling times slow down as we get to .1 or higher. My PSA has had times of being relatively slow moving and times of moving quite briskly.

Purg – thanks for coming in off sabbatical to reply. You’ve had quite a horror story of treatment error – gross malpractice in my view – and on top of that it’s not worked for you. I had PNI identified both in biopsy and in the pathology report, so the horse may be out of the barn. The docs I’ve spoken to give me only about a 35-40% chance of SRT being effective, even though the SMKCC nomograms put my odds at about 50-55% if I do adjuvant HT. I don't know if the difference in probability is due to the PNI or some other factor. I'll ask next time I see him.

Tall Allen – thanks for that article. The good news there is that waiting from .1 to .2 only causes a 2.6% of relapse free survival. That doesn’t seem like a terribly steep price to pay. But of course each of gets 100% of whatever outcome we get. That is sobering. To answer your question “what is the benefit of waiting” the benefit that matters most to me is the possibility that my PSA might level off and stop advancing. The doc who is counseling me to wait says that about half the people in my situation experience a levelling off without futher treatment if they can resist pulling the trigger right away. But the doc who is saying “go now” says “You have had a clear pattern of increases over long enough; the chance that it will level off is in the single digits”. So two highly regarded docs see the same data and come to different interpretations of it. If it were just a question of putting off the unpleasantness for a year or two I wouldn’t bother. I’d rather have the extra edge in beating the beast. But if there is a 50% chance that I might not need further chance, that makes it tempting to wait.

F8 – see my note to Tall Allen above as to the reasons for potentially waiting. By the way, no offense taken at the words “dilly dally”. It’s cool.

Bohemond – yes, .4 is definitely the high end of the waiting range. I don’t think I can let it go that far, regardless of what anyone says.

STW – Congrats on your great success with SRT. Please keep a chair free for me in the back row.

JNF – glad to hear the ADT3 and SRT is keeping the cancer in remission. I think Myers makes a very strong and good argument and I was ready to go that way until the other two docs I saw strongly discouraged it. I wish these guys could talk to eachother and get on the same page. It would make it so much easier for us patients.

Phenom – thanks for the support. We are indeed in a very similar situation.

Jmon – bravo on controlling through supplements. I’ve been making heavy use of supplements, essentially the Myers’ regime. What have you been taking?

Again, thanks everyone and good luck with your journeys!

Proscapt,

You are getting a lot of different points of view here and we all know the decision on how to proceed is personal and, ultimately, only yours to make. Some people would urge you to get zapped the instant you start seeing a psa increase. Personally, I wouldn't trade off the past healthy years since I hit 0.1 for the uncertainty of where I would be if I had opted for SRT. If I were younger maybe I would feel differently but I doubt it. However, at 66, I intend to enjoy every good year that I can get.

As mentioned before my psa first hit 0.1 about 2 years ago. Since then my psa's were 0.11, 0.13, 0.10 and now 0.12. If my psa's stay in the same tight range I will milk it as long as I can. Of course, I don't plan to be stupid and will certainly move forward with treatment if psa starts to accelerate.

You asked about supplements. I also follow the Myers regime somewhat but with some additions. I adjust it periodically as infomation becomes available. I don't expect a cure from supplements/diet but I do think that in some cases, especially of slow progression, that they may slow the progression even further. Perhaps long enough to avoid further invasive treatment ... or until new treatment advances become available.

If you send me a PM we can share experiences with supplements.