Medieval. RO#1

piccolo, you're finding out the reality of PC treatment. Seriously. Your husband's situation is really not all that unusual. 0.2 PSA is the traditional cutoff for starting SRT after surgery. The RO is also pointing out reality: that if they can't see where to aim (an obvious nodule), then they may well do more harm than good. Her story of another patient with fluctuating PSA and no obvious nodules is instructive and valuable.

Personally, I'd take that story as hopeful.

What you've been saying the docs are telling you all along is this: "let's see if it holds here for a while before we pull the trigger" From a QOL standpoint, that's not a bad thing. Knowing what to zap, and where to sap is the key. If they don't know, then them telling you they don't know is huge. Personally, I"d rather have a doc say that to me, than say, "No biggie, we'll just zap the whole area and hope for the best"

Piccolo -- DH's post-surgery trajectory is very similar to my own. I had nearly 7 years of PSA readings below 0.1 after surgery in 2002 and then hit 0.2 in 2009 and a few months after that 0.4. Based on the standards at the time of my salvage radiation (SRT) in 2010, a PSA of 0.2 was the recognized trigger point to consider a patient in Biochemical Recurrence (BCR), which means that the blood tests suggest there is still cancer present, but there is no way to know where it is because any cancerous cells would be to few or too dispersed to be detectable on imaging (hence they could be in a earlobe or anywhere). But the likelihood, absent any reason to believe the cells have traveled elsewhere in the body (such as or seminal vessicle involvement or positive lymph nodes at the time of surgery or at the time of BCR) there is a very good chance that the PSA is coming from cells that are still in the area where the prostate was removed and could be destroyed by SRT.

Based on more current standards, many doctors now recommend SRT well before PSA rises to 0.2. You will find other discussions on this message board and links to published studies suggest SRT after PSA rises to 0.03. This makes me wonder why DH's RO is recommending further delay before treatment. And since I gather from your post, and as as Paxton notes, that you also aren't feeling warm and fuzzy with this RO, You are wise to have an appointment and second opinion from a different RO and see what he/she recommends before making a treatment decision.

But do this very soon. Even before the newer standards were published recommending early SRT, studies showed long-term results were measurably better when SRT was done before PSA hit 0.5 than when it was done later. In my own case I had SRT with a PSA of 0.43 and began seeing recurring PSA 4 years later. Earlier SRT may or may not have made a difference for me given that the horse may have already been out of the barn at the time of my post-surgery PT3b pathology report.

Best of luck.

Jim

I understand the earlobe thing completely...and agree with her...tho PA's are ridiculous and would never allow one in the same room with me.

You are in a sticky wicket I can't give any advice on SRT..but will say...with prejudice...and no explanation...that IMO SRT is the major culprit...reference pca over treatment...I wish I could help you but can't...
I wish you success as you navigate the world of pca

piccolopower said...


Jim I am interested in your long term effects from SRT and did you add HT? When your PSA woke up four years after SRT, what is your treatment plan?

Purgatory's damage from his SRT is cautionary proof that SRT comes with risks and that treatment decisions have to be based on probabilities and the patient's decisions about which risks to take because at these low PSA levels there is almost never a way to know for certain if returning cancer cells are still in the prostate bed.

In my own case, my decision to go ahead was a choice to accept the risks of SRT, after several discussions with my RO. Pre-treatment imaging showed an enlarged lymph node near the pelvic bed. The good news was that could be a possible source of the rising PSA. The bad news was because I might have cancer cells in a lymph node -- and in addition to having seminal vessicle involvement at the time of my surgery -- there was also a higher possibility that PCa cells were already elsewhere in my body. I decided to go ahead and the RO targeted a portion of each days radiation fraction at the suspect lymph node for about the first two-thirds of my treatment, which was the maximum he felt was safe to target that spot without risking damage to adjacent organs.

He put me on Casodex for 90 days - starting a week or so before SRT and continuing for a coupld of weeks afterward. This is not standard for most ROs who, if they recommend HT usually put patients on Lupron for 6 months or more. My RO and I discussed this. He is a rare believer in using Casodex when possible to lessen side QOL side-effects, which he says is much more common in Europe. I'm not recommending this course of treatment, just reporting what I agreed to at the time.

Side effects of the Casodex were none at first. By about 8 weeks my nipples started getting sore -- a known side effect of Casodex. Because I discontinued use after three months, this quickly resolved to normal.

As for effects of treatment, I had none of the fatigue many experience. I worked through out the treatment period - though from home, via computer and conference calls, mostly because of the logistics of getting to the hospital every day. about 5 or six weeks into treatment I began having urinary urgency, but nothing I couldn't handle with mind over matter. This would occur when I first stood up or got out of my car, but the urge would pass after a couple of minutes once I was vertical.

about 8 months after treatment I began having sporadic rectal bleeding -- sometimes 4 or 5 times per week, which gradually lessened in frequency and completely went away after another 10 months or so. I already had ED from the surgery, so the SRT didn't make it worse. Though if I were functioning in that department at the time, possible effects would have been a greater concern.

Did I make the right decision? Now that I am seeing PSA again it seems there are PCa cells somewhere that weren't in the pelvic bed at the time of SRT or, if they were, survived the treatment and are now colonizing elsewhere. On the other hand I've had 5 additional years without the need to be on HT and have lived my normal life -- as active as ever, maintaining 60 acres of conservation land in my retirement, remodeling my kitchen, taking several long trailer camping trips each summer.

Future treatment plans for me are a matter of watch and wait. After return of measurable PSA two years ago, the results rose from 0.02 to 0.05 and then steadied off at 0.04 for the last few tests. I get tested again in mid October and we'll see if there is any change. Both my RO and uro agree there is no need to do anything at these low levels. If it starts moving higher or shows the kind of sudden acceleration I had in shortly before I agreed to SRT, I will look for a medical oncologist. I live near Boston and there is an RO I consulted with at UMass Medical Center at the time of my original diagnosis. She is now at Dana Farber in Boston and is who I will likely seek out.

I wish I could say decisions for people like us are clear-cut. But unfortunately they all need to be done with imperfect knowledge and educated guesses based on our individual case histories and personal judgment.

I just noticed a typo in my previous post where I wrote "0.05" where I meant to write 0.5. I've now edited that post. Here is how that sentence should have read: "Even before the newer standards were published recommending early SRT, studies showed long-term results were measurably better when SRT was done before PSA hit 0.5 than when it was done later. "

Jim

Wow, from the unfortunate experience of some individuals here, you would think that SRT is a miserable give from the under world. I drive a car everyday but there are real risks there as well. I have to weigh the risks verses the reward on both. I know people who have lost loved ones in auto accidents and who have been severely injured. Other than here, I do not know individuals who have experienced the degree of trauma to their bodies like some here. I do know many many individuals who have done SRT. Obviously, my limited knowledge base is not a scientific study. Maybe our "zappers" just have better aim. Who knows. Just choose wisely. I am sorry for those who live with pain from SRT.

lets back up. were you told initially that SRT was almost a given with those numbers?

ed

Picc, it sounds like you're making the right moves, getting the information, getting the scans (which may not show anything, but without them you're shooting totally blind). What has me puzzled (and seemingly most everyone in here) is the 7 years of 'great' with this sudden change. I don't know the numbers like some do, but this seems pretty rare.

Good for the new RO to chew some butt about this. "new patient referral" indeed.

Let us know when you have the test results, and what they show (if anything).

Hi Ed.

I think the surgery was recommended due to DH's age at the time of diagnosis. They were confident that he would regain his functions and he did do extremely well. Radiation was pitched as a poor choice again due to age and potential for long term side effects.

The .2 PSA was not preceded by any gradual rise. They were only checking him once per year. Aug 2015 was undetectable. Aug 2016 was .2 so there was no way to attack it earlier.

Did you regain function after the IGRT HT combo?

Also thanks for your good wishes. Bone scan went well. Now we wait until Thursday.

Picc