SRT- Possibly my turn in the barrel

 

These treads are the ones that scare me.  Even though I am told by Epstien at Johns Hopkins my chance of cure is 99.6% it seems like too many G6 organ confined people are having trouble here.  Even when I do research on yananow.net it seems to confirm the Johns Hopkins data there seems to be too many G6 people here with trouble.  I don't know what to believe anymore about any of this.... 

Hi James C,

Sorry to know about your PSA rising. I see from all the posts above that you are a respected veteran in this forum and all are contributing to help you in these bad times.
I am new in this forum but a ten year survivor of PC (ready to answer anything related to my case). Ten years ago I confronted the same situation as yours and the answers were very evasive. After all, prostate cancer is a science still in the ruts of “trial & error” and the best treatment is advised in basis of past experiences. Cure of PC is possible only if we get rid of it by surgery or burn it inside. Otherwise, we just prolong our life span.

To me the side affects from treatment maybe the most important factor to consider. I prefer a sustainable Quality of Life then a Paraplegic Survival. Doctors surely have a tendency for applying the protocol they believe best, and those protocols follow guidelines published by trusted organizations (the ones were we get our knowledge). It seems to me that the trigger for your next treatment, if any, should be based accordingly.
One point to recall is that in 100 PC cases not all choosing an earlier “attack” have an assured “cure”.

I would like to recommend you a visit to this site; http://www.nccn.org/professionals/physician_gls/PDF/prostate.pdf

Wishing you the best,
Baptista

James,
Sorry to hear of the rising PSA. I can't add anything but my best wishes for a leveling off before salvage is needed.

Hi James C.

You are welcome,

Surely you can count on me as a regular member/helper in this forum. I will try to answer as many questions as my knowledge permits.

I learn with my own experience that “triggers” for treatments are difficult to define in asymptomatic cases.  The model is like; “No pain/ Nothing to treat”, but, in PC that is not the case. More and more Active Surveillance is recommended because we are dealing with a serious situation were the only thing notable is related to the side effects. A commitment for SRT, ten years ago, was based on a PSA level between 0.4 to 1.2. However, Watchful Waiting was as well recommended. Harmful treatments were applied as a preference to young patients with a life expectancy of over 10-years.

Today, the concept is the same, but the machinery are now better assuring a precise and accurate treatment, and giving an opportunity to consider a “going for it”. In a treatment with radiation I would take as a prime consideration the type, maker, spec, etc, of the equipment, and would procure the best no matter where it would took me to go or travel.

I am not recommending you SRT unless your doctor or your reasonable findings takes you to do so. You probably know that a doubling time of PSA over 6 months period is not so risky, and that will give you time to search and ponder before rushing to a decision.

Wishing you and all “comrades” the best,

Baptista

Casey:

Thanks for the source. It's very interesting. I'm not done reading it yet, but here's what I glean so far:

Defn. of BCR varies. It sounds like the Ford doctors are pretty much in line with things (>0.20).

One should definitely not dawdle in pursuing SRT once a BCR is found. SRT has mediocre results overall, but it has decent results if we use the aforementioned BCR definition and get going with it.

CT scans and bone scans in light of a BCR of about PSA=0.20 are relatively useless. The chances of anything showing up are very small and it might not be worth the risk (ie: radiation) of those tests.

They also talk about "the interval between RP and the first sign of PSA relapse." I'm not sure what that means. My PSA was never undetectable, but it was .01 and then 0.02. So was the 0.01 the first sign of PSA relapse? Or is something like 0.05 considered the first sign? Or maybe 0.10 since many PSA tests have that as the lowest score?

OK, I'm sure I'll have more questions later

Mel

Mel...hope Casey will clarify...but I believe in most studies the definition of detectable limits are defined as >0.1 so to rule out the subtle variances below the standard 0.1 detection threshold. However increases below the 0.1 levels are often used to monitor progression more closely and to act when appropriate.

I fully understand your concerns though.

Coupla quick replies to the recent posts (obviously I'm not a doctor , just an avid reader): ·          Yes, there are variations in the definition of BCR.   There really is no more authoritative source than the AUA, which defines it as ³ 0.2ng/mL with a follow-up conformational test result over 0.2.   ·          Separate (the verb, not the adjective) ultrasensitive PSA testing for patient monitoring from management decision making…they are not the same.   The very early possible trending that James might be seeing, for example, is not enough—from the work of the esteemed doctors referenced in the Choo report—to trigger SRT management actions.   There is no established “standard of care” for when to start SRT; but, when these reports speak of the benefits of acting early on SRT, they are talking about at the 0.5 to 1.0 ng/mL levels.   Not starting early generally means after PSA is above 2.0 ng/mL.  Furthermore, the report does also speak about SRT overtreatment which would occur with patients monitored by ultrasensitive PSA tests when the trigger for SRT is pulled too early; some increases at the very low levels of utrasensitive measurement capability are just natural variation (measurement variation plus biological variation) and will not result in BCR.   ·          Regarding the question/comment about HT & PSA suppression, a re-baselining of PSA result is necessary after starting HT, but the key to success is keeping the cancer from growing further which would be seen in a growing (albeit re-baselined) PSA result.   I think that for patients who do not [emphasis added] have indicators that their recurrence is systemic, the appropriate HT approach is “one day at a time”.   That is, don’t overtreat with HT up front; you can always add that step later.   The Choo report is an excellent, comprehensive paper on SRT, isn’t it? Post Edited (Casey59) : 9/2/2010 7:52:05 AM (GMT-6)

Most everything has been covered here... but I will say that when using the nomograms, I found I had better statistics with a little lower total dose. In the 65-72 Gray range was actually better than anything above that. I am guessing it all has to do with what statistics they have taken, and the fact that there may not be that many patients who have had higher dosages. You might want to play around with the total dose number and see.
I wish you the best, James
Jeff

Jeff,

Your post reflected something my radiation oncologist said about calculating the correct dose. They are aware that SRT is our last curative chance at stopping PC. Too low, and you blow the chance, too much - there's risk for damage and overkill. Part of the formula in the planning stage has to do with size/shape of prostate bed, the weight and BMI of the patient, their height, over medical history that might impact doseing, etc.

With my PSA velocity issues, they went for a higher dose (at least for SRT) at 72 gys delivered over 39 sessions. If delievered properly, the delivery side is pretty mechanical, but the planning portion is critical, and thats where a top notch rad oncologist, well experienced with PC comes in handy.

David in SC

It's a one shot. But just like in Sonny's recent event, if they find a metatisis or hot spot, they can do radiation in those areas, mostly for pain management purposes.

From where you live, what major radiation center is closest to you? I understand there is a good center in Asheville.

That's good then James, that will take part of the worry about it from you. The issue of SRT with HT, and SRT without HT, is just a confusing, and will have to leave that to you own judgement and opinion. There are good arguments pro and con. Be nice if something could be easy about treating PC, something just cut and dry.

Thanks to all for your concern and ideas, comments and suggestions. I have decided to take a 'wait for one more data point' approach, which will be the Nov. Uro.'s regular psa test. If it is up to at least the level of the GP's or above (I figure it might be around .12 (typo corrected after posting) by then from just studying the last movement) then I will have to pull the trigger on it. In the meantime, I think I have found my radiation Oncologist guy that I will be consulting and working with. The advantage of having this cancer center nearby is all the specialist guys are available. I have about gotten 2 names of medical oncologists for my short list of ones to maybe speak to. So, its wait and see. Only problem I forsee is the Uro I use now is one of those wait and see guys, and I mentioned last time that the trend was moving upwards and we might have to do something about it, he said' well, it's still way below the .5 that we use" I knew right then I might have some problems with him if I push for sooner. He has been willing to work with me up to now, though, so I expect he will be ok with it. If not, I can do my own referral, with my insurance plan. He started out with an 'old school' education about things, but I have brought him along nicely...

I was explaining to my wife yesterday that I might have a plan to save a bunch of money, as I am 20 months from reaching Medicare. My current insurance is a 10/90 plan, so will cost more out of pocket, I think. I am still studying that. I told her I might be able to make it to 65 before doing anything, using the national standards of .2 and one or two more .2's after. But I don't know that I could do that. I will be more aggressive than that, if I need to be, after talking to the experts. The radiation guy should help me decide, as he is a real whiz bang, according to what I can find about him. Heck, we might just go with a couple hits of HT to tide me over to the magic 65, then do SRT. (Joke there) Still, I hate waiting and it's gonna be a long three months.

Hi James

Reading your post I sense anxiety. You want the treatment the soonest and worry that the Doctors will reject it. I do not think that such will happen.
What you have to do is to discuss your wishes and believes, and be straight in the request. Ask him if he sees any wrong thinking in your approach for a sooner (earlier) treatment; ask what would be the difference if the cutoff number was a 0.12 instead of a 0.50. Your next treatment, if any, will be again under your final acceptance. They will request you to sign a note relieving the doctor from any responsibility. Be patient,… play golf, make a child, go out for a trip…..  but wait for the next PSA. It will give you piece of mind in the future.

I am not aware of the Insurance or Medicare system in the USA. In Europe the Social Security pays the full treatment for cancer patients, but we have to accept what is on offer. Newer drugs or unapproved treats are not included. It is our duty to find details of facilities and good practitioners. My SRT cost the SS an amount closed to 7,000 Euros. As a cancer patient you may also be included in treatments before reaching the age of Medicare. I would investigate that possibility with your GP. Do not delay the treatment you trust and believe, because of a financial opportunity. Do delay it if the PSA shows to be reasonably stable.

Wishing you the best,

Baptista