Had RP, then salvage RT with 1 yr of ADT ( Lupron ) fall 2017 - IMRT at SMK.
For the entire yr, PSA was non-detectable...
12/17/18 PSA is .19 ---- I'm freaking out - but I do a lot of that, just in my DNA.
I could never understand why any residual PSA was looked at as the most horrible thing that could happen after treatment.
As we all did I went thru hell with getting this disease - but why not wait to become symptomatic - the worrying might actually cause in some cause more harm...
Sorry for rambling but I'm tempted to just place this in God's hands and live my life.
Could I go back on ADT, to lower my PSA 14 basis points and go into a zombie state of mind - sure, but is it really worth it?
An interesting point in my opinion.
SMK has a few ' prediction tools ' nomograms - they say the following for my #s - GS 9
' Post RP ' ----- 15 yr prostate cancer-specific survival rate is ---- 64% !!!!! Mine would probably be higher since I had RT ( IMRT ) and ADT. I would take those odds.
One other says:
Titled ' Male Life expectancy survey ' to be used if a man decides not to do anything.
10 yr survival rate would be 47%
15 " ----------------------------------23%
Thoughts, ideas comments much appreciated
Ken
btw - really nice Dr. but could he have called on 12/26?
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hello spinosa - 67 my age ---- lived a clean life, still hit the gym daily - married my best friend, we were in kindergarten together--- life is good...
I believe you have a PSA test coming up in January. I'd wait for that test and see what the trend is (stable, up, down). What was your PSA prior to starting salvage RT?
Hello and thanks - age was 66 - and PSA ( with 5 months on Lupron ) prior to IMRT was non-detectable -- was that level from 5/17 to this last test on 12/17/18, that one was .19 post SRT.
"Last Lupron shot was on 2/2/18" So this was a shot for three months that lasted till 5/2/18. After that it takes over six months for testosterone to recover. If it does, you have to expect that the PSA value is higher than while Lupron is working.
In this trial they defined "Freedom from progression was defined as a PSA nadir of +2,.."
So if you apply this definition, a tumor progression could be determined if the PSA value rises above a PSA value of 2. So you need no treatment while this does not happen.
I would start with ADT when the PSA value rises above ten. But that is my opinion, I think you do not need to start earlier. The value of ten is based on this trial:
Thanks again - worry is my middle name --- so many studies and opinions out there... guess that's why they call it ' practicing medicine ' -- I'm trying not to go crazy over this, but living from a simple blood test to the next one is difficult for all of us. I ran into a guy during RT at SMK and after 10yrs!!!! PSA returned and he was back in for RT.... he was in shock.
I have a constant PSA doubling time. This means I can calculate in advance what the result of the next blood test will probably be. Once you were right a few times, you are no longer anxious to get the result of the test. You will know in advance what the result will be.
So try to calculate the doubling time from next results you will get. You probably cannot do that with the values you have now since you had ADT. Use this calculator:
Thanks, GP ---- there are so many studies, inputs, and opinions. One guy on this forum, I believe is knowledgeable, says 2 consecutive PSA readings of .2 and above indicate BCR - my RO says 3. This same guy, says any level other than zero PSA post SRT, indicates failure - not cured. I think ur study from ASTRO might be more reliable than my own RO - overtreatment, at less than 2 as pointed out in that study may not be called for. I will certainly show him the study - no single MO or RO can be up to date on everything - but my guy is at SMK - he's so busy - I don t think I ve ever spent more than 15 mins with him, and that was at my 1st visit. I assume u had SRT - is it expected if those who do, all are expected to be a zero? Mine was ' regional ' -- my 2 bones were negative, as were my 2 CT...stage 3.
International consensus defines recurrent cancer after RP by two consecutive PSA rises > 0.2 ng/mL. However, you already had SRT and the question is now, when can you define "freedom from progression" after SRT. There is no international consensus about that so there are different opinions. I cited this study in which many clinics from the U.S., Canada and Israel took part in.
There is also no consensus when to start with ADT after failed SRT. The European guidelines recommend a late start since the studies they refer to did not show a difference in overall survival between an early and late start. And they want to avoid unnecessary side effects for the patients. Many doctors recommend an early start, however, to avoid discussions with the patient and to "do" something.
My MO at MSK wanted me to start ADT when my psa was at .36 after failed surgery and IMRT. his approach was my PSADT which was 5.5 months at that time (August 2018).
This disease is so frustrating, I don’t know if I should go by what you say which I like ( psa of 10) or listen to my very recommend and respected MO.
In your case I would wait for the PSA value to rise above 1 so you will have a good result with the PSMA PET/CT. I expect this will show lymph node mets. Then you have to decide if you want to treat these in the hope that this will delay the disease or just start with ADT. Better yet, do both.
Usually the patient visits the MO and says: my PSA is rising and I am afraid to die! What can you do for me? So the MO starts with ADT, the patients sees a decline in the PSA value and just moans regarding the side effects.
If you take the study I mentioned to your MO and say I would rather wait till the PSA value gets above 10, the MO should answer: if you want, then do it, I have no good data that it makes a difference if you start with 0.36 or 10. (There is even more retrospective data available that it does not make a difference)
Another alternative would be to use Bicalutamide for ADT. This may not be as effective as Lupron but has less side effects and keeps the PSA value low as well. Take tamoxifen for the side effects.
Good advice in general to AKH1 in my opinion, if in fact, there is no ' evidence-based ' information about starting at .36 vs 5 or 10, why in gods name would someone pick hitting a PSA at .36 or thereabouts? Esp, if what u say in your response to him ' There is even more retrospective data available that it does not make a difference' -
GP24 - do u have that article that I could share with my RO?
TY very much.
btw-
My uro says, he would hit it at 0.1 - I know all individuals are different but it all boilings down to studies, nomograms, and trust in the knowledge of you Dr.
If I'm armed with this information I can then weight in with some level in intelligence as to what to do.
Post RP I was at .81 --- my own PCP said and questioned, was it really worth chasing it down lower? He has patients with PSA of 40s and 50s and they do nothing - except smile and have a decent QOL --- we ll all figure out what is best. good luck to u as well. I ll do the PSA in Jan, but if it close to 0.19, I just might accept that is my new nadir - when I tell my PCP he'll think I m crazy to chase a 0.19 - he might be right, esp having no symptoms. Ken
your first question was: should I worry if the PSA rises to 0.19 after terminating ADT with Lupron. My answer was no and I cited a study to prove that.
Now you ask when you should start with ADT: early or late. There is no definite answer to that based on evidence.
You write that your PSA post RP was 0.81 ng/ml. This means that the tumor was not confined to the prostate but has spread. The radiation may have helped but I am not sure. So ADT will be in your future, sooner or later.
ADT stops the tumor from growing and shrinks it a bit. But it will not cure you, just stop the disease for several years. Now the question is, when should you begin using this brake lasting several years? I cannot tell you the right point in time. Personally, I am concerned about QOL and therefore do take risks to avoid side effects.
I've learned more from you then I have in the past 2 yrs from my Drs. --- nice job and I will certainly use. All of it. .
I see nothing about you on your profile and I was and still am hesitant to write something in there - but I did. I'm assuming, ( no real detail needed ) but we might be in the same boat?
I tend to go along with you and wait, but I will need to see how fast the PSA is moving before hitting the brakes.....
My best to u and again, thanks for the education... Ken..
I propose that you ignore those "survival tables." I am. We are all men, individual men with all sorts of pre-existing conditions and current conditions, too. I have been on ADT for 6 years. I have had a RP, been through radiation, chemo, and now more radiation. I feel great! You can to...keep that positive attitude...the glass is "half full." Focus on what you can still do.
Congrats tallguy2 ---- wish u many, many more yrs of continued success -- I recall talking to my PCP ( of 25 yrs - extremely logical guy ) just after surgery, prior to SRT --- he said he would not be chasing down a .81 post surgery PSA. Tells me he sees guys with levels of 40 and above doing just fine - QOL with the family is so important to me, all of us --- I was a zombie-like person while I was on Lupron - just might follow that Tim Mcgraw song and advice ( live like you were dying ' cause we all will at some point. There was no question about the IMRT, I was all in for that but the lupron hit me hard - does anyone one know if I go back on some ADT, could it be something more tolerable?
I have had no issues with the ADT. When my wife said she would love me no matter what (and I lost the "what" thanks to ADT) I could move on. The venlafaxine keeps the hot flashes to a minimum. Swimming laps help with keeping me mentally and physically in shape (although there is no denying that ADT makes it tough to lose the belly fat).
You can do this, ken12491. Stay strong and live in the moment.
If you ever need to go back on Lupron I have found the 30 day shot to have fewer side effects than when I was on the 90 day. This was recommended by my oncologist and it has definitely helped. I hope your numbers stay low my friend! Have hope and stay strong!
thanks, Rick, good idea- great advice --- so the 1 month ADT would be a lesser impact on mt QOL? Makes sense - I was on the 3-month dosing...It really was the loading dose ( a double shot ) that knocked me on my butt. Good point and one that I forgot about...
Gleason 9 is a bitch, plane and simple. See my profile. We niners will be fighting this for the rest of our lives. New normal I’m afraid. Just stay with it and live your life !
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