Hi, I had Davinci R.P. in Feb 2014. Gleason 4+3. Margins clean. T2b. Salvage IMRT 40X Sept 2015. Psa undetectable since June 2019 @ .02, .03, .04, .03, .02 tested every 2-3 months. June 2020 undetectable. Sept 2020 psa .06. MSK recommended to wait till psa hits .05. I am retesting in 2-3 weeks to see if psa changes. Taking IP6, Pectasol, Mushroom complex, metformin 500 mg 1-2x/day (not diabetic, HgbA1C is 5.3)
I would appreciate any thoughts, support or recommendations. Thank you.
Rob
Good idea to wait and retest, looking for a definitive pattern, imo.
Thanks will do.
Man .... you sure have this stuff wired, you have such great knowledge and great answers. You da man 💪💪💪👍👍❤️❤️
Your PSA is low, if you are concern discuss with your MO to get monthly PSA for 3 or 4 months and see if there is an increasing trend.
I test (almost) monthly and interleave two different labs. Up to now, no discrepancy between the two. Would advise that you take your retest to some other lab.
Justfor brings up a good point, Sometimes the labs used are changed and while this shouldn't make a difference sometimes it can. Even if it seems you are going to the same lab they might have changed. With your PSA numbers all less than 0.1 taking time to look for a definitive trend to establish itself seems lie a good idea.
Also, be sure you are not taking any supplements that might interfere with the PSA readings. So far, the list of substances that may interfere with PSA tests, creating false negatives, includes
----biotin,
----curcumin,
----genistein,
----EGCG,
----resveratrol,
----capsaicin,
----saw palmetto,
----pygeum,
----beta-sitosterol, and
----statins
you have had 6 years of remission. Now need to see if there is a trend to the curve. Best Wishes.
Your Psa tests show the level went up to 0.02 at 5 years after RP then 0.04 then back down to 0.02 last June. Now its 0.06. MSK, ( whoever that is ) recommended waiting til Psa goes to 0.05, which is lower than 0.06. I would only be alarmed if Psa went to 0.1.
I can only assume Psa was less than 0.01 in the 5 years of non dectectability.
If the doctor who did the RP left only 5% of tissue behind with prostate DNA, then its always possible that small amount will generate Pca over time, just like the majority of tissue that was removed. But your Psa is bouncing up / down, and usually it ONLY goes up if there is Pca present. I know you are worried about your Pca, but you can't even get a good scan to see where Psa is coming from. Could be a distant spread; nobody knows - yet.
I know men who had RP and that seemed to be the end of their Pca problem.
But in many others, Pca "re-occurs", ie, continued onward from tiny amount of Pca left behind in RP, or from spread, or develops in small amount of healthy tissue left behind.
The fundamental problem with RP no matter how well its done is that Pca is not far away from tissue joined during surgery.
In Melbourne at Peter Mac they say they offer a Lutectomy in some cases where I assume surgery is very difficult. In 2009, I was in the 1% of Pca patients where uro doc opened me up and found he could not proceed to remove my PG because Pca was outside the capsule, and binding to it, thus obscuring his view of what he was doing, so he would not proceed.
So I was then assigned to 2 years ADT and EBRT after first 6 months. That didn't work either. But I heard about other cases where doctors opened ppl up to get rid of cancer and could not proceed, and so I concluded maybe my uro found more than 1% of inoperable Pca patients, but I never saw his private records; nobody gets to see any records doctors keep about their successes or failures. Anyway, use of Lu177 for 1 or 2 shots just after diagnosis for presumably "difficult" cases is not a bad idea especially where a lot of distant spread is found and where these mets show up in PsMa scans. Maybe later the docs might do an RP, it seems its possible because the LU177 radiation does not damage healthy tissue so it can be operated upon.
I doubt you'd ever benefit from having Lu177 until scans show otherwise. Lu177 was first used for advanced cases where Psa was in hundreds and scan showed Pca in nearly all bones and the man was bedridden. But you are many years away from that so I see no reason to worry.
In an early Lu177 trial at PeterMac in 2016, 30 men with advanced Pca were treated, and about 70% got a benefit, ie, they lived an extra year or more rather than just 2 months more. They'd all had chemo fail. Some men got no time benefit.
I could see no point in dithering around if chemo failed after 4 shots, which it did, and I began Lu177 with Psa of 25 and bone mets no larger than a pea. I had 4 Lu177 shots before May 2019 at 8 weeks apart, and Psa was 0.32 by November 2019, But then Psa zoomed up like it does so often, so I am having more Lu177 now, and Psa is zooming down. I have no idea if the Lu177 I have in these months now will give me a much longer time between now and recurrence.
But what matters to you and me, and to other men is their quality of life. Nearly all of us grow old, and that in itself means we can all say " The older I get, the better I was" We all react differently to aging, and some worry more than others, and many have worried from age 2 days, even though, if they could speak, might say, " The older I get, the better I'll be" So we must come to terms with aging. Part of that process includes getting illnesses that could kill us in an hour or over 20 years. Maybe we get several conditions, all things we may worry about, and in many cases there's no remission from these conditions. I've got to the point where I carry on living and never loose sleep because I might die from Pca. I live as if I don't have Pca. I do enough to try to stop it, there are not a huge number of options left, but are some.
Meanwhile, at 73, I cycle 200km + a week on my Canonndale road bike, at average speed over 22kph most days, I have same slim figure I had at 25, BMI 22.5, resting HR 48, waist 89cm, and can mow grass, clip hedge, do housework and craft work and I can say I know a lot more men are nowhere near my level of health. I don't need anyone to care for me. I live alone without relying on alcohol, or a wife, and I take no painkillers.
Not all men I know have the natural ability to get themselves in good order to get the most from life once they get over 50. I could not let bad habits become permanent.
I have tried a number of alternative remedies that were said to kill Pca, but not one substance had the slightest real effect or placebo effect on me, so I just gave up on the large amount of quakery being practiced by some for those who may believe in witchcraft, sorcery, or prayer. We exist, Nature exists, and doctors exist. Doctors have only limited tools to help us get to 100. So I don't worry. In the local morgue, if I die soon, John Azardit will say to his mate Arnold Shakabone , " Oi, Arny, git over 'ere mate, I got a real good lookin corpse 'ere"
I'll probably manage a smile.
Tall Allen is right, maybe wait a little while and see wot appens, it seems ya cannot stop Nature doing woteva, but time may come when docs may be able to slow Nature down. Had I not gone to doctors, I wood have died 6 years ago. I quite like being alive. But I'll accept it when I must un-live.
Well, I thought it was going to be a nice sunny spring day at 7am, but its clouded over at 8am like winter, so I'll head out to my shed to finish something I was doing yesterday. I'll get a bike in if it don't rain.
Patrick Turner.
Patrick, thank you for your time and effort in responding to my post. I will take your advice, and so appreciate the information. Sending best wishes to you.
Rob
We don't have the control we would like to have to get remission from Pca.
I just studied enough to know what was available and where to get it, and asked my oncologist if I could be referred to what I thought might help. When PsMa Ga69 PET / CT scans arrived in Australia in 2015, and with Lu177 you could get in Perth, my oncologist knew very little about such things. The Canberra Hospital where he works did not have software to view PsMa scans. But since 2015, he knows a lot more by observing my progress, and learning from the consultations he has with experts in latest cancer therapies. The hospital upgraded its computers. Lu177 is not available here where I live, but is available in Sydney, only 4.5 hours away by slow train subsidized by Govt for pensioners like me. The treatment I get is second to none I have heard described here about clinics in Germany.
Some patients have driven 300km to Sydney to get Lu177 which takes from about 9:30am to 3:00pm and then they drive back to Canberra, and my doc at Theranostics Australia said he had a 90yo patient who did this. Lots of driving in terrible congested traffic.
I doubt you need to get Lu177, or anything, until Psa goes up a bit more, and enough to show up in scans. Doctors just don't know what to do apart from putting a man on ADT if there's any rise in Psa after initial therapy. Normal protocol here is that after Psa cannot be held below 1.0, and begins to double each 2 months, then Cosadex id added, and I got 6 months of low Psa before it went back up to 6. Then I had 8 months with Zytiga before it went to 6, then I waited a month before chemo, Psa was 12, and after 12 weeks and 4 chemo shots Psa remained over 45. PsMa Scans showed increase in size and number of soft tissue mets in lymph nodes but not in organs, but bone mets became numerous. You may or may not be years away from what I saw happened to me and other men.
So good luck,
Patrick Turner.
Dear Patrick, good luck and best wishes to you in this difficult journey. I would like to stay in touch with you as I continue my journey. I'm located on long Island, NY a suburb of New York city. Stay strong. Rob
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2nd PSA Post RP
PSA still rising after RP and SBRT.
Whats to Follow after bad biopsy after RP
Duration for Salvage Radioteraphy after RP
