Writing regarding my dad. Worried and dont get any answers / just wait and see approach from medical team
Dad 63 years old now, was diagnosed with prostate cancer october 2022. 2 small tumors 5x3 mm was shown on MR, no spread shown there.
Biopsy showed gleason 3+4 ( 4 was 50%) Ralp surgery robotic was performed january 2023. Dad recovered well and first psa check 8 weeks later in march 2023 was untectable below 0,10
They confirmed that in his case its was very low % to get Biochemical recurrence ( did nomogram) but he should be checked every 3 month for 2 years. Standard process. He was happy and so were we.
Pathalogy came back after operation, T2 - no positive surgin margins, no cancer cells in seminal vesicals . No extracapsular spread. The only thing they found ( that did not showed in biopsy was that on the other side of prostate was a lot of micro cancer cells 3+3. And a focal/ very small part of inductal cancer. ( We got scared over that but they said it was very very small)
Pre PSA surgery was 7,6 and 9.We were able to leave this. Atleast what we thought.
Fast forward 4 months after last PSA check. And 6 months from surgery.PSA was 0,25 🥺 And he got tested again week after, it decreased to 0,18! We met the doctor/ urologist 2 weeks later and PSA was now 0,19.
They did not want to rule it out as biochemical recurrence and said we should wait and monitore it. Mo was kind of suprised and said that a low / intermediate risk cancer with low PSA, stage T2 and no positive margins should not behave this way. He said one scenario can be mets somewhere ( and I kind of died there). Mentioned also the word micromets. Probably lymf nodes.
But also this could be benign tissue from the prostate and no need to worry. So this is what we are waiting and dealing with! I have read so much and know that doubling time of PSA is not good and he have already had one doubling if we count the PSA was below 0,10.
And to have bcr within 2 years of surgery is not good either.
I asked for PSMA Pet Scan and they said too soon to have one. And Salvage Therapy also in his case. No need to overtreat him. But should he not have hormones?!
Anyone with similar experience? Just waiting and not knowing is so hard on us.I am soo close my dad and just gave birth the same time that he had his surgery. We need him in our lives many many years head. 🙏 Having worst case scenario is not helpful, I guess. But just need to hear some advice.
Thanks.
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Daddysgirl83
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I’m 64 years old. Gleason 10. Active and excellent health until this recent PC. Had RP 7 months ago. 12 lymph nodes tested negative at time of surgery. 90 days later PSA had soared to 156 with numerous bone Mets. Now on triple therapy and all numbers are looking much better. For example, PSA down from 156 to 1.2 after only 2 chemo infusions. But this is now a permanent condition for me. I don’t assume a short life expectancy although statistics say 5 years is median for my condition.
I try not to look back at what me or my doctor could have done different. But … my guidance would be to get as frequent a PSA testing as you can. And as much scanning as possible - mainly bone and CT. ADT is not fun due to side effects (hot flashes, fatigue) but in retrospect if I had known what I know now, I would never have trusted my urologist and surgeon with their wait and see attitude. I would have gone to a dedicated cancer center right away. We are now at City of Hope in Newnan Georgia and they are outstanding.
Thank you for your answer! But do you mean that 90 days after radical prosectomy your psa went up to 156? Or did you have radiotherapy? I mean did they not check that psa was undectable after surgery?
My urologist and surgeon said to wait 90 days after surgery before checking PSA because results before that time will still show some remaining PSA from before surgery. So at 90 day check it was 156. This is after complete RP. Gleason 10. My PSA 45 days before surgery was 34.
The only proactive thing other than mri guided biopsy 6 weeks before surgery that was done for me was a 30 day Eligard injection given a month before the scheduled surgery. I think the surgeon was overconfident in his abilities. He was all into dealing with incontinence and sexual function but neglected the cancer recurrence risk.
This doctor had done well over 1000 RPs and claimed to be a cancer expert and had great reviews but obviously he was not what he represented himself to be. I fired him and moved to a dedicated cancer center. I did also file a formal complaint with medical board of Georgia. I also investigated contingency medical malpractice suit but law firms that do that are looking for really obvious wins and don’t want to bother with something where they might or might not win. I also left some very unfavorable reviews on public websites. I thought these things were the least I could do so that other people might receive better guidance than I did.
At this point I only look forward and don’t dwell on what could or should have been. I only share the experience to help others.
I see! Good that you fired him and wrote that reviews 😞 I hate when medical team try to say they know best and treat you like a statistic rather than a person.
I understand 🙏 wish you the best and you are right its no point dwelling.
It isn't benign, but it may be that Pattern 3 cells were left in there. Most pattern 3 cells do not progress and may be left in place, just like active surveillance. It is important to use an active surveillance protocol, but it is unnecessary to treat at the moment.
When is it right time to act and maybe start hormones and SRT? Based on what the dr in Sweden say they might want to put him on Biatclutamine for 6 months.
You are probably confusing cases. Her father had RP 7.5 months ago, his nadir have been somewhere around 0.1, his latest PSA is 0.23 at a PSADT of 4.5 to 4.9 months. Do you still maintain that he doesn't need salvage therapy now and possibly never?
Meeting the drs tommorrow and I am going to ask to make him get a PSMA pet scan and it feels not good to just wait because I feel he is going to get over 0,25 next month.
The numbers tend to jump around - it is best if you get confirmation first. A PSMA PET scan will show nothing at such low PSA, and is a waste. It is especially useless for finding cancer in the prostate bed because it is excreted by the kidneys. Don't let your anxiety drive tests and treatment and create even more anxiety.
Get off your US horse TA and realize that they are in Sweden where PSMA 1007 is available (excreted via the liver NOT the urinary track). It is not approved by FDA (and probably will never be as the royalties holder is a German entity, so no easy buck there) but FDA doesn't have jurisdiction over Sweden, at least until 5 seconds ago that I checked it. Please refrain from spreading misinformation.
Are you aware of the Bolognia PSMA detection probability calculator? If yes, just dial in the numbers and you will not repeat what you have written above. It is very late here and can't be of any assistance with this. Sorry.
Tall_Allen and Justfor_ Thank you both for your feed back!
Met up the dr today and they are going discuss my fathers case at a medical conference next week. The urologist said this is somewhat rare and weird case where the psa is rising soon after RP due 3+4 and 3+3. She said its not possible its some cells left behind even with negative margins on the pathology report. She said this time ( another dr than last) that distant mets is unlikely the case. I dont know who to listen to.
But they are aiming for PSMA Pet scan and said its 30-50 % something will be seen at Psa 0,25-0,30 and she said be probably ready for salavage therapy within some months and maybe also Bicalutamide/ Casodex atleast 6 months either way if nothing shows.
Tall_Allen Justfor_ Today another dr called and said they are scheduling a PSMA Pet after a conference. Dad asked what he is guessing it is, he was hesitant but a spread to lymf nodes might be the case even if the MR did not show anything 3 months before surgery.
He said its still maybe curable. Is it true if so? What we wonder is how can we effectively handle in case its so? Radiation and stronger meds? Or surgery of the lymf nodes?
Daddy wants to do everything to get rid of it. And before surgery he asked them to remove them and they said : no nothing is found there. 🤦🏻♀️
The crucial point is to NOT detect any distant metastases, including lymph nodes outside the pelvic field. In that case salvage RT (sRT) will notmally follow accompanied by a period (of debatable duration) of hormonal treatment. Removal of any lymph node (lymphadenectomy) has very low success rate. There is an experimental surgical removal (resection) where the surgeon is guided/aided by a tiny sensor. This type of surgery has a success rate of about 50% in line with the average sRT success rate. To my knowledge, it is only offered in Martini Klinik, Hamburg, Germany and it is privately paid. But let us not try to forsee the future before PSMA PET/CT. Also, read again my first post regarding digital scanners and lutamide PSMA excitation.
PS: The latest and greatest technology machine for RT is Elekta Unity. Karolinska doesn't seem to have one. Uppsala University Hospital Sjukhusvägen , 751 85 Uppsala, akademiska.se/ has one. Check if you can be accepted there.
I take it for granted that you mistakenly wrote: "2 years of surgery" instead of 2 months.
My general impression now:
Your medical treatment has been suboptimal. I base this on the first PSA that was to the first decimal place (<0.1 you wrote). After RP PSA tests should be to 2, or better 3, decimal places dubbed "ultrasensitive". Standard PSA test post RP is such a rookie practice that I discard this test altogether. It may be a gross lab mix-up. From the following 3 PSA tests I tend to believe that your father's case is what is referred to as "Persistent PSA". He should have a PSMA PET/CT _ASAP_ even if you have to find another doc. My detailed take on the subject can be found here:
Finally, make your best effort so that the PSMA scan will take place on a digital scanner. At low PSA and everything else being the same digital scanners are 30% more sensitive than their analog (older) counterparts. Two to four weeks of a lutamide before the scan help increase the PSMA expression of the cancerous cells, thus improving the detection probability. Enzalutamide is commonly used for that, but if not available good old Bicalutamide can serve as plan B.
But the thing is here in our country they say its undectable when its below 0,1. They have skipped ultrasensitive psa tests all together here.
Okay so we should aim for Psma Pet Scan then. However should he start taking hormones before that? They said it was not a persistant psa when I asked due they referred to being undecteable 8 weeks after surgery ( meaning under 0,1)
I am wondering how a T2 and minimal tumors can spread like this?
His PSA numbers point differently. From 0.18 to 0.19 in 2 weeks time, this looks like more a 5-6 months PSADT. If it was 2 months, his latest should had been 0.21 or something. Set aside the first at 0.25. If it was to be considered as valid his latest would had been shy of 0.30. His PSA values are all over the place. Can't derive a PSADT from them. Five to six monotonously increasing two decimal places results are needed for deriving a no-nonsense PSADT in order to filter out the 20% precision of the test by implementing oversampling. You only have 2 (0.18 and 0.19) for the time that look consistent. You need more.
Thanks. If we consider the 3 latest time samples (0.18, 0,19 and 0,23) then the PSADT comes up to about 4.9 months. Adding the so called "undetectable" sample at its most favourable for a long PSADT value, i.e. 0.099, it comes down to about 4.5 months. Lastly, if we were to align this <0.1 sample to yield a PSADT as per the first calculation this would have been 0.106 which is in line with the precision of the test (20% nominal). Extrapolation leads to 0.26-0.27 in one month. Time for a PSMA PET/CT scan.
Thank you for calculating!! Yes I am discussing with the drs about a PSMA Pet scan now soon. I am worried that this can be distant mets not local one or oligometastatic. Is there somehow we can know a pattern for that? I mean his recurrence is so soon after surgery. But how can the tumor that was so small all localized i T2 stage in the prostate (3+4) behave like this? 🥺
pT and Gleason Score staging is not an exact science. It is a statistical derivation. And in statistics a 99% certainty leaves out the unfortunate 1%. From the papers that I have reviewed there is a probability of 15-25% that the source of the PSA is distant or distant-as-well to the sRT irradiation field. Ony way to have a better picture is by PSMA scan.
And please stop thinking that he has "recurred so soon after surgery". He is Persistent PSA from the get go, but your stupid system with "undetectable" equal to <0.1 just hides it. I don't remember the exact probability values, but if the first PSA test comes back being above 0.03, BCR is in the cards. Also, a large European study incorporating 1000 of cases concluded that if any subsequent PSA test breaches 0.06 there is more that 50% probability that a BCR will sooner or later follow. Doesn't the entire medical system of your country know all these and are still stuck to some 30 years back when the analyzers produced results to only the first decimal place?
⁰Was 20-30 years ago. Not any more! I had high respect for the Swedish medical system (Karolinska Hospital is world class). Now, this "undetectable" thing has created doubts within me.
There is the possibility that we are lost in translation. As the term implies undetectable means something that can't be detected. Current technological Limits of Detection (LoD) for the two labs I use are 0.003 for the first and 0.01 for the second. So, <0.1 is NOT today's LoD, it was during the late 90s . Period. BUT, there is another limit set administratively. The lowest PSA for additional treatment like sRT. This used to be 0.2 but now it has gone down to 0.1. Consequently, what your docs meant isn't that they couldn't give you the PSA value, but they didn't want to, as there was nothing they could do then. Two very different things. One technological the other administrative.
I am wondering if tumor cells 3+3 left at the prostate fossa can behave like this? He had serveral small tumors 3+3 which we did not know from biopsi or MR and they did a nervesparing on that side. Guess we have to wait to maybe know😞
Your dad and I have arrived at a similar point in very different ways but here we are. After almost 7 years post RP & SRT of undetectable PSA I got a .1. I had it redone a week later just to rule out lab error and it was .14. Five weeks later it was .12. So I do appear to have BCR. But from everything I've read, and after talking to my Rad-onc, Med-onc, and a uro friend, having a PSMA scan before PSA .3-.5 is a waste. So we both are in limbo for awhile.
No. RP 2/02, SRT 7/16, undetectable since until recently. I thought I was done w/ this. I've only had ADT for 6 mos. before, during, and after SRT. Not that I want to go back on it but I tolerated it very well. Not a single hot flash! Age 72 now.
I had a radical prostatectomy with a Gleason 3+3 (that was upgraded to 3+4 in the pathology report), negative margins, no ECE, SVI, or LNI. In other words, it came out cleanly.
But 54 months after the surgery, my PSA returned at 0.05 ng/mL in September 2015. Like your father's PSA, mine bounced around and it took until December 2017 to reach 0.10 ng/mL. It took until July 2021 for it to reach 0.21 ng/mL.
Because my PSA doubling time was so long, it made sense to just monitor without additional treatment.
Like you and your father, I was concerned about the impacts of salvage radiation, so I really wanted to have a PSMA PET scan to guide the radiation oncologist. I went for the scan in November 2021 when my PSA was 0.22 ng/mL.
The scan results were inconclusive at that PSA level. On the one hand, they didn't "light up" which was a good thing, but that they didn't show any hot spots also meant that the radiation oncologist didn't have any usable information to guide his radiation.
My PSA started to accelerate in its increases, and by May April 2022 it had risen to 0.36 ng/mL. It was time to act, so I did 35 sessions of salvage radiation with concurrent hormone therapy last summer.
My post-SRT PSA was 0.13 ng/mL in March 2023 and 0.11 ng/mL in May 2023, hopefully indicating the start of a downward trend (my radiation oncologist said it could take 18 months or longer to know if the SRT really worked).
Will delaying the start of SRT as long as I did be the right decision? Only time will tell. But I do know that I did have six years of high quality of life while we were monitoring.
As Tall Allen has mentioned elsewhere in this thread, I believe you could monitor for a while longer to see if your Dad's PSA settles down where a true trend and PSA doubling time can be established, and then go from there.
But I also understand all too well the emotional toll that's taken waiting for each and every PSA result in a potential recurrence situation.
I wish you and your father the best as you navigate this new situation.
Hi. Yes, things have changed and not for the better.
My PSA reversed its downward trend, going from 0.11 in May 2023 to:
0.21 in October 2023
0.33 five weeks later in December 2023
0.37 in January 2024 (higher than when we started salvage radiation therapy)
I went for a second PSMA PET scan in January 2024 when my PSA was 0.37, and there were no lesions detected.
I met with a medical oncologist (MO) in February 2024 for the first time to discuss what's next—whether androgen deprivation therapy (ADT) would be in order, or if we wait to try and see what's happening first.
We agreed to do another PSA test on 1 May 2024 and go from there. The MO was open to doing a third PSMA PET scan in about 6 months to see if we could determine where the cancer was. If there was one or two isolated lesions, perhaps another round of radiation aimed directly at those lesions would be in order before considering ADT.
Thank you for reaching out! Did you do ADT with SRT? How soon after SRT did the numbers go up? I think Sweden has that approach that wait and monitore before you do SRT, especially if gleason i 7 or 6. We are probably waiting for another PSMA pet scan when PSA hit 0.4.
I really hope everything goes well in your journey. 🙏🏼
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