So it’s been a month since my last post-therapy PSA test went off with a 0.15 where it had been undetectable at < 0.05 for the last year.
Yesterday was my second test, a month later, and the results were 0.29.
Checking now with my Stanford oncologists on next steps and welcome any input.
Hoping to get an advanced PSMA PET scan to see if we can find the source and hopefully treat it. Prior treatments included RALP, EBRT, and 18 months Lupron + Zytiga.
Perhaps if they can see something clear another radiation zap is possible.
Wondering if this counts as a one-month doubling rate, which I gather isn’t a very good prognosis.
Also starting to now figure out whether the best likely systemic course of action is the early return of ADT, or to wait longer.
Oh…I should add that I feel great and my T is back and at 755…which might explain the new sports car in my garage.
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PGDuan
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You should not calculate the doubling time with undetectable as the base value.
I would wait for a PSA value of 2 or 3 to make sure the PSMA PET will detect something.
I would not start with ADT early. The European guidelines recommend to wait until bone mets can be detected with a bone scan. You can start earlier if you like, however. But this will not make you live longer, a number of studies show.
I've seen some very long numbers from time of initial recurrence until detectable metastasis, using conventional bone and CT scans, here is one........
Dr. Walsh in his "surviving Prostate Cancer" advises waiting until the earlier of detectable or symptomatic for metastasis....knowing full well the loss of QOL with ADT..and has been mentioned, no proof of substantially greater life expectancy with earlier ADT. But others disagree!!
Congrats on the 755. That is good news. Focus on the QOL for now
You need at least 3 measures over 0.1 to calculate PSADT.
There is no definitive SOC. If there is a detectable met, UCLA has a clinical trial where they zap the met and put them on limited term ADT+ Xtandi + Erleada. If there are no detectable metastases there is a different clinical trial where patients get limited term ADT+ Xtandi + Erleada.
Your doubling time is indeed about one month going from 0.15 to 0.29. What is missing here is the curve it follows. With only two samples you have no clue about it. With three you may be able to tell between linear and higher order curve. An exponential rise, typical for cancerous proliferation, may need 6 or more samples for a high regressional fit. So, don't take this one month DT at face value until you have more samples. The PSMA PET CT is an excellent way to proceed.
Hi DP46, I was 52 at DX and in excellent health otherwise then and am now 55. My GS was 4+3, 70% pattern 4, 25% 3, and 5% 5. Post pathology was pT2N0M0. 15 lymph nodes were clear and clear margins. It was just the original persistent PSA after surgery that indicated something was missed. Axumin scan identified 2 lymph nodes at the time so I had EBRT to the prostate bed with boost to those nodes.
My history with this disease is very similar to yours. Early this year, after four years of undetectable, my PSA returned. It was .2 in March. Now it is .6. I had and have mixed feelings about waiting for my PSA to cross my MO's next step threshold. I am scheduled for a PSMA PET\CT scan at the end of the month. I have been advised by several people here not to wait for a next step. Others have said waiting is a moderate approach to treatment. My MO is a highly regarded specialist, so I have fought against my impulse to "ADT" my cancer back to sleep. Fate, if you believe in such nonsense, has a way of guiding you through conflict to resolution. Outcome is something only the future can see.
Thanks for sharing your experience with this. I was wondering how you obtained the PSMA PET? I’m ok going out of pocket in hopes something can been seen and zapped before waiting too long in hopes early identification and local treatment might still push this further down the road without ADT.
I'm not sure yet... one of my unanswered questions. My MO is at Duke. He emailed me saying a PSMA, but the appointment doesn't specifically say what the imaging agent will be used. My Medicare Advantage plan covers PET/CT, but doesn't specifically say anything about imaging agents. It is difficult to get clear answers.
I replied to PGDuan about PSMA scans and my scenario. My medical team wants to wait a month for another PSA test, than bone and CT scan, if negative results than PSMA scan. This to me is really backwards. I was told this is the FDA approval (and Kaisers criteria). As far as I am concerned <.1 in March and now .5 is evidence enough for a scan now. I would pay for the PSMA as well. We need to be our own advocates, just need the right way to get it done. Any advice you may have?
PSA testing is inexpensive and trivial. You can't have too many of them. You can get one right now which can prove the validity of the latest one (0.5). Very roughly, you had an 0.4 increase in 5 months. One month's worth of waiting will add, at least, another 0.08, for a total of +0.58, which is close to the 20% accuracy of the test. To sum it up, a PSA now, probably with another lab reporting to the second decimal point, can only ring a bell regarding a gross error. In the event the 0.5 +/- 20% is thus reaffirmed, the proposed one month later will show if your cancer is strolling or galloping. Both have their own value for showing something.
Re. PSMA PET CT if you can afford paying out of pocket, proceed right after the confirmatory PSA test anδ ignore, for the time being, the bone and CT scans.
The situation you have and other posts are right in line with what I just discovered about my psa rise. Would really appreciate some advice as well. Will post some more info and hope to get some great input and give some as well. Wish all of you well
Us brothers are here to help each other on our journeys. Some much more intense than others and it is great to have each other.
Just an update with my journey for those whom are willing to share. My first post a couple years ago, now 66yrs, feel pretty good, having some hard times with sleep with recent news and just coping with all of this as we all go through, some more than others.
RP March 2020, Casadex in June (my decision), 6 mo Lupron in June, 34 RT july to sept prostate bed and pelvic lymph nodes (my decision). Last CT scan was negative
PSA was 7, Gleason 5+4, T3b, margins were clear, positive for BRCA 1 which has had my daughters both go through mastectomy and hysterectomy surgeries for preventative care. Hell I brought to them with my family history makes me feel terrible, no control.
Last test blood work good,Testosterone 365
The kicker, March PSA <.1 Kaiser (won't do ultra sensitive unless I request it) PSA test I just got is .5. I feel this is a big jump. My urologist and Rad. Onc. suggest to get another PSA in a month for doubling time and then see if I need a CT scan. I am pushing for a PSMA since Kaiser finally offers it. But was told it is reserved for patients with no evidence of cancer with routine scans. Now this is absurd, why would any one with my history go through a sub standard scan that could miss something and jump right into more ADT as suggested by my Oncologist and put it to rest as one of our fellow members mentioned. I want to get at this quickly with all of the tools and medicine available. I am not one for waiting around for something to happen and get to work on it.
Guess being a general contractor has a little to do with that.
O and yes got my self a toy as well, sold my Z06, got new Roush Mustang, because I wanted to.
You have done all of the right (best things) so far. Dammit so unfair, this monster. PSMA PET may show something “actionable”, but it well could be too early. My PSA was .25 when Ga- PSMA at UCL showed two PLNs that I subsequently treated with pelvic RT. But you have already had PLN field treated, so it may be growing out of the “barn”.So I would wait a bit until PSA gets to 0.5 to have a better chance of showing itself. Until then, I suggest getting that sports car out of the garage and onto the open highway and enjoy your turbocharged testosterone level.
When to go on long term ADT is a conundrumsince we know that it inevitably leads to castrate resistance. Perhaps you could get some “mileage” out of bicalutamide mono therapy (or combined with dutasteride). It preserves some testosterone while suppressing the cancer. It worked for nearly 5 years for me, and longer for some others.
The PSMA scans should be more widely available next year and more indicative for you. Until then, enjoy the ride. Paul
Thanks Paul. Sounds about right. My Stanford team just got me scheduled for a PSMA PET MRI but as noted I’m not sure what we’ll find — if anything — or what the treatment plan will be. I presume if something is visible we’ll consider focal therapy, and otherwise determine whether to systemically treat early or late. Lots of controversy on this. Key question.
Do you know any downside from taking the PSMA PET too early? Maybe insurance will only cover 1 time?
My update thus far for past month, had CT and bone scan that came out clean. My understanding from my Oncologist is that Kaiser will not give the PSMA unless you have the CT and bone scans first due to the availability of the material used for the injection. Anyway I got my PSMA scheduled for the 21st of this month, my PSA is now .9
A little update from my new adventure. Had bone and CT scan which was clean. Just got back PSMA, found focal spot of uptake in the right hilum in the chest suspicious of metastatic prostate cancer, no other findings elsewhere. Got video chat on Monday with my radiologist that the this may be amenable to focal radiotherapy.
Guess I will no more on Monday.
Hope you and all my other brothers out there are doing well and hanging in there.
Thanks for the update, sorry for the unusual finding. I am anatomically ignorant, so I had to google hilum. From what I learned, don't feel that they can perform a biopsy on the suspicious spot. Nevertheless you may discuss this possibility with your docs. The "bright" side is that at least you are not any longer chasing black cats in dark dungeons. My sincerest wishes.
I decided to follow you since I am in the Kaiser N. CA system. I have had RP, SRT, with 2 years of Zytiga. Been off ADT for 6 months now, still undectible. Same for T. I may follow in your footsteps someday soon. Am curious how Kaiser treats you. Good luck with your next decision/treatment!
Kaiser has been great, radiology dept. has been really good. Dr.Giacalone from Dublin Kaiser has been right on it with me for quite some time, gets right back to me which is comforting to know he works with his patients. Will keep you posted. Don't hesitate to ask any questions hope I can help and I hope that I can do the same. Nice to know we are all sticking together though this. Thanks for responding
Keepinon and my other brothers:Had video chat with radiologist. Uptake is in hilum just outside of lung area, probably in lymph node. Will go Friday to get mapped out for 5 focalized radiation treatments every other day. Got a Disneyland trip with the family and may postpone the treatment for 2 and half weeks. Not much into crowds but looking forward to it.
This is probably not the high rise in PSA so will need ADT as well. Got a email to my medical oncologist for the best plan.
Not sure if she wants me on more lupron or what. Sure was hoping for a better outcome but will just flow with the punches.
Appears that most of the studies lean towards radiation and ADT in my case.
Not sure if anyone has any thoughts for me on this, if so that would be greatly appreciated. Any questions that you have I hope I can help to.
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Rising PSA after Prostatectomy
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