Hi all, it has been a while since i've posted but have been following the posts pretty much daily. I hope all is going well. I am just posting on behalf of my father today. He did ask this PSA question to his team and they told him that this is the standard practice. So.. they may be right but I of course would like to check your thoughts here !
Radiation completed Mid February. His PSA at time of diagnosis was 226, jumped to 266. after a month of firmagon it dropped to 3 PSA. after radiation it dropped to 0.3 and now last month it dropped to 0.17. Gleason score 9, all 12 cores positive but conventional scans showed no spread other than close lymph nodes and questionable spot on pelvic bone.
They said they are aiming for a cure for him but said no more PSA tests until the 6 month mark post radiation (which is another 5 months away) .. at this time they will do the conventional scans again. Sounds like a bad idea.. should he not still continue monthly PSA tests? Or does it not make a difference ?
Separate Side Effects Question Below
My father was on a monthly firmagon injection but his team has now switched to him a shot that is only given once every six months now. It is supposed to be slower releasing. The side effects about 1 week into this new shot has been bringing some heavier side effects. I am wondering if the side effects will lessen as he gets another week or 2 in? I think it is eligard but he couldn't remember so just my assumption.
On Firmagon he still seems to be super smart and good reflexes. He came go karting with me and my friends (we're all late 20s) and he was only 2 seconds off from the quickest lap time ! That is a 65 year old coming off 5 week radiation treatment just 3 weeks earlier and continued ADP treatment lol.. I was worried it wasn't safe for him but he insisted and had a great time
but now a week into this elligard shot.. He went to Vaughan Mills Mall and was unable to complete 1 walking lap around it (One lap is about 1.49KM). His legs basically went numb I guess from exhaustion. Absolutely shocked me because a week before this shot he was able to shovel an entire 2 car driveway with 30CM high snow.
Anyways I know side effects differ from person to person but just trying to get an idea if this is somewhat expected and in other experiences if these symptoms sort of lessen a few weeks after the shot?
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FormulaRob
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PSA before 3 months is useless. Because of his cancerous lymph nodes, he should have 2 years of abiraterone and 3 years of Eligard (which is the current SOC). That will stop all cancer growth, so there is no point in having frequent PSA tests.
I can't think of any reason why Firmagon and Eligard should have markedly different mental effects. He can try Zoladex, but it is only available as a 12-week shot.
Thanks Allen. Okay we just had the fear of neglecting something that is important. 6 months seemed like a long time thinking about how quick things could progress. But with the ADT that is obviously working great at the moment, I guess there's no concern
Maybe it is just in his head.. I will let him go another few weeks and see how he feels. He took some time off from exercising and that maybe is the biggest factor of them all. Appreciate your time Allen have a great day !
You wrote that your father has had “conventional scans,” which I understand to be CT scans and MRIs. Has your father had a PMSA scan? After I was initially diagnosed with prostate cancer in 2021, I had an MRI which showed no spread but the PMSA/CT scan showed spread to several bones and lymph nodes. A subsequent “conventional” CT scan showed no spread. So, my “conventional” scans were not sensitive enough. If he hasn’t had a PMSA scan, maybe that should be done in addition to the “conventional” scans to confirm that there has been no spread beyond the close lymph nodes and pelvis? (Maybe PMSA scans are now considered to be “conventional,” and that is what you meant when you wrote he had “conventional scans,” in which case sorry for my not understanding that.) Best of luck to you and your father.
Unfortunately by conventional I meant just standard Bone Scan and CT scan. We pushed the team so hard for the PSMA/PET scan but here in Toronto Canada is not a standard practice quite yet. His team said not needed and would not refer him. It came down to either delaying the next steps here by going across the border to get a scan himself or just following his teams guidance. He chose his teams guidance because he already had a Firmagon shot a few weeks earlier and time was dwindling down before his PSA would drop under the 2 PSA limit.
His PSA now being 0.13 I believe it is too late for the PET scan to be sensitive to anything. I am happy that his conventional scans showed no spread anywhere .. and these scans were taken back in maybe June and then again in September .. so both times came back clear which is definitely nice to see although i'll admit there is a lingering fear in the back of my mind about the possibility that they just weren't sensitive enough.
Although I want to believe that these clear conventional scans still give us a lot of hope as they do say online they are still 80% accurate
I get my PSA checked every 6 weeks. I always want to know what it is doing so that I can plot a course of action. PSA testing is relatively inexpensive and I’m not sure why your doc would have you wait 6 months. Personally, I’d rather know than not know how it’s tracking. If it’s increasing I can discuss options with my doctor and not be blindsided because I waited so long.
Thanks Ed, that has been my belief as well and he may go about it himself to get PSA tests and track it it himself for the time being.. peace of mind right
I don’t see why your doc wouldn’t order it as often as you wish, insurance will cover it, it’s not unusual for someone with PCa to test PSA frequently.
Ed
I was told by my Radiation Oncologist, a Professor at Baylor College of Medicine, that it doesn’t make sense to check PSA before three months after IMRT as the mutant cells were still dying. This was in 2003.
If your docs and an TA say it's SOC and pointless until three months, patience is the best route, but if you just have to know what it is, both Labcor and Quest Diagnostics allow patients to self-order their own lab tests. Quest charges about $70 for it. Not all states allow this, though.
Ordering your own tests empowers you, but you risk added unnecessary anxiety if the numbers aren't where you want them to be...
Thanks GL, that is very true.. good perspective. From the info gathered so far on this forum.. it sounds like his team is doing the right thing. Which gives me some peace of mind on the situation. thank you
I did take Firmagon for a short time the first few weeks of building defenses to this horrible malady. However, at that time I ws so very confused about what was for my heart, my diabetes, or my cancer. Sorry and stilled confused about all the pills and injections I have.
It is my understanding that dying cells give off PSA which means that a PSA test within 3 months could be elevated. Would that give you "peace of mind"?
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