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 40%). Ralp surgery robotic was performed january 2023. Dad recovered well and first psa check 8 weeks later in march 2023 was untectable below 0,1. 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. 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. Dr 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.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 0,1. 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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So sorry to hear this news. It’s been 8 hours since you posted with no response.
There are two groups on this forum for prostate cancer this one and “advanced prostate cancer”
I would suggest to post this on the advanced prostate cancer group. It is the best for getting SOC (Standard Of Care) advice from very experienced warriors on new warriors just starting out on this journey.
TA and many others will give you the straight skinny on your best options.
You are welcomed on this group as we are a mix of warriors that kinda have our beast under control and are also using SOC along with non SOC and are generally not as advanced in our disease as our fellow warriors on APC group.
Just be advised you have time as PCa is a slow grower. Get an oncologist immediately in a center of excellence.
It is extremely stressful when you are diagnosed, and the possibility of a BCR is frightening for everyone. Take a breath and try to relax.
There is the possibility that some noncancerous prostate tissue was left behind after surgery, which could produce PSA. His PSA has stayed in the same range essentially after 3 testings,, so he does not have a PSA doubling time even.
If his PSA climbs to above 0.5, I would get a Pylarify scan then to see what it shows. Localized disease can be treated with radiation plus ADT and an ARPI ( androgen receptor pathway inhibitor) drug done usually for around 2 years. Good chance of cure.
If it has spread beyond the pelvic area, he would likely be oligometastatic,( < 5 tumors) and could be treated with SBRT( a special type of radiation) plus ADT and ARPI for a similar time period. An amigo had this treatment about 6 years ago and he has not had a BCR yet... we hope he is cured..
So..... relax... things like meditation or mindfulness will be helpful. In the last 5 years, we have seen a number of new drugs for PCA come to market, with more on the way..
You got time with Daddy. Enjoy. Sorry I didn't respond before, but I am vacationing in Spain and Portugal, and just received my lost luggage.
Thank you so much for kind words and helpful thoughts. 🙏 Yes much need to start meditating and calming my mind and the familys aswell. When you google alot there is so much that seem scary but happy to found this forum. Thanks again!
Avoid information overload...Initial BCR can be so scary... and there is an initial reaction to learn as much as possible as quickly as possible in hopes of survival.
Here's a funny story on me... When I had my initial BCR, I had a dinner on my birthday for close friends and family, because the American Cancer Society put out statistics that said I had a 20% chance of living 5 years. I refer to it as the sinners version of the Last Supper...
Little did I know that they don't update survival statistics for 5 years. I just look back...laugh...and enjoy life...
Exercise is important... but don't deny Dad the little pleasures... Like Prince, I wanna party like it's 1999... and I do...
It's the way the Americans make money. The Germans that invented the first PSMA radiopharmaceutical did not draft a patent on it. This was a problem for the pharma industry as any institution with a cyclotron could make their own without paying any royalties. So, many set out to invent (and patent of course) some "different" radio ligand. Pylarify is the commercial name of one of these. There are other as well. Every new entrant is claimed better than its predecessors. Marketing tricks...
Pylarify is the scan that I used to find the tumor for treatment when I had my second BCR post treatment. It is the Piflufolastat F-18 scan , an improved scan that was approved about 2 years ago. It's accuracy improves significantly above a PSA of 0.5. Just put Pylarify into any search engine. For reference, when I was diagnosed as having my first BCR, the axumin scan was the best and it's accuracy was at a PSA level of above 2.0. That was about 5 years ago...
That was why I said if his PSA gets above 0.5, then look into ordering the scan, but for now...breathe...relax...
I had the Rp surgery Jan 2022 n had a psa of 7 n then 12, then did radiation ☢️ n 7 months of adt n could only get psa to .5 until I started taking ivermectin w it then it dropped to.1, got off the adt and psa has stabilized at 1.5 for seven months now and my oncologist is real happy as normally psa would jump to 6 post treatment. So your three readings are actually very good n there’s so much coming out in the next cpl years that I wouldn’t worry too much… good luck n possibly look deep into how ivermectin is being repurposed as a potential anti cancer ♋️ (pca) treatment, it’s worked for my adv Pca thus far…😊😎
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