I have not posted for a long time but I am following your posts out there and I thank you all who are posting with your encouragement. It really does keep me enlightened.
I thought I would take the opportunity of my recent fluctuation in PSA and discussion on how often to have a scan to highlight my own journey. My oncologist is reluctant to have more than 1 PSMA PET scan in a 12 month period due to concern of radiation causing secondary cancer.
30/07/2018-PSA 0.16
21/06/2018-PSA 0.18
26/04/2018-PSA 0.11
13/02/2018-PSA 0.20
09/01/2018-PSA 0.71
24/11/2017-PSA 0.24
06/11/2017-PSMA PET Scan - Clear
26/10/2016-PSA 0.24
25/10/2017-PSA 0.23
25/07/2017-PSA <0.03
22/07/2017-Radiotherapy
30/11/2016-PSMA PET Scan - Clear
21/06/2016-Robotic Prostatectomy
This post is an opportunity for me to share.
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soffers
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Yes the readings were not only worrisome but also a surprise and I went back on the Bicalutamide after the 0.71 reading. Unfortunately no specific reason was given. Theories include biopsy released cancer cells to the outside of the capsule(?), cells producing PSA naturally(?), sometimes takes months for the PSA to settle down after radiotherapy(?) and PSA readings fluctuating at low levels(?)...in other words, we are not sure.
Its difficult to interpret the PSA history without knowing a bit more info. Some questions I have are: When and for how long were you taking ADT, what drugs did you take, and what was your highest PSA after surgery and before radiotherapy?
I know that PSA can vary quite a bit in patients who have had primary radiotherapy, i.e., radiation given as the first treatment. I don't know if that's true after salvage radiation. Perhaps someone else knows more.
I have read that, while PET scans are much more accurate than earlier technologies like bone scans, they still have a limit of sensitivity. I'm not sure that they can reliably detect cancer in patients with PSA below 2.0, much less 1.0. So I think your doctor is right to say that additional PET scans in the absence of a significant PSA rise will do more harm than good.
Post surgery (June 2016) the PSA crept up to 0.15 by late February 2017. I then started on the bicalutamide (March) and had radiotherapy through May/June 2017.
Initial bicalutomide therapy concluded 8th September 2017. After completing radiotherapy and bicalutomide PSA was <0.03, however by end of October PSA was up to 0.24 hence the PSMA PET scan in November 2017.
So initially I took ADT for 6months to September 2017 and then started again in January 2018 after PSA went up to 0.71 (highest PSA post-surgery).
Highest PSA post-surgery and before radiotherapy was 0.15. No other drugs.
I presume that your doctor has concluded that the radiotherapy did not cure your cancer. Otherwise I might have expected him to hold off on the bicalutamide in order to be more certain that the PSA would not go down on its own.
I'm not an expert, but in my inexpert opinion, it is time to talk to the doc about combination therapy - ADT, possibly a stronger version that includes one of the LHRH agonists (Lupron, Eligard, Zoladex, Trelstar, etc.) or the even stronger Firmagon, plus either Zytiga or docetaxel.
It seems to me to be useful to have a plan now for managing the cancer since the recent studies (CHAARTED, STAMPEDE, LATITUDE) all show that there is significant life extension if combination therapies are used early in treatment. I'm not saying that the combination therapy should be started immediately, only that it's time to think about whether and when it should be started in the future. Is there some time limit or PSA threshold that should trigger combination therapy. The studies indicate that, once the cancer becomes castration resistant, the chemo and Zytiga are less effective than if applied while it is still castration resistant. However, that's not the whole story. The aggressiveness of the cancer is also a factor and combination therapy may not be the best thing if the cancer is not very aggressive. I have known men who have lived more than 20 years without any symptoms on ADT alone.
Thank you Alan. I shall be bringing this up at my next consultation in November. My prayer now is that the next PSA test result coming up in November will also be downwards.
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