A couple of weeks ago I sought opinions on whether to move ahead with Lupron and radiation to prostate bed and lymph nodes based on my status at the time:
I was Dx'd July of '18 with a Gleason of 7 (3+4), bilateral with perineural invasion. No extraprostatic invasion. Stage 2a. My prostatectomy was in November. The pathology on my prostate said it was negative to cancer in the lymph nodes and margins and expected a clean psa. In January, my PSA was 0.06, in Feb it was 0.09. I have another psa at the end of this week.
My 3rd psa was again (0.09), each one a month apart from the prior. I am now wondering if this changes the urgency and/or treatment plan. My urologist who did my surgery has a great rep but difficult to communicate with him and get Q’s answered. I am now scheduled to see a MO which will push my treatment by a month.
Any opinions on the urgency of continuing to do ADT and radiation?
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JavaMan
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Just to pipe up with an unlearned opinion, my inclination would be to pigeonhole every aspect of my status until the MO reveals his prognosis/opinion and concentrate on nutrition/physical conditioning/immune system in the interim. Those numbers would be cause for celebration to me, personally. I'd ignore the crab bastard during the interim and catch up on chores. That's me, though...
See a MO and RO. Research. Ask questions. You don't understand something tell them to clarify. Take notes. There is a link in this forum that has questions. Find it and use it as a guide if needed. Figure out where this is coming from?!!
I was Gleason 8, Stage 3, PSA 12 before surgery. DaVinci RP June 2016. After RP PSA was .024. Three months (September) later .042. October 2016 had 38 sessions of radiation. January 2017 AFTER radiation PSA was .080. Called "Persistent PSA". My "Doubling time" was every 3 to 4 months. Guys say "I wish I had that PSA". A big or small PSA number isn't acceptable...you don't want any PSA. Ask how to get it to ZERO.
My story now. By mid 2018 (2 years after RP) my PSA was 1.35. My MO is concerned that after 3 body and 2 CT scans he can't locate anything. What's the driver of my PSA? I live close to UCSF so he reaches out to a former classmate and colleague there. His specialty is PC and research. By October of 2018 my PSA is 1.99 and I have a clinal trial scan the GA68-PSMA at UCSF. The results with a LOW PSA is metastasis to my lungs. Biggest nodule being 10 mm and multiple (more then 10) scattered in both lungs. Pretty unique JUST there. Now fighting the battle to keep it held back for awhile.
You have to get control of this now. Ask your oncologist's how. Best to you!
You should not be talking to a Uro or an MO - they do not have experience dealing with this sort of thing. You should be talking to a radiation oncologist.
Because your pathology was good, it is the uPSA pattern you should be looking at. PSA at these low levels may fluctuate because sometimes the cancer is active and sometimes it is not. Some researchers found that when PSA is above 0.03, the pattern of two consecutive increases in PSA or an increase of 0.05 per year indicates that it will continue to stay active and increase. You can also request a Decipher test of your pathology tissue to see how aggressive it is.
Thanks TallAllen! I have met with an RO as well and have his opinion prior to my last psa remaining the same. I am seeing the MO hoping for someone with a broader view than a specialty for other opinions. My concern is an RO leads with radiation as a surgeon leads with surgery, similar to any other industry.
MOs don't have a "broader view," they have their own specialty, which is treating incurable cases. Why ask the opinion of someone who is not in the business of providing cures? You will just hear his opinion based on a lot less experience with this sort of thing than an RO. There is no one with an objective POV.
You are perfectly capable of making the decision for yourself. You can look at the same data. In fact, only you are capable of making this decision.
I think the key thing for you to keep in mind is that you have a window of around 0.1 to maybe 0.2 in which to act on salvage radiotherapy +/- ADT ... so keep having monthly PSAs, taken at the same lab to minimise measurement error, plot the natural log of each measurement vs. time, in months, and the slope of the line, divided into the natural log of two, is your PSADT... keep an eye on the absolute PSA and the PSADT, and that will give you a good handle on how quickly you need to act.
I used a research medical oncologist who specialized in prostate cancer. Before he took ill, he was doing a trial on Adjuvant Chemotherapy after Primary Treatment for Pristate Cancer. There have been a number of trials since on this. If your disease is going systemic based on a rising PSA and not detection of Mets through scans, you might look into this. There are results that indicate an increased survival rate.
I did not. I have had one psa test since my radiation and lupron supposedly being out of my body. It was undetectable and am hoping for the same in my test in March.
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