Just got my monthly PSA results back and it has gone up to 0.4 so its time to do something.
I have been on ADT vacation for over a year and a half - but my testosterone came back last July/August and at that time my PSA went up and seemed to be holding at 0.2 - but now its not.
I have been going to a urologist who isn't as progressive as I was expecting (e.g., was against taking zytiga w Lupron) so i want to go to Mayo here in Arizona but not sure how.
My urologist appointment is the end of the month - so i guess i could ask him - or can i contact Mayo myself.
I'm also open to any other options.
thanks
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PabloK
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Thanks PB - all things considered - that isn't too bad of an approach. I did find an online application for Mayo - and they said they would be calling w/in two days to set up an appointment.
Did you start ADT before your PSMA/PET scan? does that make a difference?
Thanks TA - great advice as always - I now know it is a matter of time as opposed to whether my PSA will increase or not - so I want to get established with Mayo before I get to that point ..and to be honest, i don't have a lot of faith in my current urologist.
I'm one of those who does not restart ADT until my PSA exceeds 2.0 and btw my PSADT is 10 weeks and am routinely (another story) oligometastatic. ADT has many side effects so don't be in a hurry. I restarted Zoladex (for the third time) in June and after 12 weeks my PSA had dropped from about 2.7 to 0.04 and am now on a second 12 week depot.
Ok... so I've got to ask?? How expensive was it to see Dr Kwon.
I tried to start with Mayo Phx at the beginning of 2022, check my Bio, and they wouldn't accept my insurance so I'm curious what it would be to use Mayo Phx out of pocket.
Granted it would not be quite the same as seeing Dr Kwon in Rochester. 😉
You could pay just for a consult with Kwon and then your local in network oncologist would likely follow his recommendations on treatment if they differ. I did something similiar with my intial treatment.
Honestly, I didnt have to pay a penny. I have Medicare and Plan F supplement from UnitedHealth Care. I do remember that the consult with Dr. Kwon after my tests and Choline PET scan was $437.00.
As has been said many times here, everyone's cancer may be different. With that caveat, it's possible my cancer is less aggressive than yours. My MO did not start ADT until recurrent PSA was 5.70. Started vacation May 2021, which continues. In phone conversation with NIH, the MO said to ignore PSADT until PSA >0.50. Being followed/treated at Duke. At my inquiry, MO there said probably would not re-start ADT until PSA got back to 5.0. Said doubling time would be the most significant variable to monitor.
Hello Pablok, the Mayo Clinic in AZ is a nice hospital. My MO is Dr. Bryce. I have always felt he was a little more conservative in my situation with recurrent cancer with only Eligard for ADT, after i recently finished SRT in Aug he said we will just let my 16 months of ADT which will end in October stop. I also saw Dr. Singh there and he seemed more aggressive suggesting Zytiga with my original Eligard. You can always switch doctors. Dr. Bryce has some videos on YouTube. I like Mayo in gerneral. Good luck.
I managed a four year vacation from Lupron (2016-2020) during which my PSA rose to 35. I returned to Lupron and PSA is now down to <0.1 for past two years. I wouldn't advise doing that. But what I did does show that some less aggressive PC can be controlled with Lupron after long vacations. I was experimenting with natural remedies. I didn't have much success. I did lower PSA without Lupron a couple of times in four years, but my attempts were generally unsuccessful.
thanks - i found Mayo's online tool that i filled out yesterday and Mayo has called back and i'm in the process of setting up my first appointment - to be honest, i was a bit freaked out when i got my results back yesterday and saw that my PSA had doubled in 2 months - and my urologist doesn't have my confidence ( he wanted to monitor my psa twice per year - until I beg him for monthly) so I wanted to go full speed ahead to Mayo.
thanks again for your support - and i really love this forum - some of the best people in the world
i"m not at 2.0 yet - i was at 0.2 in July and 0.4 in Sept so i'm more concerned about my doubling rate - and i wanted to get established with Mayo so that when the time comes, i'm not scrambling.
I was on ADT from November 2018 until January 2021 - Lupron the whole time and I added Zytiga starting in April 2019 until January 2021 - and i was ND the entire time and up until December 2021-
I suspect your urologist is going to suggest continuing to monitor your PSA.
What you've described as your PSA readings seem typical of a PSA "Bounce" after radiation/ADT treatments are complete. The bounce can happen anytime after about 6 months, out to several years after treatment is complete, and the numbers you're showing are right in the range of bounce numbers. Google "PSA Bounce after radiation" - Google that exact phrase, you'll find a very interesting Google summary on it.
If you don't have a medical oncologist on your team it might be worth finding one. They would have been the one to prescribe Zytiga with your Lupron. My MO is considered one of the best in the field (he primarily does research and runs studies, but keeps a few patients to keep his hand in treatments) and I'd asked about Zytiga back when I finished radiation. He suggested we hold off on it, and do it if it's needed (which it hasn't been.)
You might also talk to your radiation oncologist (the guy who zapped you) - I have to assume he knows about PSA bounce and might explain to you why your current number isn't a huge concern.
You're doing monthly PSA reads? Any reason (I'm not arguing against that, I'm just curious) for that?
Are all the PSA reads from the same lab? If the same lab - was the same machine used to run the tests? If same machine - did the same tech run the tests?
The reason I ask this is I know that these results can be in error. By an odd circumstance, I had two PSA tests run on blood samples taken seconds apart, run on the same machine, by the same tech and reviewed by the same MD at a large nationwide lab chain. The results were significantly different. If the tests were done by a different lab, or a different machine, by a different tech - the chances for errors creeping in are simply compounded.
If your PSA was now measuring 2.0 vs last read of 0.2 - I would suggest being concerned. The difference you mentioned (despite it seemingly being a "doubling") would for me trigger asking that the PSA be done again. If the number continued an upward trend I'd be concerned, but in my experience, chances are the next read may well indicate a decreasing PSA.
One other thing - if you've recently stopped using finasteride (for BPH) - you can expect a doubling of PSA as the finasteride wears off. I had that happen.
Second other thing - do you have testosterone numbers for each PSA read? If not (and my urologist never asked for this, my MO does) - you should. It's entirely normal for men who had radiation treatment to show an increase in PSA that corresponds to an increase in "T".. we still have a prostate, some healthy cells survive radiation, so we still have PSA and PSA is responsive to T.
Hope that was helpful and hope it wasn't too long and rambling, but I've BTDT and learned to stop worrying... 😀
I'm doing monthly-ish PSA and supposedly testosterone - but for some reason i'm only getting the results about every other month - and it is consistently around 250. And (as you stated) my PSA started to rise after my testosterone came back (the empirical evidence for my T returning was that all of a sudden, i started noticing women again...after a two year drought)
After i saw my PSA go from ND to 0.1, i asked this forum and someone else said that their doctor was doing monthly to be able to track doubling time - so i got my Uro to write the order for monthly (he was going to be happy with semi annual tests).
Since i have been doing monthly tests, the trend is fairly clear - it has continued to climb. It held at 0.2 for several months - but now it went up to 0.4 in two months (i was traveling in August so i didn't get a test for that month). I haven't seen any decreases.
Also - I follow Dr Sholz on youtube and he supports earlier intervention with PSMA/PET and radiation for a potential cure - so I would rather be too early than too late.
As I mentioned - BTDT. My PSA was ND when Lupron was performing it's magic evilness.. and I was also on Finasteride for pee problems. I came off Lupron, and instead of >0.1 readings I got 0.1 readings, alternating with >0.1, so all is good I figured. I finally came off Finasteride and the next PSA was 0.17, followed by one at 0.17 or 0.23 (that was the double-read one), and then 0.21, and a 0.20, finally 0.22. As you can see - a pattern where the PSA doubled basically when I stopped Finasteride, then bouncing around centered around 0.21.
My next one is in about 2 weeks.
In talking to my rad-onc and med-onc, both are not concerned at all, and feel it's an excellent number for the treatment I had (and my G10 diagnosis). So - I'm staying at 3 month reads and trying to stay mellow. My med-onc did mention PMSA-PET scan if he did get concerned, but at this point - he said he isn't at all concerned with my numbers.
Certainly if you can get the PSMA/PET scan prescribed and covered by insurance, except for the additional radiation - there isn't any harm in having it done. My med-onc did say I was right at the edge of PSA where something could be detected IF there was anything to be detected, so it would only be valid as a positive result. Negative would be inconclusive (could be nothing there, or could be nothing found and there is something there..)
Good luck with whatever you decide.. (and I'm on my 2nd urologist, and I'm not altogether happy with him either, but I have a really great one in reserve and I think I'll be switching over to him.. even though he is in NYC which isn't fun to get to.)
Mayo called back and they are going to set me up with their Uro - they said that they wait until you hit 2.0 to refer you to their onocology staff.
I will be asking the Uro about PSMA/PET - my understanding is that medicare will pay for an annual scan - and more if it is part of an active diagnosis.
thanks again for your and everyone else's support -
Nine months on first break, six on the next. Break starts when PSA 2 which is also the start point for the next ADT cycle. Have had three rounds of SBRT but the effect is consistently short term, so much so the RO suspected a targeting issue the first time.
I’m a little confused. Did you never have any signs of metastatic progression? Or did you have such indications which prompted ADT and the ADT reduced the burden?
Thank you. I find all of this rather confusing so don’t blame yourself. Eg…I don’t understand why we treat a cancer that does not appear to reside anywhere in the body…why not wait until one can find it? There is probably a good reason for this but I am just not seeing it. How does a cancer kill you that can’t be found residing anywhere? Is the expectation that one day it will rear it’s head with a vengeance and take you all at once?? Truly wondering.
tanya Dorf md at city of hope in LA recommended Alam Bryce to me for medical oncology with specialty in prostate cancer when i saw her on Tuesday. I too sm on Az Pablo
Do your online research of Mayo physicians that specialize in prostate cancer to find the most expert and contact their office. Ultimately, they may refer you to an oncologist with this expertise, related to their field. You can also get a referral from your primary care physician, once you know who you want to see...just ask and they should refer you.
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