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Just got latest blood test

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Posted 12/13/2019 11:28 AM (GMT 0)
I now have a decision to make... Should I get a pet scan or not...Meeting with MO in three weeks. Then do I go on ADT.
If pet scan shows nothing do I wait or go forward. Any advice????
Posted 12/13/2019 12:27 PM (GMT 0)
They wouldn't give me an axumin PET scan until my PSA had hit 3 ng/dL. The cancer has to be big enough to show up or the scan is useless.
Posted 12/13/2019 3:42 PM (GMT 0)
At your PSA level, scans aren't likely to show anything. At this point delaying ADT for a higher PSA wouldn't hurt and you'd get a better chance of a scan showing where it is.

but it's really your choice.
Posted 12/13/2019 4:24 PM (GMT 0)
I understand about the pet scan.... with my doubling time should I wait or start ADT... It drives me crazy just trying to make the right decision
Posted 12/13/2019 5:15 PM (GMT 0)
I was recently in your situation a few months ago. My DT was six months. My PSA was rising steadily about 0.1 every month, but a very low value. When it got to 1.0 I opted for an Axumin PET scan and my insurance approved it with my MOs justification. It showed two Mets. There are guys whose PCa doesn’t produce much PSA so if you are one of those unlucky guys, as I am, PSA is not a reliable indicator of advanced PCa. Several factors should be considered and DT is definitely one of them. I had been dreading starting ADT and put it off as long as possible. Following the Axumin, my MO said it was time and he didn’t recommend putting it off any further than I had. I also opted to combine ADT with Zytiga due to the results of the Stampede and Latitude studies and the potential benefit of doing both together as opposed to ADT alone. I have only been on ADT for about a month and my PSA is now 0.1. I had a little hiccup with a kidney issue and stopped the Zytiga for a week but am back on it starting today. So far, and knocking on wood, the ADT side effects and Zytiga/Pred. Side effects have been so minimal I almost feel stupid having had so much angst about it. Maybe I’m just getting lucky, maybe more time will result in more side effects, but for today it appears my anxiety about it far outweighed the actual side effects I have had so far. A little flushing from time to time but nothing major so far. I wish you the best in your decision making and coming from what happened to me, I’d opt for the Axumin or PSMA if you can get it. It wasn’t a waste in my case, and signaled the need to start treatment. It may possibly have bought me some precious time in the long run. At least that’s my hope for myself and my hope for all the guys out there who are navigating these turbulent waters. My 2 cents...
...Bob
Posted 12/13/2019 6:31 PM (GMT 0)
The rising PSA signals the need to start some treatment, right? I wouldn't want to wait to see a scan to show where my mets are located. I'd want to start treating asap. You will most likely be able to have intermittent treatment. Maybe a lupron shot and zytiga for a year and then go on a vacation-see what happens. See what your MO says and maybe get a 2nd consult via phone with a Mayo or MDA.
Posted 12/13/2019 8:47 PM (GMT 0)
Since I already had IMRT 39 treatments what would the point in having a pet scan? If it shows something can they do radiation again? or should I just go on ADT
Posted 12/13/2019 10:47 PM (GMT 0)
If you are close to someplace that does psma imaging, and you want to know where the little bugger is growing, they have had success detecting pca with psa’s as low as 0.5.
Posted 12/14/2019 3:58 AM (GMT 0)
Sometimes it's possible to do spot radiation on distant mets (not in the prostate bed). Generally done to reduce bone pain. It can be done even after you IMRT.

ADT is your next likely next treatment option. The question is when to start that. A good conversation to have with the doc.
Andrew
Posted 12/14/2019 4:09 PM (GMT 0)
A few years ago when I first heard about the Choline PET scan at Mayo I thought that offered a promising alternative to systemic treatment. I no longer think it is. As Andrew suggested sensitive scans could be useful for identifying and spot-treating mets. But other than for that, I see it as playing whack-a-mole. Any mets the scans can see are just the most visible part of a systemic problem that needs systemic ADT.

As for when to start ADT, the good news is that you may still be a long way from needing to start. Of course you need to trust the judgment of a good MO who specializes in genito-urinary cancer, who will probably recommend when to start based on your PSA number, the rate of increase, and his/her years of experience.

I moved my care to an MO at Dana-Farber in 2016 when my PSA returned a few years after salvage radiation. He wasn't in any hurry to start treatment when my PSA was still only in decimals. When it moved into whole numbers he suggested we could wait until it was much higher, though how much higher depended on both the PSA number and the rate of increase. My doubling time started shortening at an increasing rate in late 2017 and I started ADT in May 2018 with a PSA of 6.6.
Posted 12/14/2019 5:53 PM (GMT 0)
Bohemond is quite correct. It now most probably becomes management of a chronic condition.

Since radiation only seemed to halt the PSA rise temporarily, it would appear PCa is somewhere else other than the local area treated but could still be in the area adjacent to the prostate beyond the treated area.

Your MO may want your PSA to rise to the point where a PET scan would be productive and also watch the doubling time over a few more tests given some variability in past results. This would not change going on ADT at some point but you might get some clarity as to where the PCa is or heading. Always possible that there is something to treat directly that might improve situation. Hopefully the MO has a good plan for you when you meet.
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