Clean PET/CT Scan - Why no treatment change?

[NorYug]

I was diagnosed Stage 4 in 2019 and have been getting Lupron shots and taking Erleada ever since. My PSA went down to undetectable within about six months and has stayed there. I have very mild side effects (other than the loss of libido). I had bone scans in 2019 and 2020. The 2020 scan showed significant improvement over the first (which resulted in the Stage 4 diagnosis).

My MO (who I like and trust) keeps telling me that we're going to stay the course until my PSA increases. (Why fix something that isn't broke?) I recently got a second opinion from a well-known, respected MO at a well-know, respected hospital who agreed with my primary MO.....however, he encouraged me to get a PET/CT Scan primarily to have a base line in anticipation of changes down the road. My primary MO supported his recommendation.

I emailed my primary MO for his comments on the PET/CT results. (They looked good to me, but I lack...by a lot...the medical expertise evidenced on this site by others.) He responded that the results were, in fact, very good, there was no evidence of the disease and I am in "complete remission". However, we're going to hold steady on the treatment....which is what he's been telling me for a couple years, but I was guessing/hoping that he might change his mind if the scan came back very favorably.

I am, of course, extremely grateful that his care has gotten me to where I am, but I have to admit that I was still hoping that this scan result might result in some sort of easing of my treatment. Yes, my side effects are mild, but they aren't non-existent. The SE's that bother me are loss of muscle mass, mild fatigue, mild cognitive fuzziness, and weight gain. (To be honest, I do wonder if these are more the result of normal aging, rather than my treatment. )

My simplistic logic is that maybe my SE's would ease (or go away) if we reduced my doses, or stopped treatment altogether. Isn't it possible that the SE's would decline and not rebound for a considerable length of time? And, if/when my PSA started to increase again, I could simply restart the original treatment? I also emailed my new, second-opinion MO, but he isn't know for responding to emails.

I will happily continue on the treatment plan that's working, but I can't shake the wondering that maybe that plan is overkill. Thanks in advance for any counsel.

[Tall_Allen]

What is keeping your prostate cancer in remission is your hormone therapy. If you take off the brakes, your cancer can grow unimpeded.

[FormulaRob in reply to Tall_Allen]

Hi Allen,

Just wondering why they don't keep us on ADT if this is the case. My father is also undetectable at the moment but they say just a few more years of ADT. They say after that will be the true test if this disease is in remission.

I guess because there is a chance of it being a true remission? or is ADT just too hard on the body for them to leave people on?

[Tall_Allen in reply to FormulaRob]

There is no time test for remission in PCa. It is an undefined term.

For your father and the OP, they are not recurrent after RP or RT prostate treatment. The only thing keeping the cancer from progressing is the hormone therapy. Mortality with intermittent ADT was 10% worse than with continuous ADT:

prostatecancer.news/2023/04...

[NorYug in reply to Tall_Allen]

Allen,

My oncologist will probably be happy to hear that your three-sentence reply (above) will probably get me to finally stop asking why we can't dial back my treatment. Maybe it's just me, but it seems counter-intuitive that I can be in "complete remission" with "no evidence of disease" and yet not be able to modify my treatment. The linked article provided the 10% statistic you referred to in language that I could (pretty much) understand....even though the conclusions cited in the article seem contrary to logic....I'm not gonna argue with what appears to be the science.

I'm very grateful that you were able to put this question to rest for me and for all you do here. I tried to subscribe to your blog but got an error message. (Maybe I'm already registered.)

Thanks again.

Ron

[Justfor_]

Lupron dosage can't be adjusted. You have to revert to Orgovyx to accomplish that. I am a big proponent of Minimal Effective Dosage but the average doc would not even listen.

[Ian99]

You don’t mention it but based on my experience I would push to have regular scans to check for radiographic progression. Your second MO was right to create a baseline.

[TEXAS_dan2022]

Having a PET / CT scan is a good idea ONLY if your MO thinks it is necessary and would be of value. My MO at UTSW has warned me that they only authorize a maximum of 3 scans pver an 18 month period and then only if medically necessary. Why? read this..

cancer.org/cancer/diagnosis...

[j-o-h-n]

To be honest.....just keep on keeping on............ (boy do I hate that expression but who am I anyway, just a handsome dude trying to make people happy)........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/15/2023 3:57 PM DST

[ron_bucher]

"Clean" scan just means the tumors are too small for them to be visible on the scan. It takes a while (months to years) for tumors to grow big enough for even the best available scanning technology to show them.

[RoseDoc]

You remind me of the hypertensive patient whose BP is well controlled on meds. He then decides that, since his BP is no longer high, to stop the meds. I then see him in my ER with a stroke and sky high BP. Your meds are working. I would be very reluctant to stop them unless the SE's are severe.

[Justfor_ in reply to RoseDoc]

Nice sophism! Your hypertensive patient didn't come to your ER because he stopped taking his meds. He did so because he was not monitoring his BP. Any smart person would take their BP, at least, every other day and adjust dosage accordingly, including stop taking for as long as it is within normal range.

[RoseDoc in reply to Justfor_]

You'd be surprised. My point being, one is in remission because of the drugs. I would not stop them unless you are monitored very closely.