PC spread to some lymph nodes; radiation, ADT. intermittent ADT

@gkgdawg FYI-was on ADT 28 months, off ADT-21 months now. PSA<.02 still, testosterone up to 99 now. I m still functional as I visit the ANYTIME FITNESS joint 3x/week.

As I have said in the past, time to throw the BS penalty flag...

After surgery, BCR, SRT failure, I had a Director of a NCCN Urology Department say he would put me on continuous ADT...

I fired him...

I did triplet therapy, six cycles of taxotere, 18 months of systemic therapy (Lupron) and whole pelvic lymph node radiation.

That brought a five year break.

When I'm recurred in April 2024 we reached a decision point and did 12 months of systemic therapy, Orgovyx, coupled with SBRT to the lone pelvic lymph node identified in the PSMA scan.

In both cases, we had clearly defined clinical criteria for de-intensification, PSA undetectable in the first 3-6 months and stayed there. We did have criteria that if it didn't, we would add an ARI and, or extend the ADT to 24-36 months.

When de-intensifying, we had a plan to actively monitor while off treatment, frequency and type of labs, consults, what PSA would constitute sufficient reason to image...

I'm high risk, GS 8, GG 4, rapid PSA doubling and velocity times so my triplet and double therapy are inconsistent with the guidelines and clinical trials.

In both cases, T recovered to 400+ in around six months.

In both cases, it was my decision, supported by my medical team, with clear de-intensification criteria, an agreed surveillance plan once de-intensifying and clinical criteria about what would constitute a decision to resume treatment.

The latter is not a decision about what that treatment is, just what constitutes a discussion of what it should be. Too much changes while on treatment breaks and the answer is a function of the Sofia clinical data at the time.

So, either his current medical team opens up their minds or, find some that do.

Finally, caution on guidelines and clinical trials. They are based on valid scientific data...but, they are statistically based which may not fit your particular age, clinical data and preferences.

Square peg, round hole...

Yes, the NCCN and AUA guidelines are science based. It is exactly that rigid which may make them dated in light on ongoing medical research and population based.

Kevin

@gkgdawg FYI-was on ADT 28 months, off ADT-21 months now. PSA<.02 still, testosterone up to 99 now. I m still functional as I visit the ANYTIME FITNESS joint 3x/week.

Another thing occurred to me.

You probably have never had a decipher test for him.

That test would tell how aggressive his cancer is and whether he needs to stay on ADT for an extended period.

If no aggressive issues are Obvious, that Decipher test Can make sense, If there are aggressive issues already then doing the test may not make sense.

@jeffmarc I have not heard of a decipher test. Is it standard procedure? Sometimes I fear that we are behind, in Canada.

Intermittent ADT may not be what you really want. When you stop ADT, it takes 6 to 9 months to get back to some testosterone level. It can take many more months to get to a normal level.

There has to be some reason that the oncologist feels this case is so aggressive he can’t get off ADT..

Unfortunately, you don’t mention His Gleason score, Or whether he had any other things found in the biopsy.

Were any of these things found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

Were hereditary genetic test done to see if there’s a genetic issue? What was the result?

I’ve been on ADT for nine years, I’m on it because I have BRCA2 and stopping drugs can cause of my PSA to start rising quickly. I just wonder if something in your husband’s cancer diagnosis causes a similar need.

If he has no aggressive issues, then stopping drugs is a good idea after no more than a couple of years. And then testing to see if the cancer comes back. So your desire makes sense.

If none of the questions I’m asking, bring up aggressive issues then you need to go back to the oncologist and ask specifically, why they feel the ADT cannot be stopped. I know with my oncologist. I can ask just about anything and she can answer with quite useful information. You have to be proactive with doctors and make sure you are working toward your own best interest.

@gkgdawg
It is fairly standard in the US after the prostate biopsy if it contains Gleason 7 or above cancer. It is very expensive but most insurance will cover it since it is an important factor in determining treatment protocol for aggressiveness and possible future spread of the cancer. I really don’t know how long prostate biopsy tissue is stored by hospitals or pathology centers, but would imagine with the sheer volume their is a certain period. Also don’t know whether actual genomic testing of it requires to be done within a certain time period of viable tissue versus biopsy slides being read for second opinions.

@wheel1

Thank you very much for that explanation. And your point about how long biopsy results are kept or are viable is something to consider, as well.

Warm regards

Glenda