My score

[Erwaco]

What treatment did jim get? I hv a Gleason 9, a PSA around 5.5, rectal exam clear no other symptoms, good weight good physical condition no other conditions no medication‘s. My doctor wants to start a hormone therapy and then radiation. I sent my pathology report for a second review to John Hopkins in Baltimore.

[Tall_Allen]

prostatecancer.news/2018/03...

[maley2711 in reply to Tall_Allen]

Allen - Thanks again for putting together such comprehensive reports....this one reinforces the confusion one can feel when reviewing studies based just on Google searches. Did any of the studies provide additional long-term QOL surveys among patients?

Also, was there available info on salvage treatments following radiation therapy?

At almost 73, any treatment decision looks like a dive into the deep waters? Looking at that MSK nomogram for life expectancy for similar men my age who chose no treatment, Pca mortality at 10 years 20%, overall mortality 50%. With RP at MSK, 10 yr CSS 99%, and 10 yr PFS 29%. In light of your reported findings, do they jive with those MSK numbers?

Can I directly compare 99% CSS at 10 years for treatment versus 20% PCa mortlaity at the same 10 years if no treatment> or would I be wise to consider other factors. I assume 99% CSS means cancer mortality of just 1% at 10 years.....a clear advantage for treatment, but I assume NOT meaning that OS increases from 50% to 69%?

My bone scan was negative ..cept the radiologist was not ceertain as to what she was seeing mid-lumbar area...leaning toward degenerative damage(old man syndrome!) but reporting as indeterminate..hopefully resolved by other tests??? My ALP is 50, and PSA steady at 7.5 for 32 months .

Unless today's CT show sdefinitive metastasis, in mid lumbar or other sites, next step a 2nd opinion from JH? Or enuf to see if Kaiser pathologist agrees with OHSU biopsy pathologist..trained at JH. Or $4000 total for travel to and Ga PSMA PET at UCSF? I see someone in seattle now listed as PYL availability.....probably similar $$$?

Meanwhile, based on my experience, advise younger uncircumsized men to have circumcision sooner rather than later. My phimosis of the past 3-4 years is becoming more concerning, with pain symptoms and tissue deterioration, and I think facing unattractive option of circumcision at an unfavorable age....full GA required maybe. But, not mad at my parents!! My sister asked!

[maley2711]

there are other factors that may affect your course of action, and we assume your Doc is considering all those factors. I'm in pretty much the same situation, with just the tiniest bit (1 mm) of significan tcancer found in a 12 core biopsy plus 6 targeted cores to a large area of concern. Has your PSA been on a steady climb, or stable for x months? For instance, mine has been steady 7.5, with one dip to 6.5, over 32 months!! Maybe I am wrongly hopeful, but seems that stability may well indicate my 4+5 has not yet gone ballistic. and hopefully same with yours!!

Allen has provided an excellent report on comparative studies. Also look at NCCN, EAU, and AUA guidelines. It is not all about longevity.....you will want to undertand risks of serious side effects for each treatment. Unfortunately, no treatment has near zero probability of worrisome side effects...and the more treatments in a protocol, the worse the probability. For instance, in Allen's report, note the % of RP patients who also had salvation radiation...exposing yourself to side effectss of both RP and radiation. But, brachy boost with ADT has the same problem.....maybe worse, maybe not. Wish studiesAllen reported had more dat on long-term quality of life? If a treatment brings one year of additional life , but 5 years of worse QOL, what is your decision? I don't know if it is possible to quantify to this extent...for an individual, there is no guarantee of that extra year of life, nor that you will have an additional 5yrs of better QOL with an alternative treatment plan.

[Cooolone]

Morbidity and Mortality are two separate and distinct endpoints in regard to therapy results. Typically mutually exclusive... And with any treatment comes side effects, bar none. So what do we do...?

For advanced patients who will suffer these therapies shown in the retrospective studies, QOL data could be pulled from them as well, although that was not the intent. Maybe contact those who performed the study and see if there is a subset of data? We are aware that the heterogeneous nature of PCa, prescribes that not all patients will experience the same side effects, as so much can factor into the equation then. General health, age, co-morbitities, etc., can all lend weight to the experience. It's unfortunate as there is no chiseled-in-stone reference that will assure the lack of or severity of side effects for a given treatment. Like most things with this disease, we educate ourselves to make the best choice possible for us, and making the choice is what's important. There is no choice, to not make a choice!

O.o

TA, thanks for posting, it (post) educated me to some numbers I was unaware (BBT).

[Tony666]

I had a very similar situation. Gleason 9, psa of 7.3, no evidence it was outside prostate on Dre or bone/CT scan. A little younger though at 61. did a lot of research between RP and EBRT+Brachytherapy+ADT (the two standards of care as per tall Allen’s note) and consulted several onchologists including at John Hopkins. And I chose…..

door number 3 - a trial at NIH with 6 months intensive ADT (ADT+3) followed by RP. My thinking was as follows: Gleason 9 means it’s likely out of the barn even if it doesn’t show up on the scan so I needed a systemic treatment that would help kill micro cancer. But so much radiation from EBRT and brachytherapy scared me as did 2 years of ADT. You might cure the cancer but hurt your body more. The NIH trial gave me both systemic treatment ( but of shorter duration) and getting rid of the motherload.

So far, one year out, very happy with the results. After the RP no cancer found in the prostate or lymph nodes. And fully recovered from adt with testosterone back. Now not everyone does as well (complete response like mine is about 20%) so it’s a gamble. But you are checked half way through (at 3 months) w biopsy and PET scan to see how it’s working. If it wasn’t, I was planning to opt back to EBRT + brachytherapy

I think success factors for this trial include how healthy you are (RP is major surgery) and how much of your prostate had cancer (though I had Gleason 9 it was only in about 5% of my prostate).

[Hidden in reply to Tony666]

so you just did 6 months ADT?

[Tony666]

The protocol was Six months intensive adt +3 (enzelutimide, abiraterone, prednisone, goserelin) followed by robotic prostatectomy. I think just using Regular adt isn’t strong enough to kill the micro cancers (I gather just using regular adt for 3-6 months before RP was tried and failed in the 1990s). I should add that I felt the doctors, nurses and surgeons at NIH were first rate and totally free since it was a trial. But do your own homework and talk to different onchologists before deciding. Every option has its risks and uncertainties. This is one option but it is still a trial and not a regular standard of care.

[tallguy2]

At age 56 I had much the same start. With Gleason 9 disease it is imperative that you take action beyond ADT! See Tall_Allen’s link.