My husband was diagnosed as de novo metastatic PCa to lymph nodes and bones in late April. He is Gleason 8 and 56 years old. One month of firmagon starting then followed by lupron. Started taxotere in June.
My husband completed taxotere 1 and 1/2 weeks ago. Had scans yesterday. Shrinkage of bone and lymph Mets and prostate gland. Psa down to 1.4. Results are supposed to be good. The doctor is suggesting he participate in a trial where he is either control arm that continues on lupron or gets prostectomy.
I know some have done this. Appreciate thoughts and experiences. Trying to decide whether it is worth it or not.
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longleaf
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Prostatectomy is one of those partisan issues where you should be aware of bias.
Men who go to oncologists first are less likely to opt for surgery & more likely to have a negative view of prostatectomy.
On the other hand, men who opted for prostatectomy are more inclined to a positive view.
Some are inclined to the view that it is always a good idea to eliminate the "mother ship". Particularly so for oligometastatic disease - sometimes defined as less than 5 mets. In such a case, the idea is that a cure may be possible.
I haven't read of support for surgery in non-oligo metastatic cases.
I too was 56 when diagnosed, 15 years ago. I certainly would have jumped at anything that might substantially improve survival. It's not clear from your post why his doctor thinks he is a good candidate for the trial.
Some will point out that there are better options than the lupron arm.
My feeling is that you should discover as much as you can about the motivation for the trial before deciding whether the prostatectomy is a good idea. & if you decide it's a good idea, why take a chance on being in the other arm? It's too important a decision to be at the mercy of a toss of a coin.
I would expect very poor accrual for such a trial.
For me, it comes down to the quality of life issues. Prostate cancer is like one of the only cancers where we don’t go after
The Mother ship. Stage 4 breast cancer, they take the breasts. Stage 4 kidney cancer, bye bye kidney. Then we treat the metastasis.
Some men opt to have Orchiectomy as opposed to ADT. Studies have shown that men who have the boys lopped off do better than men who do not.
Studies have shown that in much the same way some men can benefit from prostatectomy in advanced cases.
The entire reason for this trail was due to data collected over a number of years from men who had Prostatectomy but the cancer had already spread but was not found until after surgery. Statistics once again have shown that men who had the prostate removed did better than men who did not.
The problem is that having the Prostate removed has its own challenges and side effects. Also, when dealing with advanced disease it most likely will not be a nice clean nerve sparring prostatectomy.
I’m terms of QOL I can only speak to my own diagnosis and treatment. I am Atypical in my journey. I have been stage 4 since DX 14 years ago. My doctors and in my opinion God, have kept the cancer under control. After many trials and try’s I am able to have a semblance of normal intimacy with my wife. I don’t wet myself when I sneeze or cough.
Bottom line, be informed and make the right treatment decision for yourself.
Why not lupron With zytega? That combination has been proven in phase 3 trials to increase survival some 40%. Its incredibly rare To have such a huge increase in survival on a new trial. Many oncologists considered it the most positive result in decades for prostate cancer. Not sure I wouldn’t just go in that direction instead of a new test. Highly unlikely that a new trial would show that good of a result.
I had prostatectomy(RP) in April of 2018, while on Zytiga+Lupron. My 2cents: I would avoid the control arm of this trial. Zytiga (or Apalutamide) +Lupron is far superior and proven combination. There are definite proven benefits of doing local therapies if you are "Oligometastatic", but less clear if one has widespread disease. Some population studies show benefits, while others don't. I decided to do it because I could tolerate the side effects (younger age, asymptomatic), and I really did not want to leave the mothership of mutation sitting right there next to all my other internal organs. There's also a (new?) theory of metastasis progression that suggests that cancer cells on metastatic sites do migrate back and forth to other sites, including the original tumor site. So the mothership is still actively involved in the seeding/mutation process.
As far as side effects, incontinence and ED are the main issues. Incontinence has been getting better over time (I'm now at 99.9% of pre-RP), and if you are on Zytiga+Lupron, ED is already a forgone conclusion, but there are effective treatments for it.
I was dx more than 7 yrs ago. PSA in the 40s and climbing fast. 4 mets to the bones, Age 54 and otherwise healthy. I went on Lupron for 3 months and then had the prostate surgery. I was (and still am) treated at MSKCC and my surgeon was a very experienced and highly touted one but he did the surgery old-school (i.e. not-robotic). I also had more than 30 lymph nodes removed (one was dirty), so I have a 12 inch scar. I am fortunate that I can still get an erection,although the lupron has destroyed my sex drive, and shrunk my penis. I wore a pad for urine leakage for about 2 weeks, and now only have an occasional episode where I may leak a few drops (or feel as though I am about to do so) of urine from a big cough or big belly laugh. Having said, that, I have never had to change my underware. Because my surgery was open and included the lymph nodes, it was a painful recovery (and I have had numerous surgeries including a hemorrhoidectomy, knee replcement, back surgery, swelling from infection while in a confined cast- which was insane) and others)so I know what painful means. But- I wanted to do everything possible that might help me live longer and watch my kids grow up, so I went for it and am glad I did. Lupron is still working for me. And- for those who think I should be on Zytiga- I was on Z for a few years, but my doc, who is well aware of the research- (which I believe was done at MSKCCC) decided to remove me from it and I followed her lead. Good luck with whatever you decide.
No experience, but here's my thought, the horse is out of the barn, no need to close the door (RP). There are many other treatments, your doctor should have at least mentioned them. Maybe time to go to a cancer center of excellence.
Surgery will remove most of the tumor tissue in the body and I think it is therefore beneficial for your husband. I would just get the operation done and avoid the control arm.
Here is a study which has the result that surgery is slightly better than radiation:
And this study makes a comparison of surgery with the radiation done in the STAMPEDE arm H. Allan's blog entry, which he mentioned above, refers to this STAMPEDE result:
There is merit to Brachytherapy and IMRT. About the same results as a Prostatectomy. Me, I went the radiation route 16 years ago. Talk it over with the Medical Oncologist. I went with a trial, nothing wrong with that....
I'm in the MD Anderson trial, which was randomized, with half receiving SOC only and the other half either RP or radiation. I was in the RP arm and had the robotic surgery 20 months ago, after completing chemo (taxotere) a few months before that. I bought into the "remove the mothership" idea, and so far so good. PSA undetectable since shortly after surgery and scans look clear. I have been on Lupron continuously since Dx July 2017, but no Zytiga nor any lutamides (yet?).
Do what you decide is right for you, but I'm happy with my path.
I’m one of those people who picked the short straw without knowing it. I was diagnosed with Gleason 9, but no evidence that it had fled the mother ship. So I had an RP and thought going in that it would be done and over with. The surgeon said he got it all, but within 2 months my PSA was skyrocketing, in the 3rd month I had a bone met and the rest is history.
So, in my head, the RP was for nothing, and man do I wish I had it back.
Yeah I had kinda the same deal. After my RP my PSA never went down to what they wanted to see, so now I am being irradiated. As did you, I thought that the RP was going to be the end of it, everyone told me that was almost sure to happen. I wonder what the actual percentage is of people who have had a RP without a cure effected. Pretty high I am guessing.
I did the radiation to...nothing. I have to tell you, I miss that prostate...we had some good times when we were together...memories 🥺
So we emailed for more information about the risks and benefits of a prostectomy from the md Anderson dr and received the response that since this seemed to be causing my husband and I so much stress this was probably not the trial for us. Although I think it was not the trial for us i would have liked the information because maybe we have been able to better determine whether it is a good idea to pursue a prostectomy or not. We are going to see dr. Sartor at Tulane. Maybe he will have some time to answer questions.
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Right treatment path? 
recurring lymph node prostate cancer
Now off Xtandi trial. Rechallenging with Taxotere next. 
ADT stop or not
