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Posted 5/4/2021 3:37 AM (GMT 0)

NewspaperLover said...
Joe, I have a friend who followed his urologist’s advice and chose AS with a Gleason 7 for over two years. Not good. Midway in year three his PSA spiked. A second biopsy came back at Gleason 8. Opted for surgery — did not go well. Point is, as others here have written, a Gleason 7 is a serious disease. Wishing you well.

He was not on AS! Every AS program in the country will insist on an MRI and then a targeted biopsy within six to twelve months after the diagnostic biopsy. If he had a three year wait, he was not following any known AS guidelines.
Posted 5/4/2021 2:50 PM (GMT 0)
Thanks to all for the supportive comments and additional information on Drs. Preparing questions for my visit with Dr. Beltran.
Posted 5/4/2021 2:53 PM (GMT 0)
Somehow I missed that additional post from you @ASAdvocate. Thanks for the clarifying that earlier post!! That is good to know!!
Posted 5/25/2021 2:50 AM (GMT 0)
quick update - visited with Dr. Beltran at Dana Farber last week. Very good visit. Dana Farber re-read my biopsy slides and increased one of the 3+3 cores to 3+4. % G4 in the 3 cores with 3+4 is between 5 and 30%. She was not in favor of AS at this point. She recommended (and I had) MRI today. Will meet with Dr. Nguyen (RO) tomorrow and Dr. Kibel on Wednesday (SO).

Currently thinking decision will be based on the potential side effects and QOL issues. No great need to have an accurate, true pathology or to get it out. Have time as I am retired and close enough to treatment facilities to easily go back and forth. Hence, leaning toward radiation. Just need to do my "due diligence" on RT and think through the potential SE's.

Will be talking to the Drs. re SE's but any suggestions for good references on side effects and their probabilities would be appreciated.

Thanks,

Joe
Posted 5/25/2021 3:53 AM (GMT 0)
My advice to you at this point is to be careful reading studies about radiation toxicities. There were problems before the age of modern RT, which began about 2004. Since then, beam RT (IMRT, SBRT, and protons) have made great improvements in accuracy, and significant reductions in side effects, including secondary cancers.

Because studies take so long to compile, even recently published ones may cite data from men treated in the 1990's. Be sure to find the dates of treatment.

From my twelve years of research, I have never read any study that showed that surgery could match the non-recurrence results of SBRT/Cyberknife. Not even close. High dose rate brachytherapy also has impressive results for intermediate risk prostate cancer.
Posted 5/25/2021 10:47 AM (GMT 0)
Joe, you're low intermediate risk, assuming the MRI doesn't show anything outside of the gland. This means that pretty much any of the major treatments will do a good job for you. Side effects are tricky--there seem to be many factors involved, not all of which are obvious or predictable.

If they want you on ADT (Lupron) for a few months before treatment, you'll have those side effects to deal with, at least temporarily.

When i was treated, SBRT was just coming online for PC, and I've often thought that if I had been a year later, I likely would have gone that route. However, I opted for surgery, and have had a great outcome, with similar pathology to yours. I've been non-detectable PSA from 3 months post-surgery now for 6 years. Continence and ED are non-issues. So, if you're healthy and in decent shape, you could certainly go that route as well.
Posted 5/25/2021 7:37 PM (GMT 0)
Joe, I'm biased toward radiation so obviously think you're leaning in a good direction. Like AS says, the risks of major radiation side effects are minimal with today's radiation modalities. about the same as dying on the table during prostate surgery. I recommend you focus on QOL issues since you're very likely to be cured by any of the treatments.

You mentioned going "back and forth" for the radiation. That's really only relevant for many sessions of IRMT...which honestly seems like overkill for you to me. There are different specialists who handle LDR Brachy, HDR Brachy and SBRT. All of those options are much less trouble than IMRT (or surgery for that matter) and would seem to be great alternatives for your cure.

Best of luck.

Jim
Posted 5/27/2021 2:44 AM (GMT 0)
Met with Drs. Nguyen and Kibel. Also got the MRI results. The MRI showed a 0.8 cm lesion PI RAD 4 in the lower right quadrant where there were some positive biopsy cores and a 2 cm lesion on the left side PI RAD 3 - cores on that side were negative. No seminal vesicle or lymph node involvement. It appears the lesions are contained wholly within the Prostate.

Dr. Nguyen treatment recommendation was LDR. I asked again about AS. He said whichever treatment - surgery or radiation, I would probably be cured. He felt given my heath and being in good shape, I would not have a problem with SEs. He was not too keen on that. We might be able to think about it if genomic testing of the tumor showed the cancer to be of a lesser aggressive type. We decided that we would have send a sample for Decipher testing.

Dr. Kibel recommended RALP. He did tell me that the location of the tumor would probably require taking of one of the nerves. He really did not want to talk about AS. Like Nguyen, he said either way I chose to go I would probably be cured. Kibel did say as I am healthy and in good shape, SE's should not be an issue. It felt as if he was a bit more of a surgery sales person than Nguyen was for radiation.

Right now will just keep reading up on side effects of the treatment recommendations. When I get that Decipher result in 3 or 4 weeks I want to be ready to choose.

One of the things that Kibel said to me today was that if I choose surgery path, that still allows for radiation treatment later. I know from talking to Nguyen that surgery is difficult if not impossible after radiation but he did not talk about options except for that being foreclosed.

What are the treatment options in each case if there is recurrence?

Tudpock18 and halbert - your diagnoses look very similar to mine and you made different choices. Interesting.

AS, will read those radiation SE reports with a grain of salt - Thanks.

Joe
Posted 5/27/2021 3:07 AM (GMT 0)
Hmmm. So both docs thought each treatment could probably cure you, but the surgeon thought they might have to take the nerves on one side? If you either treatment can cure you, I'd be focused on which could do it with the least SEs.
Posted 5/27/2021 3:14 AM (GMT 0)
“If you have radiation first, you can’t have surgery later” is, in my opinion, a misleading talking point used by urologists to steer men into surgery.

It is difficult to remove your prostate after radiation, but, remember that radiation is a whole gland treatment. So, if there is a recurrence, it’s because the cancer had already left the prostate, and surgery would not be appropriate. Targeted radiation would be the salvage treatment.
Posted 5/27/2021 9:35 AM (GMT 0)
The "you can have radiation after surgery but not surgery after radiation" is a classic sort-of truth. What it implies is that there are no salvage options after radiation IF salvage treatment is needed. So you have several things happening here:

There is a truth: After radiation, if a surgical intervention is indicated, the surgery is an order of magnitude more difficult, with unpredictable outcomes. Radiated tissue is rough to deal with surgically.

Then there is an assumption: The primary radiation treatment won't cure you. The low end chance that you'll need salvage treatment (remember, they both told you that either treatment will likely cure you) is assumed to be a near certainty.

Then, last, there is a really, really major untruth: That after you've had primary radiation, and you have a recurrence, there is nothing else that can be done. Wrong, wrong, wrong. If you have a recurrence, no they cannot irradiate the PROSTATE again (well, maybe, it depends on your initial dose), but they can target a hot spot elsewhere. There are other interventions possible as well.

I hate seeing surgeons who still say thing. And I'm a surgery guy, and I've had a good outcome. I'd be more concerned about potential side effects than about planning for the unlikely need for salvage treatment.
Posted 5/27/2021 11:11 AM (GMT 0)
Joe, I agree totally with AS and Hal re the half-truth-sales-crap about "allowing for radiation later". A surgeon who tells you that is either (a) lying to get your business, (b) half-truthing to get your business or (c) uninformed about possible salvage after failed radiation.

Jim
Posted 5/27/2021 12:29 PM (GMT 0)
And to have a surgeon of the stature of Dr. Kibel say it is surprising, to say the least.
Posted 5/27/2021 12:56 PM (GMT 0)
Joe, the one thing that jumped out at me in your post was that Dr Kibel said "the location of the tumor would probably require taking of one of the nerves." and at the same time said that he doesn't think side eftects should be an issue.
I'm always the first to admit i am no expert, but it seems to me that those two statements contradict each other. I think if one of the nerve bundles are taken, there is a pretty good chance it could (not would but could) affect your erectile function, one of the two major side effects of surgery.

P.S. I'm a surgery guy
Posted 5/27/2021 4:08 PM (GMT 0)
Thanks for all the posts. There was one thing that one of you guys (maybe halbert) mentioned earlier - going with your gut. I did not think about it when I visited any of the doctors but only after meeting with all three did it become clear. My gut reaction when talking with the RO (Dr. Nguyen) was very positive. I felt like he heard me, my goals and my concerns and seemed to address them as he went through his recommended actions. Everything just made sense and tied the existing evidence in my case together with his knowledge and my goals to come up with a logical course of action. It seemed like we all (my wife was there) were on the same wavelength.

On the issue of the one nerve being lost in surgery and SE's, in fairness and in retrospect, I think the URO/SO was telling me that aside from the ED SE of that, because I was in good health, the other issues like incontinence would not be an issue.

So now, will wait on the Decipher test results and look at better understanding of LDR and its SE's.

Thanks!

Joe
Posted 5/27/2021 5:02 PM (GMT 0)
Joe, I think it might have been me with that suggestion: It does seem to be true for many of us--when we have the consult with 'our guy' it all seems to fall into place. You're on a good path. LDR has been around quite a while, and with many men it works well.
Posted 5/27/2021 7:03 PM (GMT 0)
LDR is a great choice especially if it’s guided and convenient. The combination of high success rate and low side effects risk is hard to beat. The nine weeks of treatment everyday was not convenient for my situation. I opted for SBRT and five treatments even though we had to drive a few hours each way. In the long run we saved ourselves time and the insurance 10 grand. I still don’t understand why insurance companies don’t push SBRT over IMRT.
Posted 5/27/2021 7:37 PM (GMT 0)
Joe, since you are more interested in LDR Brachytherapy now you might want to reference a recent publication by Dr. Nguyen: https://www.ncbi.nlm.nih.gov/pmc/articles/pmc7940781/

As he is quite well known, he has tons of research, publications and experience.

BTW, if you want an overly detailed look at one patient's experience with LDR Brachy feel free to copy and paste the story in my signature. I have not updated it in years as the story is basically the same -- fairly easy procedure, cured and no SE's except reduced ejaculate.

Jim
Posted 5/27/2021 9:06 PM (GMT 0)
You have Dr Kaplan for SBRT cyber knife at Beth Israel.
Posted 8/3/2021 2:34 AM (GMT 0)
A quick update - It took quite some time for the Decipher score to come back. I am really glad that Dr. Nguyen recommended Decipher. Decipher score was 0.93 - (i.e. aggressive). Not only did that confirm that AS was a pipe dream but changed Dr. Nguyen's recommendation from LDR alone to EBRT (VMAT) plus ADT (short course). He offered me the opportunity to participate in INTREPID clinical trial. The trial is meant to compare RT together with either (1) current standard of care ADT (like Lupron with Bicalutamide) OR (2) Darolutamide. I have decided to enter that trial and was qualified for it. In a few days they will tell me which ADT treatment I will be selected for. As part of the screening, they did a new PSA at DFCI - 4.73 (up .99 since March). My treatment will start in late August and given the rise in PSA looks like not a minute too soon!! I am glad to have the decision-making phase behind me. Looking forward to starting the treatment and to be participating in and supporting the trial.
Posted 8/3/2021 1:13 PM (GMT 0)
Hi JoeBos -- Congratulations on reaching a treatment decision! I looked up the trial, but didn't see any information on the RT dosage. Do you know any details, e.g., how the dosage is determined?

Thanks,

Djin
Posted 8/3/2021 3:43 PM (GMT 0)
Hi Djin, In speaking with Dr. Nguyen last week, the dose calculations for RT will be done following the seed and SpaceOAR emplacement and the consequent MRI/CT scans. I expect that to be in mid-September. Dr. Nguyen estimated that we would begin RT in early October (so the dose calculations would obviously need to be done shortly before then).
Posted 8/25/2021 2:43 AM (GMT 0)
We are closing in on beginning treatment. I will be on the Darolutamide arm of the Intrepid trial (as opposed to Lupron and Bicalutamide) . I will meet the MO Friday to begin the ADT treatments and have all the monthly trial blood draws and appointments for the trial scheduled out for 6 months. The fiduciary implants and SpaceOar insertion will happen on Sept 20 - I have Zoom call tomorrow with the URO doing that work. No word on the date for the pre-RT CT/MRI. Still looks like we are on schedule to start RT sometime around mid-October. It feels like things are getting "real" now. Been reading the posts by several folks on their RT journey. Hats off to you guys for sharing all the details of your experiences and thanks to everyone else who has shared information and helping me get ready for this journey.
Posted 8/25/2021 1:44 PM (GMT 0)
Joe, Thanks for keeping us all updated on this important trial and thanks for participating in it.. Good luck and keep us posted. Two very good friends treated with ADT tell me that it was not as bad as expected and credit active exercise programs as the reason. My RO says the very same thing about RT. I think exercise makes us all feel better. Terry
Posted 8/25/2021 3:00 PM (GMT 0)
I remember feeling so much better when I started treatment. It's the feeling of doing something positive as opposed to being reactive while you're still in the learning phase. Good luck with the ADT--mine wasn't fun, but it was manageable. Keep us posted.
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