Why did you choose your treatment?

To review, I was recently diagnosed w/unfavorable intermediate-risk localized PCa, which means I am blessed and cursed with multiple treatment options as I am too young (64) and healthy to consider AS. Standard guidance is that RP and RT are both effective choices with different SE profiles, just choose which is best for me. Great. Introspection has never been my strong suit.

I have been reading over various life stories here on HW, not so much for outcomes, as these are anecdotal, and so who knows if I would experience the same, but rather to try and glean how you all fought through the clutter of information and made your decision.

Here are some of my conclusions, I would love to hear your feedback on these reasons and other reasons I have missed. Of course, there are many idiosyncratic reasons as well, and many guided by risk factors higher or lower than mine.

Reasons to choose RP:
1) "It's what the doc ordered" - some guys don't have the emotional wherewithal to face the effort of making a choice, "just tell me what to do, Doc", and your diagnosing Uro is happy to oblige.

2) "Get that cancer out NOW, my hair is on fire!"

3) Shortest course of treatment

4) Perception that RP provides the best chance of cure / non-recurrence

Reasons to avoid RP:
1) Near certainty of short term ED & incontinence

2) Fear of permanent ED & incontinence (especially for younger guys, looking at 20+ years of lower QoL)

3) Fear of surgery or co-morbidities that would complicate surgery

4) Fear that sex won't ever be the same - no ejaculations


Reasons to choose RT:
1) Lesser short term SE, particularly less ED risk

2) Retention of close-to-normal sexual function

Treatment type specific reasons:
(HDR, SBRT) - Shorter course of treatment -> fewer (or quicker resolving) short term SE
(PBT) - Perception of reduced SE
(IMRT) - Long track record of success
(LDR) - Only one visit to hospital

Reasons to avoid RT:
1) Uncertainty of effectiveness - may take years to reach PSA nadir, some guys worry too much

2) SE may grow with age, so no Long term advantage for ED

3) Fear of Rectal dysfunction both short term and permanent

(LDR) - Being radioactive

Vynbal,

Actually an excellent question, and one that (I think) warrants a good number of responses.

For me, I was diagnosed shortly after my 56th Bday. My father had died of advanced PC 11 years, almost to the day, before. His experience absolutely colored my decision. At the time I lived in rural central Illinois, and my choices if I stayed local were either open RP surgery, or the 40 treatment sequence of IMRT. Having RALP surgery, or any of the other RT treatments was going to require travel, in the winter time. St. Louis was a 2 hour drive each way.

That reality factored in to my process. SBRT was just then coming online for PC in the area--it was one of those things that took time to travel across the country. The track record just wasn't there at the time where it was available to me.

What I was left with, then was 6 weeks of IMRT, done locally, or travel to St. Louis for treatment--and the surgical option was, for practical purposes, a single trip, an overnight hospital stay, and then a single follow up visit 6 weeks later.

I also was interested in having a final pathology--which proved important. I was one of the 30% or so who had a post-surgery Gleason score upgrade, from G6 to G7 (3+4), so I got bumped from low risk to low intermediate risk--and from having 3 positive cores on one side to have involvement of ~10% of the gland in all 4 quadrants. That confirmed, for me, the decision to NOT do AS--I'm sure that a follow up biopsy, targeted with MRI, would have wiped me off of AS pretty quickly.

As far as the risk went, I knew I was otherwise healthy, and I also knew that the opinions here about the severity of, and likelyhood of post surgery ED and continence issues was overblown and overrepresented in the large population. The surgeon was glad to share with me his personal experience with cases similar to mine, and I still remember what he said about both issues: If you honestly (this is important) grade yourself on those two scores on a 10 scale, typically you will move down 1 or at most 2 grades immediately post-surgery, and will recover to where you are now. Which is what I found to be true.

So, the short summary is that I chose surgery for these reasons:

1. Certainty of diagnosis
2. Reasons relating to time constraints, distance and travel requirements
3. High level of comfort with the surgeon and his team
4. At ease with the potential SE issues
5. Reasonable certainty of being "once and done"

Thanks for your quick responses, both confirming my analysis. Rockin, I would say your response reflects my reason 2 for RP. And Halbert, I see elements of reasons 2, 3, and 4 with active dismissal of the chief reasons against RP, combined w/personal circumstances.

Factors influencing my choice of RP after my G10 (5+5) biopsy:

1. My uro/surgeon told me RP and RT were equally valid treatment options for my situtation and that I would have to make a choice. He offered to set me up with an RO. The literature I looked at seemed to confirm this for high-grade men. Only when I specifically pressed him did he offer that he would counsel a brother with my PCa status towards surgery. We discussed treatment options for me at two post-biopsy office visits.

2. I was satisfied with his good RP outcome stats regarding continence and potency. I had had an excellent outcome with him for a previous TURP operation for my BPH. Since I saw him for years and every 6 months since my TURP, I got to know him through our chats and respected his knowledge. (He also mentioned procedures that are possible if continence was not sufficient post-op).

3. I had reason to believe my PCa had been caught early or very early and had a good chance of being prostate-confined: (a) relatively low PSA; (b) clean bone scan and CTs; (c) nine previous negative biopsies; (d) I was having 6-monthly uro visits after my TURP for BPH; (e) the nodule he felt on DRE was new.

4. As I was leaning toward surgery, I also preferred an open procedure rather than RALP, and, by chance, my uro did only open.

5. I preferred to deal with any negative RP outcomes soon after surgery rather than any negative RT sequalae years after treatment. Since I was willing to bet on my PCa being prostate-confined, I saw no oncological advantage to having radiation act over time on my cancer cells versus having all the PCa removed by surgery, especially regarding met potential.

6. There seem to be no studies on the effect of RT on BPH.

7. For my high-grade PCa I was looking at a long course of ADT if I chose RT.

8. The possibility of needing only surgery (without RT and ADT) was very attractive -- was was knowing RT and ADT were there for any needed adjuvant treatment and still are for any salvage treatment.

Thoughts on my RP choice with hindsight:

1. From my outcome, it appears my PCa was, in fact, prostate-confined (path stage pT2 R0, G9 (4+5). I've learned that this fact correlates well with good oncological outcomes, whereas Gleason score does not appear to matter much with prostate-confined disease. I was already experimenting with sildenafil because of BPH-related ED before surgery, and still use it, but only sometimes, now. I am 99.99% continent.

2. Recent studies have leaned in favor of RP (+ RT/ADT if needed) having better overall survival (OS) than EBRT + ADT for localized disease (i.e. not necessarily even prostate-confined) in high-grade men. A study just published by D'Amico et al. calculated 93% vs 87%, and 76% vs 60%, respectively for 5- and 10- year OS.

Results for EBRT + brachy boost + ADT (vs. RP) have been varied and may or may not yield better BCR statistics, but expert RO's point out that good BCR stats do not guarantee better overall survival. It takes a long time to have OS stats for new RT treatments. Optimal RT doses for the newer hypofractionated regimes are still being worked out.

3. It turned out that my prostate had grown back half of the weight that was removed during my previous TURP, and if I hadn't had a RP, I may have been needed a second BPH procedure in a few years. Again, studies on the effect of RT on BPH are, AFAIK, non-existent.

4. My Decipher score was low-risk for the chances of metastases within 5 years (August will be my 4-year mark).

5. I don't think my "let's have it out now" reasoning above was unfounded: studies of 2-year post-treatment biopsies on men who chose RT show there can be viable PCa cells remaining that give rise to recurrence. In other words, all recurrence in these men may not be caused my micromets that are there before RT. IMO this isn't an insignificant consideration with high-grade disease.

5. My post-op uPSA was 0.010; it was 0.020 approaching 4 years post-op.

6. Since my RP, the issues of impaired mental cognition and cardiovascular risk with ADT have become of greater interest and study.

7. If you go the surgery route: overall stats for continence and potency outcomes with RP don't matter as much as the stats of the surgeon who is doing your RP! Not all surgeons are equal. When interviewing surgeons asking about their stats for these outcomes is just as important as asking the number of RALP procedures they have performed. Looking back, I would have gone with my surgeon even if he did only RALP; however, I do think an open procedure can have advantages over robotic for high-grade disease, better access to lymph nodes being one of them.

Djin

When diagnosed with high risk PCa and a very significant tumor load, my urologist spent more than two hours explaining the situation and all treatment options. He included all types of surgery, radiation, drug, cryo, HIFU. nanoKnife, AS, etc. and didn’t miss a one. This included extensive use of nomograms from John’s Hopkins and MSK. It was actually a dinner meeting after regular hours in his office.

He drew two conclusions and one requirement that guided my treatment path.

First, he concluded to rule out surgery. He stated that surgery would not be curative and I would then have to have either ART or SRT. He said to avoid surgery plus radiation at all costs as this combination is the most invasive and damaging resulting in the most significant negative treatment side effects. He said if I wanted surgery that he would refer me to an excellent surgeon, but that he would not operate on me.

Second, he recommended HDR Brachytherapy plus external beam radiation (IMRT) including the pelvic lymph nodes and ADT for 24-36 months.

The requirement was that I meet with another surgeon for assessment and with two radiation oncologists, one for HDR brachytherapy and one for permanent seeds brachytherapy. After the assessments I was to call him if I wanted to employ him to direct my treatment. If I didn’t get the additional assessments, he would not accept me as a patient.

As I did this, I actually met with two surgeons, the two ROs and one medical oncologist that specialized in PCa and breast cancer. Both surgeons said no to surgery for the same reasons that I was too far advanced. The MO said he treats men daily that have had surgery and radiation and the negative side effects are much more significant than radiation therapy alone and strongly suggested the combination radiation as initial treatment. He agreed with the ADT.

I chose to keep my initial urologist to direct my treatment and chose the HDR based on fairly extensive research into brachytherapy. This included an essay in Fortune magazine by Andy Grove, founder of Intel, calling HDR brachytherapy as the cutting edge of treatment technology and with the lowest reported negative treatment side effects. He successfully used HDR brachytherapy and controlled/cured his cancer.

Additionally, based on my research, I concluded that surgery is unnecessary in the treatment of PCa. And I thought, why cut when it isn’t needed and is no better than radiation for cancer control? Actually would have been worse in my case. And why, if 35% of surgeries fail and they use radiation to attempt to salvage a cure, wouldn’t you just use radiation to start with? I have often jokingly remind people that in Star Trek the doctor “Bones” never operates as they have developed non-surgical technology to treat and cure.

I used the treatment combination successfully. After more than 10 years post treatment I remain cancer free and have absolutely no negative treatment induced side effects. All plumbing works wonderfully well. I remain pleased with my initial focus on getting independent assessments (not second opinions, what a terrible term) from board certified specialists including the MO as I wanted to get a perspective from the professional that has to manage men whose initial treatments were not curative and had no interest in the initial treatment options. And very importantly, I was blessed to be referred to a superior urologist that was first concerned about my overall well being and not biased as to his surgical speciality.

I am now even more convinced that radiation as a primary treatment is superior to surgery for both cancer control and minimal side effects. And then add in the treatment convenience and it is even more apparent. As you are an intermediate risk man you can get your initial treatment in one or, at most, two non-surgical treatments. Permanent seeds is one outpatient four hour procedure. HDR brachytherapy is one or two such procedures and you are exposed to radiation for less than 30 minutes total. SBRT is 4-6 non-surgical procedures of about 30 minutes each. In all these cases there is no hospitalization and surgery so no real infection risk. No physical limitations like lifting or going to work. No catheter or training the one last urinary sphincter how to do all the work. No risk to physically damaging or removing the nerve bundles. I have yet to meet the man that used radiation and is wearing a diaper, or getting an artificial sphincter, or penile implant. I know many such men that used surgery. These were all part of my calculation in choosing radiation.

And to clarify, I am not anti-surgery. Since my PCa treatment I have had three significant surgeries for eye problems, a bad knee and inguinal hernia. In these cases, there is no other viable treatment, so of course I would have surgery. But, PCa is very different and men like me are clear evidence that surgery is just not necessary to successfully treat PCa. But the main thing is to completely understand and accept the treatment options, success rates, and consequences of the probable and expected treatment side effects. There should be no surprises later. In my experience, that only happens to men that employed insufficient research before choosing a treatment path.

I was given the choice of radiation or da Vinci surgery.
Urologist said he thought there was a chance of being cured.
I jumped at that.
I didn't worry about about incontinence or the possibility of not having erections (although it certainly crossed my mind later)

At the start of 2013, after confirmation of PC from biopsy, my URO gave me the different treatment choices, RP, Brachy, I am not sure if RT was on the table. I was a 63 year old fit, active guy who was not bothered about RP and just wanted the cancer out. Had the surgery which was not a big deal, but the PC had escaped into a local LN which was removed. Have no incontinence and have a good sex life as we speak at 72 with partial ED. PSA went up after surgery and then back down to 1.17. Inrolled in a PET clinical trial 2.5 years ago where 2 small LN in the prostate area were identified. Had RT and 6 months ADT. Have been undetectable up until now with T= 350.
Best of luck on your future decisions.

Dave

The very first statement of your otherwise well presented thread...immediately turned me off...ya know...the part about you being too old and healthy for AS and the some how offended way you said...as if some how you were being discriminated against be cause of both reasons id est age and health...neither which are true btw and as usual none of the HW "experts" mentioned this...I may be wrong on that point...as I perused the replies rather than word for word...none the less...tho I did say that the rest of thread was well presented...I actually do not actualize the rest as factual or true...but subject to the legion of "questions" that have routinely been discussed ad nauseum on HW and probably other forums on the reasons,,,theories...guestimates and other vaguaries (sp) this unique dis-ease...hence I will bow out... you are welcome in advance...for another round of sameness...all of which delight most...here...

LDR making you radioactive?? Not sure where that is coming from. I had LDR stranded seeds implanted by Dr. Peter Grimm seven years ago. Dr. Grimm, at the time, was one of the best at his game! He assured me that the usual precautions about holding pets or young children in your lap where just that, precautions that were mostly unfounded.

I had more issues, with Flomax than the actual procedure. All SEs were manageable and quickly eliminated by "walking" and lots of it. The only remaining SE is lost sauce which I can easily live with.

Best of luck on your choice.

Thank you all for your extensive replies, as they helped me to process the firehose of information that came my way, as well as push back and probe for the full range of options and try to solve the ultimate riddle of what is best for me.

As it turned out, my choice was mostly made for me due to individual circumstance, although the process was probably typical for those of us who do due diligence in deciding on treatment. My diagnosing urologist set me up with a consult with a RO in their practice. I set up additional consults w/the Maryland Proton Treatment Center and w/Dr Alan Partin of JH, and arranged for a pathology 2nd opinion from JH. The ROs ordered CT, Bone Scan and MRI.

Dr. Partin ruled out surgery because I was diagnosed 2 years ago w/Brugada Syndrome - a rare defect in the sodium channel in the heart that does not preclude surgery, but adds risk and requires additional precautions. "Since RP and RT provide equivalent cures, why add unnecessary risk w/surgery", was the advice from the surgeon.

JH confirmed the biopsy, slightly downgrading the worst core from 3+4 <10%4 to 3+4 <5% 4, but also diagnosed EPE, and this was confirmed with the MRI. That moved me from Unf Int Risk to High Risk. It also confirmed RT over RP, and ruled out SBRT (which is not recommended as monotherapy for high risk).

BT would have the same anaesthesia concerns as surgery (due to the BrS), and my ROs said LDR could be done in a hospital setting (mitigating the risks), HDR would be done in the Radiation Oncology lab and they would not be set up to handle a sudden cardiac arrest. So that took HDR off the table, and made LDR less attractive.

At this point the RO from the Proton lab offered entry to a study doing hypofractionated Proton RT w/simultaneous integrated prostate boost. This seems best for me. Yes, this is a Phase 1 study (https://clinicaltrials.gov/ct2/show/NCT04486755) , and so the long term success rate is unknown compared to the other choices (ADT + IMRT + LDR-BT being the next choice in line), but it does avoid the immediate risk of any type of surgery, and does seem to offer a legitimate shot at cure.

And while typically cost/insurance can be an issue w/PT, at the MPTC they charge the same for Protons as UMMS charges for Photons.

As you all have shared, making the decision on treatment option greatly relieves the anxiety and allows me to focus ahead on doing what needs to be done and not looking back. Thanks again, I wish I never needed to find you, but I'm glad you are here.

Sounds like a well thought out plan. Everyone’s prostate adventure is unique so eventually you have to make a decision and move on based on your own situation. You should do well and just remember to pay attention to to all the rules for radiation prep for every session.

Vynbal, good for you to have the decision made. Your process is the kind of process we encourage men to take, to really evaluate the options that are available to them, and then make the call. Your medical history mitigates against general anesthesia if it's avoidable, so that limits the options.

Joining a clinical trial is excellent as well. You'll get high level monitoring before, during, and after, so you'll know quickly if things change (let's hope they don't).

So, again, keep us in the loop as you proceed--and do hang around to share your insights with the next newbie.

Follow on: Short term ED and incontinence not a big deal. If you don't want minimize incontinence period then start doing Kegel exercises before surgery -- it's what you need to do after to restore continence. It doesn't take that long.

Orgasms will be different. In some ways mine now more resemble what i see in a woman: an uncontrollable pleasurable shaking for maybe 10 seconds. Candidly though I do miss the feeling of inevitability and the release of ejaculate.

I mentioned metastatic patients in my last post and you're not metastatic. You think you're not metastatic. Metastases start as micrometastases that are not picked up by any current scanning technology.

Reiterate though: get a surgeon at a large medical center who has done over 1,000 (minimum)