I posted previously after I was first diagnosed and had some great feedback. I wanted to try once more after being able to spend the past couple of months researching and trying to make the best treatment decision moving forward. For anyone similarly affected, it might help to reflect on what I've researched as well. Any feedback would be greatly appreciated.
My biopsies showed Gleason stage 2, 3+4 at the worst with one biopsy showing around 25% of tissue affected in the right anterior mid apex which also puts me at the favorable intermediate stage. There were two other positive biopsies at just 3+3 with 3 and 8% of tissue affected respectively. Everything else of 14 sites was normal or atypical/suspicious.
I know that I could consider AS if I was much older but I'm 53 and otherwise healthy so I definitely do want to obtain treatment now. I think there is always some potential for a site that was missed that could be more aggressive, and believe earlier treatment is better to minimize risk for progression although I understand the trade off is dealing with adverse effects of treatment for a longer part of my life and accept that risk. I also don't want to pursue local therapies (cryotherapy or high intensity ultrasound) for the same reason.
That being said, it seems to goal should be to minimize adverse effects as long as the treatment is equally effective. After spending a large amount of time comparing RP to radiation (using modern IMRT and IGRT), it appears radiation might be a better choice for someone at my stage. At favorable intermediate stage, ADT therapy is not recommended. If it was, I would choose surgery in a heartbeat. I think that would be worse than other adverse effects of treatemnt. In the ProtectT study, my understanding at 10 years, cure rates were not different than surgery and at 15 years there was no difference in metastasis.
If success rates are the same, then it comes down to adverse effects. It appears that there is much less risk of incontinence with radiation, which to me seems like the biggest adverse effect. It's less invasive so no risks of surgery or anesthesia, no pain, no recovery time, no urinary catheter for a week after surgery and no significant difference in risk of ED (possibly more later vs more sooner with surgery). The trade off's being that there is more likely short term urinary tract and bowel irritation possible with radiation and that some prostate tissue remains so there is always going to be some level of PSA produced and may be less sensitive to monitor for recurrence. There's also some concern with later date increased risk of bowel or bladder cancer but appears very low and that may have been a bigger issue in the past when the radiation was not guided by CT with each treatment, and much less precise.
I do like the idea of having the prostate gone completely and so surgery is appealing from that perspective. They also have the tissue to examine and may give more concrete information about anything else that (was) there.
I did speak with someone who had proton radiation and said he didn't have any side effects at all. I know that the idea is that the radiation may be able to be a little more precise and avoid collateral damage. However all the research I could find to date suggests it's not better (or worse) than modern external beam photon radiation.
It's so hard to predict because every man of course may respond better or worse to one treatment vs another. I appreciate any comments and guidance!
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sounds like you’ve done a lot of good research. I don’t know we can add much to that. Take your time, weigh your needs and tolerance for the processes and outcomes and then decide. Also weigh the experience and fit of the docs doing each procedure.
Have you had a Decipher test performed yet on the biopsy tissue? I'm 51 and my biopsy showed 3+3 and small area of 3+4. I selected SBRT and the initial recommendation was for no ADT. Once my high Decipher result came in (0.84), that recommendation changed to 6 months of ADT. I suggest asking your doctor for the test if you haven't already received it. My doctor at UCLA said he considers the Decipher test to be very accurate and, in some cases, better guidance for treatment than the Gleeson score.
Dear Tony TxJust to say that I on the other side of the pond am also going through my due diligence in comparing the two options.
I am plagued with obstructive issues be it poor flow and nocturia as well as having 3+4 grade 2 pc.
I have looked at Retzius sparing nerve sparing RALP surgery. Continence rates are excellent 95% of men have Continence within 2 months. Plus they will put a suppubic catheter. With the prostate removed then this tends to help with obstructive issues whereas radiation seem to not make these issues better and sometimes makes it worse.
There are many medical papers on Retzius-sparing technique which indicate the improvement over conventional RALP surgery where they go straight through the Retzuis region. The Retzuis region being where many connective bits are with the bladder and hence traditional RALP did not help with the returning of continence.
I am still in discussion with the team of Radiologists and I hope to have bottomed out what they are offering by the end of the week. So it see,s to me that with surgeons offering Retzius sparing RALP then continence is far less of a problem. Yes there is the invasion of surgery but for me it would be good to not have to wake up three times a night and trot off to the bathroom.
It also seems that surgeons need to be well practiced in performing this operation and it seems like once they have done in excess of 50 operations then they become well versed in it . So anyone thinking of this needs to ensure their surgeon's record is one of high volume and excellent results.
Hi, thanks again for your comments. Ted Schaeffer in the US is talking about the same thing with fascial sparing surgery. I'm not sure if that's the same technique or not but he's giving the same continence rates. I already have nocturia and have for years, but I also drink a lot of fluids. I don't really have other flow issues. But I understand your concern not wanting to make a pre-existing issue worse. I've also had longer term IBS symptoms so hoping the radiation doesn't make that a lot worse either. Doing a quick web search, I saw that MD Anderson in Houston does the Retzius technique. I'm near Dallas so Houston is about 3-4 hours away. At this point, it's been several months since I was diagnosed and while I know these changes take place over the long term, I'm starting to also feel analysis paralysis and just want to get a decision made to move forward. It's hard to temper that vs. how much time to take to make the best decision.
Edward “Ted” Schaeffer, in Chicago did my surgery 2 1/2 years ago. I was 49 years old, active lifestyle. My concerns were the same as yours. Due to my age and intermediate favorable PC, surgery was the best choice for me. My advice if you choose surgery is find the best surgeon with a lot (1,000’s) of SUCCESSFUL outcomes. You only get one shot at this.
Thank you for replying. I’m familiar with Ted Schaefer from Peter Attia’s podcasts and Dr. Walsh’s Guide to Surviving Prostate Cancer. I think he did Ben Stiller’s RP as well and went on shows to discuss the benefits of PSA screening. He definitely seems to be one of the preeminent urologists in the US. Did you travel to Chicago just for the surgery? Have friends or relatives there or just stay in a hotel? While having him do the surgery would be great, I’m not sure about the logistics of having surgery done in a different state.
Just curious what made RP your choice over radiation? I’m not finding any convincing reason to select RP for myself when the risks for incontinence seem almost certain to be higher short and long term and the data shows both to be equally effective. I’ll probably always second guess my decision since there are upside and downsides to both decisions.
Looks like this study in the American Journal of Urology showed that the Retzius technique led to better immediate post surgery outcome with continence but longer term no significant difference: "Immediate urinary continence was higher in Retzius-sparing robot-assisted radical prostatectomy group (70.4% vs 58.1%, p=0.02), with less nocturnal enuresis prevalence (p=0.011) and bother (p=0.009) with no significant differences afterwards. A better quality of life (p=0.004) was reported 1 week after surgery. No other differences in functional or quality of life outcomes, perioperative parameters, complications or margin rates were found." auajournals.org/doi/10.1097...
And a meta-analysis which showed similar results - better immediate continence but less significant if any long term difference . There was concern with positive surgical margins being more common with more severe disease. But, it sounds like it would be a good choice, if available, over traditional RP, as long as one doesn't have a higher grade cancer. ncbi.nlm.nih.gov/pmc/articl...
Dear TonyYes I agree that it is a problem in becoming calcified in your own paranoia because you feel that there is an optimal solution and its your own duty to find it. I must admit it is all very bewildering and you feel like an expert in the field having read hundreds of medical papers, watched countless videos on YouTube. It is so easy to get caught up in it all and you end up struggling to see the woods for the trees. Professional often do not help because they are passionate about what they do and what they offer.
I still think that we are lucky because if we pick either surgery or radiation treatment it will sort the cancer out because its been caught early. Then the issue after that is what is important to quality of life. Since I am approaching 65 then I do not think that I will be having any more children. Continence is a big deciding factor, and that for me covers obstructive issues. I have been religiously doing my pelvic floor exercise to try and ensure that the pelvic muscles are as strong as they can be. I do not think that I can dramatically improve in that area yet the obstructive problem is no better. So for me with poor flow and regularly trotting off in the night, and thereafter not getting back to sleep, and getting up in the morning feeling like I probably had not bothered going to bed, much of my driver for which treatment revolves around hopefully making this situation better and certainly not worse. My thoughts is that with the prostate gone , there can be nothing pressing on the urethra and inhibiting flow. With radiation its suggested that it could put more strain on the situation of flow.
Radiology suggests that since there is not much grade 4 cancer then various options are open to me and they are very confident that it all will be zapped and since their machines are so accurate at delivering the radiation and even tracking slight natural movements of the prostate during treatment then there is a very small amount of radiation spillage. They do not recommend a gel spacer since they have so much confidence in their machines. 5 one hour sessions of none invasive treatment and its done.
Having spoken with Radiology today and chatting it all through I did come to my decision and have opted for Retzius-sparing nerve sparing RALP performed by a surgeon with high volume cases and excellent results. 2-3 hour surgery 2 nights in hospital. Catheter through the stomach rather than the penis. Greater degree of ease of use. When the prostate is removed there is a pathologist in theatre who snap freeze the tissue and then checks under a microscope if there are any cancer cells near to the nerve fibres. If not all the nerves and vascular bundles are left in place. I hope that this will be the case with mine since they have detected pc early enough and the cancer has not approached the nerves. If the nerves and vascular bundle is preserved then the chances of ED are minimised.
As I say it was a toss up between the two, either radiation or surgery, and i would have been very happy with either option but what tipped the balance for me, was the prospect of obstructive issues maybe being made worse. I also think that there is a psychological perspective to surgery, in that once the prostate is removed then there is "certainty" that its gone. However in saying that just because its gone does not mean that there is zero chance of pc recurring since some cells might have escaped. But that's a different story.
Obviously this is my choice based on the treatments available to me and on weighing up the pros and cons. Some people might suggest why go for such an invasive procedure when all surgery carries its own inherent risks when there is a simple, non invasive, quick and effective alternative? I value having less obstructive problems going forward as something that's worthwhile and surgery could help rather than possibly hinder.
Best of luck with everything and I am certain that whatever decision you take is the best one for you having religiously undertaken your own research.
I can keep you posted as to how the operation went and any post operation issues, if that might help?
I think your understanding re catheter is wrong. The catheter through the penis will surely be there. Some surgeons employ an additional belly drain for draining off lymph fluid and check for urine leakages. Others feel so sure that they have done a great job that skip it.
Dear Justfor,I am sorry that i did not explain it properly, I believe that the correct term that I should have used is a supra-pubic catheter in which drains urine from the bladder via a tube which comes out above the pubic bone ie poking out from skin of the lower tummy. This is an alternative to the urethral catheter. They say it is far more comfortable especially considering the surgery. I am all for as many helpful things as possible.
Thank you for the extra info following which I did a Google search. I found that in the case of radical prostatectomy (to be distinguished from simple prostatectomy or other transurethral procedures) suprapubic tube urine drainage mandates a watertight anastomosis. And this is a workable scenario. But, what happens when the anastomosis comes out leaky. The occurance of such a failure, I was told, is in the few % but I was unlucky enough to get one. Long story short, 3 cystographies and one month wearing the transurethral catheter before attaining watertightness.
Dear Justfor,Really sorry to hear that the anastomosis was one of the few that did not work out first time round. I must admit that part of surgery is what I see as the critical bit and when weighing radiation v surgery up then I placed weight on the radiation side of the scales because of the fact that they cut the urethra from the bladder then reattached it. Always a scary thought. However I did pin the surgeon down and asked as to what his record was like on sowing the urethra back on. Having performed over 4000 prostate surgeries then he assured me that he is expert in this area and takes great pride in his sowing. He did quote me some tiny numbers of cases where there were problems all of which were fixed at some point. As I say I think it is an area where you have to rely on the surgeon skill and expertise and like all things of a medical intervention then there is a risk.
I hope that you are all good now with no recurring problems going forward?
Agreed. It feels a bit overwhelming to digest all the information, make sense of it, and make the best decision. And easy to get stuck over-analyzing. It sure sounds like you're making the right decision. If I had a urine flow problem then I would probably want to make that same choice. For men at our stage, deciding between radiation or surgery appears to mostly be about whatever minimizes impact on our quality of life. Did they suggest ADT in your case or recommend radiation without it? I believe you said you're in the UK. Do you go through the NHS or private care? I am just curious but regardless it sounds like you have all the same options available that we do. I've heard that if you going through the NHS there can be a long wait so don't know if that's been a factor at all. I think Justfor's comment about the urinary catheter is correct. I don't think that there could be a urinary bladder catheter placed through the abdomen. But even if they do, that's very short term inconvenience. I wouldn't let it be a factor in your decision.
Dear Tony Tx,You ask about our NHS service. I started off my journey with the NHS and to cut a long story short the doctors failed to refer me onto the NHS urology team. In terms of timings there are set times between being referred to urology and being seen. 14 days. However you are right in that the NHS is under pressure and many people endure delays. Also there is a zip code lottery in that certain areas in the UK suffer less good service. But ultimately NHS is a free at point of service and anyone that pitches up will be treated. It's been going for 75 years and it certainly is a jewel in the crown and I wonder what our little world would be like without it.
However since the initial doctors came to the wrong diagnosis of a benign prostate hyperplasia rather than thinking that there was a case to be referred forward for further assessment and I was never convinced that they answered my question of "how can you be sure that it's not pc". So I evoked a private medical care policy and within 3 weeks of a MRI scan and then a transperineal biopsy it revealed pc.
I have addressed the issue of misdiagnosis with the NHS doctors and they have taken my concerns on board and put things in place to prevent the same thing happening be it ensuring that PSA samples have the serum separated with 16 hours since PSA levels drop the longer that the remains in whole blood.
So in terms of being able to access treatments then I have found myself in the very fortunate position of being able to get myself in front of some outstanding medical talent be it be surgery or radiation. So I have been particularly lucky.
Very interesting story. As you probably know the medical system in the US can allow those insured excellent care but can be driven by insurance companies. In some ways your system is better but in some ways it's not. If another person had been misdiagnosed and couldn't afford private care, I guess the misdiagnosis would have been permanent. But that's another huge topic in and of itself. I'm sorry about your misdiagnosis but glad you were able to get it sorted out quickly and on the way to hopefully eliminating the cancer completely!
Dear Tony TxI do not think that there is any ideal medical system. In Switzerland you pay no income tax but everyone in work is required to pay for medical insurance. Or in France or Sweden they have outstanding health service but their taxation system is very high. So it's all horses for courses.
In terms of me being picked up by the NHS at some point then I would have trotted back to the NHS doctors a year after the misdiagnosis for my annual PSA test and I suspect at that point they would have spotted that the level had risen from 5 to say 10? ( currently 8.9) and then the alarm bells would have rung and I would have been quickly seen by the specialists in urology. However by then ,ie 5 months down the road ,who knows what damage ,if any ,would have been caused because of the delay in spotting pc? The pc would have been dealt with by NHS but would I then missed out on specific curative treatment namely the procedure that I am now having? Not sure?
However my view of the misdiagnosis now after long discussions and correspondence with various parts of the NHS be it labs, the department that issues guidance to doctors, the doctors(GP ( General Practitioners) )themselves then there is lots of blame throughout the system. The doctors have apologise and are keen for no repeat. I am trying to get these other parts of the NHS to come to their senses and sort specific problems out. Men often get the thin end of the wedge in our NHS because of traditional male stubbornness in not going before the doctors quickly enough and when they do it is often not good news because men have left problems build up. But maybe the doctors are now getting more attuned to men's pc problems?
At the end of the day we all make mistakes. It's how we learn from these mistakes and ensuring that they do not happen again that is important. Because of their mistake and me also having private health care then I was probably forced into using it to ultimately fast track me through to where I am now. Maybe there are things in the world that are meant to be?
But I am now very pleased that I have made up my mind as to what I believe was the best for me. I am now on the path i picked and hoping to be peaing like a stallion in 3 months and having less undisturbed sleep! Fingers crossed.
I can tell that you have researched the subject tirelessly and that you will get to the same point that what you select is what you feel is something that you are very comfortable with and once you have treatment and the cancer is cured then that big burden has been removed .
As I say if it helps I can feed back my post -op details as to what went well or not so well.
Thanks for all your help. It's always good to chat things through with others in the same boat.
I was diagnosed 18 months ago with intermediate favorable. There is a difference in our age at diagnosis. I was 74. I decided that radiation was my best option, but my RO was pushing a 4 month Eligard shot. My urologist agreed with him. I had more apprehension about ADT than the radiation treatment. My body was influenced by low T for about 6 months. Radiation was a non-event except for the daily time commitment. ADT was not horrible, but I’m hopeful that ADT will remain in my rear view mirror for the remainder of my life. My thought to you is, if a “short course” of ADT is prescribed, don’t discount radiation for RP surgery.
Thanks for your comments and glad to hear the radiation treatment was a non-event. The radiation oncologist I've seen and everything I've read indicates that with favorable intermediate status, ADT is not necessary. I don't know if that's changing more recently? I'm not sure what you meant - "My thought to you is, if a “short course” of ADT is prescribed, don’t discount radiation for RP surgery."? Are you saying even if they do suggest ADT, it wasn't that horrible in retrospect? I would consider that but so far, they haven't suggested it. I've also been on testosterone replacement for about 10 years and recently weaned off after being diagnosed. I can't say I'm noticing anything that bad so far other than my weights have dropped in the gym (not really worth fretting especially considering...) but I imagine dropping the level even lower would lead to more substantial effects.
ADT was prescribed initially because the RO wanted my 61g prostate to shrink before treatment. He said that ADT is also effective at weakening the cancer cells, causing the radiation to be more effective in disrupting cell replication. I lift weights 3X a week and didn’t experience significant fatigue or strength reduction. In my case, ADT did shrink the target. If it weakened the cancer, that’s a bonus.
Though older, I have a similar diagnosis and and am one month undergoing RT. I asked my DR. about proton therapy. I am 300 miles from a machine and he said that is normally used for brain tumors and the beam can be negatively affected by gas bubble so it is reluctantly used.
I chose monthly Eligard for my ADT. At the end of the first month and no side effects except little interest in sexual activity.
Despite the insertion of a barrier, by the second week, my rectum has become very irritated as I've experience some diarrhea, but I've learned to manage that with immodium, double up daily flomax and diaper rash ointment. I have 4 weeks to go then 8 more mo. of ADT.
I don't know what I would have done if diagnosed at your age. The RT is only a irritating struggle, but thus far manageable, and I continue to work as an educator. If RT is your decision, I am one voice here to say it was preferable to the possible side effects of surgery.
That's good feedback - thank you. My RO did not recommend ADT with my pathology but with the feedback here, thinking maybe I should also visit with my urologist about his thoughts on that, and also consider the decipher test before proceeding to radiation.
I second the Decipher. I was unfavorable intermediate, but my Decipher was quite low. I still did six months of ADT with the possible risk of spread the PET scan missed. I would rather have six months than find it came back later and it was lifelong. It was not as bad as I feared.
No way I wanted diapers, still fairly young and active at 63, which is why I went with IGRT. No real side effects to complain about. I’m back to normal now, so very pleased with the approach.
Making a PC treatment choice is similar to betting on a sports event. You can research the teams' past histories, study all the statistics for both teams, check all the conditions that could affect the outcome, then place a bet on the team you think has the best chances to win. But ultimately how things develop is out of your control, and will be revealed by time. 🦊
13 years ago at age 65 my Gleason was 4 and 3 and 10 of 12 samples were positive. I chose 40 doses of external beam radiation (no ADT given with it at that time). I did not have side effects from radiation and still have not but it did not cure me. I went on Lupron 10 years ago and am still on it and nothing else. Last PSA was .39.
I can only contribute my experience of treatment and my fear. At age 75 years on 2 March 2023 I had robot assisted laparoscopic surgery by a urological surgeon who had done more than 1700 prostate surgeries. Why surgery and not radiation? Because the cure rate and side effects (incontinence and errectile dysfunction), ignoring time differences, were similar and radiation was an option after surgery but surgery was not an option after radiation. I live a healthy life, no substance abuse (cigarettes, alcohol, recreational drugs etc.), 5 fruit and veg every day, still playing field hockey 2 afternoons per week. Post surgery the catheter was in for 10 days, which was a nuisance and the only pain was during removal, slow removal had me jumping up and down so the nurse gave up and yanked it out which was fast. Incontinence depends on kegel excerises, the more exercises I did, the less leakage I experienced and for me after 6 months the only leakage was when I coughed, then a drop. I drink decaf coffee just in case. Erectile dysfunction recovery is age related and usually takes about one year. I take 5mg of Tadalafil per day . I didn't try a medical grade vacuum device. Initially I did miss my prostate for sperm release during orgasms, dry orgasms are different, longer and more intense. Post op 1.5 months my PSA (Roche) was <0.01 ug/L and post op 7.5 months my PSA (Abbott Alinity) was <0.02 ug/L. In summary I decided surgery because radiation and surgery treatment cure rate and side effects, ignoring time differences, were similar and radiation was an option after surgery but surgery was not an option after radiation. Good luck with your decision.
Hey, thanks for responding. How’s your recovery going? I’ve gone for the setup to start radiation and first treatment is later this month then 26 weekday treatments. There’s some trade offs with surgery or radiation but finally decided on radiation after reading to no end. No right or wrong answer or course. I guess if you’re near my stage it’s important we feel lucky it’s caught early and more likely curable!
Recovery seems to be going well. Prepared myself mentally for the worst, so where I am does not seem bad at all. Since I work from home, was able to go back to work less than a week after surgery. Continence is pretty good. 3 1/2 weeks post-op, and I am ready to up the exercise.
On choice of treatment, I have multiple family forebears with colorectal cancer. So irradiating my pelvic area is something I wanted to avoid. My situation made the choice easy.
Dear TxFantastic news that you have made decision. I am sure that the radiation treatment will all go swimmingly and you will pop out the other side cured.
I think we all go through the same process of researching every aspect of treatments and, rightly, investing time and effort into what we see as the best way forward. I would say that as soon as I committed to my choice I must admit that I felt much better.
I am now 2 weeks post Retzius-sparing RALP. Catheter out. Full continence. (No requirement to wear incontinence pants). No pain. I am peeing like a stallion with none of the previous obstructive flow issues that I had. Histology feedback of the removed prostate in a couple of weeks. PSA test on 11th Jan. Let's hope it is virtually zero.
I am sure that you will have a fabulous result with radiation treatment.
Maybe we are the lucky ones who had pc detected early enough and were fortunate to even be given the luxury of selecting, from several options, a curative treatment?
I wish you well in your journey forward and thanks for your invaluable support and assistance along the way. Take care.
Hey UK! Glad to hear you had your surgery and sounds like so far the results are fantastic! That's great you've had no issues with continence! That has been my biggest concern with surgery. I remember you saying you had some flow issues so you've gotten a great treatment for that as well. You're right, it's important to remember we are lucky to have been diagnosed early on and have a very good chance of cure. It makes going through any treatments seem much less bothersome. Let me know how things continue to go for you and I'll do the same!
I hope that all of your 26 sessions of radiation all went without a hitch and you are out the other side all fixed , fighting fit and raring to go.
Just to say that the PSA test result from a couple of days ago came back with a result of less than 0.025 . I suspect its the lowest threshold level of the test machine. So I am happy. Still peeing like a stallion with only some stress continence issues eg sneezing or lifting too heavy things , but the extra bonus of not having to trot off to the bathroom at night is wonderful and now I can have my full 7 hours undisturbed sleep. Bliss.
Histology on the removed prostate came back which revealed 2 tumours. However the two MRI scans and 18 core biopsy revealed only one tumour. So for that reason alone I am glad that I have had the tumour ridden prostate ripped out.
As I say I hope you are well, fully cured, and life is good.
Good to hear from you and really glad to hear you’re doing well! Hopefully all the tumor cells are gone forever.
My radiation wasn’t too bad. Lots of bladder irritation and intermittent bowel irritation. Still having frequency issues and I’m almost two weeks out from the end of the treatment. They said probably a couple weeks to get better with that, so hopefully will soon. Weird in that it somewhat comes and goes.
Otherwise did not have any fatigue or other problems, so came through fine there! Continued my workouts with no issues. From here it’s just monitoring. Some prostate cells with radiation so there’ll always be some level of PSA though it should stay low. It bothers me sometimes that there are still prostate cells present but just try to put my trust back in the studies (ProspecT I believe) that showed radiation to be as effective as surgery 10 years down the line.
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