Hi Tall Allen or anyone, what are your thoughts on this.
My urologist informs me I need some sort of treatment for my Grade 2 Gleason 7 3+4. Prostatectomy Surgery he is saying will be my best outcome.
My radiation oncologist says because of my hesitancy when trying to pass urine, my retention, my slow weak stream that bladder neck surgery or a TURP are required before 20 sessions of EBRT can be administered after healing has taken place.
I thought active surveillance was still in my future, they are both saying no, treatment because of tumour pressing and obstructing urethra plus strong family history.
I’m due a PSMA Pet scan on the 14 th of June to make sure no spread. This will guide my decision as well. But I’m lost at the moment as to what decision to make. Any suggestions, any thoughts. I’m 63 this month.
Thanks
Ian.
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Aussieguy1
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My biggest dilemma is they are both saying surgery, the urologist prostatectomy the radiation oncologist a TURP or bladder neck surgery before EBRT.
My thought process says why go through a TURP or bladder neck surgery before EBRT when a prostatectomy will fix the urinary retention, the hesitancy, the weak stream, that the radiation oncologists says will be worse if I have EBRT with out his recommendations of TURP or bladder neck surgery first.
I am well informed because of this site and the sharing informative people on here about the risks and side effects, short term and long term. I have fortunately also had time to read up on some research. But even so it’s a hard decision. Plus I thoroughly respect your opinions and hard work you do here Tall Allen. I have gone to your site quiet often over the years.
Have other members required a TURP or bladder neck surgery prior to EBRT because of retention, hesitancy and a weak stream? How did they get on post all treatments?
I have been commenced on Dutasteride + Tamsulosin 400mcg daily.
I have had Several MpMRI since 2019. The urologist ordered the PSMA Pet scan, I’m happy with that.
I have sought second opinions from urologists, pathologists and radiation oncologists. I still haven’t been ordered any genetic tests, Decipher etc.
I like your analysis of your situation. There's a man in my support group in a similar situation. He has blockage from an "ingrown" transition zone. He knows that RP will fix both problems, but he isn't willing to take the risk of permanent ED and lasting incontinence. However, there is an increase in incontinence risk from the TURP+RT. It is minimized by giving tissues time to heal after TURP. Neither of you are right or wrong - everyone has to make the decision that's best for him.
So true about the decision that’s right for each individual.
I guess the PSMA scan will inform my decision, if it has spread the prostatectomy is out of the question by my understanding.
Honestly I thought I was informed, I thought EBRT was my treatment choice, then I spoke with two different radiation oncologists now I just feel stuck in a way. But I appreciate your input a lot. Plus it’s always good to run it by people who have lived experience.
I have retention of urine after voiding, I have an enlarged prostate anyway, as many of us do as we age, the MpMRI also shows one of the tumours pushing onto and obstructing the urethra partially, my prostate is also pushing up into the bladder wall near where the urethra leads through the prostate, this is causing pain when I urinate and also sometimes when I ejaculate. These symptoms have only developed over the last 18 months or so.
My own path guides my thoughts: I went from 3+3 to 3+4 in 4-5 years. 2 years later the biopsy showed 4+3, albeit only 15% in one core of 12. Out it came! Pathology showed the cancer actually had a extended protrusion but didn’t invade any lymph glands. However the stage went from Grade 1c to 3 something. So I trusted the clinical data in my decision making only to find out it was worse. I had my surgery at age 63. Glad I did as it was always top of mind. Now I only think about it 2x year when I do the PSA test. But everyone’s thought process is different! The surgery and recovery was nothing compared to my 3 level spine fusion. Good luck.
Thank you. I appreciate you taking the time to reply. Ian.
Certainly sounds like you need to come off Active Surveillance and make a decision on what to do going forward.
If you are still at stage 2 then you still have the options of prostatectomy or EBRT open to you. Without going into detail, the main pros and cons from my viewpoint is that surgery is more debilitating in the short term but the effects of EBRT and ADT last for months and maybe a couple of years. I was at stage 3 so my only option realistically was EBRT/ADT, other radiation options are unavailable in the NZ public health system.
But on balance I think I would have gone the prostatectomy route had it been available as I'm still suffering the side effects of EBRT six months after the treatment finished, and am expecting them to last for a few months more
And I'm a little surprised that the specialists are recommending a PET scan before an MRI to detect any spread outside the prostate itself - in NZ, MRI is the first diagnostic tool used, and from that the oncologists determined that the cancer had spread to the seminal vesicles, hence concluding that surgery without radiation was not an option.
Yes I have had several MpMRI over the years. The PSMA pet scan has been ordered pre op, here in Australia it is becoming standard practice in some public hospital systems, it can vary of course from State to State, Dr to Dr. It will be covered by the public health system and my urologist ordered it without any prompting from me. I’m pleased he did as it will help guide my decision. Thanks for your reply.
At 63 you are relatively still young. With a mean male expectancy of 81 you have, on average, 18 years in front of you. Make friends with the idea that there is no cure for this. Only means to slow its progression down. RP has its perils, but if you get through them it is definitive. RT has late toxicities and possibly secondary cancers that nobody talks about, because they usually appear 10+ years down the road. The later you resort to RT the lesser the odds of confronting them. Just find the most experienced surgeon and go with it.
On a side note, your PSMA scan is an excellent diagnostic procedure. Three years ago, when I proposed it to my urologist he responded: "You can have it but it has low sensitivity". Today I realize that this was another silly advise I did get then.
What’s your hesitancy with surgery? I was a Gleason 8. 4.5 years after surgery it’s like it never happened. No ED and no incontinence. PSA <0.02 . Of course I used a world renowned surgeon with thousands of robotic surgeries under his belt. I suggest you do the same if you go that route.
Thanks, yes important note about an experienced surgeon.
It would be robotic assisted surgery, unfortunately I’ve been informed that they won’t be able to save the nerves on the left side.
But I realise each man is different with this disease, some fortunately like you don’t suffer on going incontinence or have significant erectile issues, other unfortunately do, like my brother, my father before him and others I have communicated with. Hence my hesitancy.
But it is fantastic that you are doing so well, as it reinforces that it’s not all doom and gloom for some.
My brother is going through such a rough time since his surgery, it’s the emotional attachment and seeing what he is experiencing that is making it hard for myself to make a decision on surgery. The knowing and excepting what can go wrong for some.
I will make a decision once the PSMA pet scan is done and the results are in. I go for the scan on the 14 of this month.
Thanks for your reply. It’s great you are doing so well.
There is a type of radical prostatectomy called Retzius technique. Recovery from incontinence is much quicker.
Unfortunate for you that the nerves in one side can’t be spared. I was the same so chose LDR Brachytherapy. Radiation most definitely upsets the urethra not immediately but a few years down the line.
Yes I have heard of the Retzius technique thank you for reminding me of it. I will discuss it with my urologist. I know if I decide on surgery it will be robotic assisted. I know my surgeon is extremely experienced. He is head of the department at Royal Adelaide hospital. I’m in Australia. Thanks for your reply.
The hardest decisions are the ones where you have similar outcomes. Do I want to fly or drive to a vacation spot 300 miles away and should I take United or Delta. Both choices get you there. Pros and cons.
Treating this cancer is one of the biggest decisions you will ever make but make it you must. Both choices have similar long term prognosis. Pros and cons to each choice. I looked at as I would writing a large contract in doing my evaluation. My three prioroties were survival, surviving with a good quality of life, and the procedure itself. And the first was most important. I was 58, otherwise in good health, and with a healthy intimate life.
No matter the 5 year studies, in looking out 25 or 30 years, I just wanted the cancer out and surfer Made the most sense. As life events went it was no big deal. Surgery was an interesting process though wish I was observing someone else. Bladder issues tidied up in a couple months. ED got better over two year to the point I’m better than pre surgery though not where I was when I’m 40. PSA checks now annual.
You will get folks on both sides of the issue. I’m happy with the choice I made. It wasn’t like I wanted to get this but I did and I had to make the choice.
I was in your shoes 4 years ago, Gleason 7, 3&4. Cancer encapsulated . Chose RP which took care of the cancer but not without after affects. Dealing with stress incontinence which is manageable and ED. Chance of recurrence is very small as my PSA has been .001 since surgury. My only regret is that I should have done more due diligence in regard to radiation treatment. I’m 75 and cancer free so mission accomplished with a few bumps in the road. Good luck .
My treatment options are within the public system in Australia, it is a great system and we are very fortunate. But it is limited depending on the state and hospital as to available treatments. My hospital has offered me Prostatectomy, EBRT or HDR brachytherapy. I don’t have private health insurance. I do see the urologist privately, he has operating rights in both the public and private system.
I am three years out from successful SBRT (68 yr) and with BPH symptoms as you describe. Before radiation, I had the chance to get a TURP: my doc suggested it was a reasonable way forward as my cancer had not advanced and was treatable by radiation. I had ruled out RP which, as you describe, would have alleviated my urinary symptoms but jeopardized my sex life. As Tall Allen notes, the TURP is not without risks but performed by a top surgeon in a top institution or practice, those risks are small. I was hesitant about the TURP and decided to proceed with SBRT. The radiation was successful, and for that I’m very grateful. But I did continue to have persistent urinary problems for a couple of years after the procedure. Those symptoms have improved and (so far) can be managed with medication.
The question is: knowing what I know now, would I have given more serious consideration to the TURP before SBRT. The short answer is, yes. If your cancer is treatable by radiation (low, intermediate and low-volume), I’d do the TURP first. The issue being, once your prostate tissue is radiated, the TURP is a much riskier procedure because of healing/ scarring issues. Anyhow, that’s my two cents. Good luck!
I had similar urinary issues prior to my treatment. I was a 4+3 on biopsy and downgraded to a 3+4 on final pathology. I went with RP due to not wanting ADT and having a 61cc prostate. I am 100% leak free but I do use Trimix for ED. It’s really no big deal to use the Trimix in my opinion. But the best result of having the RP(for me) is that I can urinate freely and effortlessly like I’m 10 years old again. At least I got that benefit from this whole ordeal. Good luck on your decision and treatment.
I acknowledge that every person's PCa situation is different and that there are often several options to consider. Deciding on which one is the difficult task. You are in a good position of doing your own homework and not rushing a decision. This is good because you have time. PCa is very slow growing and it is incumbent that you make the correct decision.
Here is my experience.
First, I am under the care at Sunnybrook Hospital in Toronto of the world-renowned Dr. Laurence Klotz. I am so lucky. I was dx with Gl 3+3 in 2003 and Klotz recommended AS. Klotz was the global pioneer of AS and it was definitely the right thing for me.
My prostate was somewhat enlarged (54cc) so Klotz put me on Duststeride (Avodart), which shrunk my prostate by 1/3. However, Avodart masks your PSA by about a factor of 2x, so you should double your score when you receive it. I stayed on Avodart and AS from 2003 until 2018 when my PCa became aggressive, with the GL rising to 4+5!!!. In 6 months, my PSA rose from 4-5, to 18.6. No more Avodart and no more AS.
Klotz strongly recommended radiation + hormone treatment, and he referred me immediately to a radiation oncologist at Sunnybrook. Again, I am so lucky: my rad onc is quite exceptional.
I PERSONALLY WOULD NEVER CONSIDER RADICAL PROSTATECTOMY, unless for a specific reason. There is never a guarantee that RP will catch all of the cancer and microscopic cells could remain. That is equally true of radiation treatments. So we have to monitor, FOREVER, after whatever treatment we choose.
Unfortunately, my Gl 4+5 eliminated me from being considered for the TULSA-PRO procedure. Klotz was a very early supporter of TULSA and I certainly would have had it if I could. Klotz also is not a fan of RP unless for a specific reason. I have had three TURPs over the years, one just before we discovered my PCa became aggressive. So, this delayed any radiation for six months to allow healing.
The original strategy set out for me was 40 sessions of EBRT combined with 8 three-monthly (ADT) hormone injections (Zoladex). The ADT injections were designed to lower my testosterone (T) level to as close to Zero as possible in order to make the radiation treatments more effective. For the first month, I also took bicalutamide daily. I was scheduled for the rad sessions after the second Zoladex shot. Voila, by that time, my PSA was reduced to <0.02, or undetectable, and my T level to <0.4 (Canadian) or about 11-12 on the American scale, which is also considered undetectable. So the ADT injections worked.
Before starting treatment, I did considerable research of my own and learned that 25 rad sessions were just as beneficial as 40 and 6 three-monthly ADT injections were just as beneficial as 8. My rad onc concurred in both instances and that is what we did. It certainly pays to be as thoroughly informed as possible.
I had no problems with the 5 weeks, 5 days a week, of radiation treatments. The radiation machines are so much more advanced today with much greater pinpoint accuracy, which spares surrounding tissue.
However, I have experienced considerable Side Effects (SEs) from both the hormone injections and the radiation treatments. These include hot flashes (no wife sympathy), arthritic hands (both), (one) breast enlargement, shrunken gonads, lack of interest in sex, and fatigue! fatigue! fatigue!
If I had to do it over again, I would have a serious discussion with my rad onc to stop the ADT injections after 3 or 4. They did what they were supposed to do in terms of lowering my T level, and I am guessing that less hormone injections would have lessened both the intensity and longevity of my SEs.
I am now exactly two years out from my last rad session and 16 months since my last ADT shot. And I still suffer with these SEs, although they are slowly subsiding. It seems that every guy experiences different intensity and longevity of the SEs.
BUT ... I would gladly endure these SEs if it means that my PCa diagnosis is greatly improved. It is early days yet, but so far so good. Over the last six months, my T level has returned to its pre-hormone level (and hopefully going higher). A higher T level is reflected in a concomitant rising PSA score, and mine rose from <0.02 to 0.04, a double but still exceptionally low and quite understandable given the rising T.
I continue to have blood-work every three months and am closely watched by both the prostate onc and the radiation onc.
All of this long-winded blurb is to encourage you to consider strongly EBRT + brachy (if you do not have a TURP) plus ADT if it is needed to reduce your T level to make the EBRT more effective. The SEs are not pleasant, but the alternative (possible earlier death) is worse. I want to live well into my old age (I am 79) and I firmly believe that the course I am following is the correct one for me.
As I continue down this road with three-monthly monitoring, at some point I will seek a PSMA-PET scan to ensure that the PCa has not spread. But that is for another day.
I was diagnosed with G3+4 four years ago. I had a very large prostate and had been dealing with troublesome urinary symptoms for ten years or so. I visited nine Doctors (Uros, RO's and MO's), read books, attended support group meetings, etc. before making my decision. I came to the conclusion that radiation would likely make my urinary symptoms even worse. I had a successful RALP and used a highly skilled and experienced surgeon. I rarely even think about prostate cancer now except when I have to have my PSA checked. Whatever treatment you choose, be sure to use the most skilled and experienced practitioners you can find. Good luck.
I was in your boat 4 years ago. Knowing I did not want RP which as you mention would have been a kind of 2 for 1 surgery I opted for TURP followed several weeks later by Proton Beam Radiation. Here are my thoughts in retrospect. The TURP was highly successful for treating the BPH. It does, however, come with potential risks which for me included radiation prostatitis and cystitis. Tremendous amounts of scarring of tissue as others have mentioned, and in my case a lot of calcification of the prostate lining which my uro was very careful about lest he tear the lining.
I now believe that some of this was exacerbated by the radiation though the cancer is under control and PSA scores continue to remain very low. I went though 10 cystoscopes, all in hospital under general anesthesia as my doc knew he was going to have to do some procedures each time.
At about this point I was elevated to the teaching hospital in our state and the first thing the doc started discussing was options for urinary diversion surgeries. Not wanting to go that route I went back to my uro and asked if hyperbaric oxygen treatment (HBOT) might help.
He told me he had a couple of successes with patients and it was worth a try. I endured 30 sessions. Symptoms persisted. He did another cysto 6 months later and when I awoke I immediately noticed no catheter. He came in and told me all same scarring and calcification had disappeared and he did not do any procedure. I asked how he would explain this improvement and he said HBOT was the only answer.
Today I have minor and manageable stress incontinence otherwise all systems are good. Looking back I do understand that men would choose one procedure (RP) rather than TURP plus radiation but for me I still would have done same. I would, however, have waited 6 months instead of 6 weeks in between to help the healing process.
I have also been told that there may be a medication available that replicates speeding up the vascular system and speeding up the healing process an an alternative to HBOT. Hopefully you don’t need to go this route.
Good luck with your decision and let me know if you need any more details.
I had retention issues for so many years and had considered TURP but, after a T2c diagnosis at 63, had an RP now some 5 years ago (some G4+3)and now that awful retention is gone, and no ED , no incontenance, PSA<.02, I would likely skip the extended time dealing with TURP and thenRT and all the issues in your case and instead go get the RP done, just get a good surgeon with 1000+ procedures and its all good.
Thank you everyone for taking the time to reply to me. All your replies are much appreciated. I know we have all got to make this hard decision on treatment or no treatment, it’s very much an individual decision to make. But your answers are all extremely helpful in guiding my decision making process, along with my own research and the guidance of my treatment team.
I am so thankful to this site and the people who share on it, it makes the journey so much easier to know your not alone in this and many have walked this path before me. Unfortunately many more will walk this path after me, that why this site is so important.
My situation is somewhat like yours. Diagnosed with Gleason 7 (3+4) low volume cancer that appeared contained on the MP-MRI. I was going to go with FLA or SBRT but after my biopsy Decipher test showed high risk I hesitated for a bit. Talked to a radiologist and surgeon. Surprisingly both said I should have the surgery. I had suffered from chronic prostatitis for almost 30 years and had all the symptoms of that which unfortunately are similar to prostate cancer. One of those symptoms was weak urine stream and my radiologist said radiation would not make that any better, in fact it would probably make it worse. I'm not sure if it was because of the weak stream or the chronic prostatitis, but that is what he told me. My brother also had prostate cancer, but without stream issues, and had SBRT and is getting along fine. I'm not sure this helps but hopefully your radiologist and surgeon will be honest with you. After my surgery the final pathology showed Gleason 8 that had already escaped from the prostate evidenced by positive margins. I would not have known that if I had not had the surgery but perhaps the radiation would have also gone far enough outside to have zapped those cancer cells...who knows? Anyway, with no additional treatment my PSA is still undectectable going on a year now. I wish you the best of luck!!
Thank you Kevin1957. It is fantastic news that your PSA is still undetectable, I hope it remains this way for you. Both my surgeon and the radiation oncologist have been very honest and informative, which is fantastic. They have left the ball in my court, so to speak to make the decision. I will make a decision once the results are in on the PSMA scan. Then I will live with that decision, I hope my outcome will be the same as your good outcome. It so not just about quantity of life but quality of life as well.
I really thought, and this is what is making it hard as well, that I would be able to take my medication and stay on active surveillance but the surgeon and the radiation oncologists both agree that some sort of intervention is now required. They example my family history as well.
There are pro and cons from all treatment options.
Thank you very much for your reply I appreciate it.
My first few decisions were knee-jerk (but I'm still vertical on planet Earth 21 years later). I commend you for calmly exploring your options, and reaching out to ask questions. I wish you the best !
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