Hello everyone, I've been visiting this site and others trying to figure out what treatment I want,
I was diagnosed on 2/28/23 with 3 positive cores. one was 3+3 the other two 3+4
I'm 55, in great shape, very active and have no sexual health issues what so ever.
Here's where I'm confused, I've met with Dr. Lau from City of Hope, who by all accounts, is a fantastic surgeon with over 3000 under his belt. He obviously thinks surgery will be my best outcome.
I've met with Dr. Kishan from UCLA, who thinks SBRT would be a great treatment choice.
(side note my insurance won't cover SpaceOAR)
Dr. Kishan did tell me that he wasn't against me going the surgery route, which I appreciated his honesty.
So here's my dilemma, gong with RALP, gonna have urinary incontinent issues that, more than likely will subside after time. ED will be immediate and function could come back to current standards, within 12-24 months, greatly dependent on the surgeon and how well he can spare the nerves. Other concerns with penis shortening and curvature aren't hugely concerning to me.
With SBRT the urinary side effects seem to be back at baseline within 12 weeks
ED will not be immediate but will come, and about 50% will have ED at 5 years after treatment.
But my biggest concern is having long term toxicity rectal side effects. Dr' Kishan says they have data for about 12 years, my concern is, could this get worse after 15-20+ yrs?
If I was 70+ I wouldn't hesitate to get SBRT, knowing that for at least 12 years I'm probably good.
I haven't been able to find any longer term studies or anyone who has had SBRT maybe 15-20 years ago. I know I'm overthinking all this, but I have too. I need to get this right and make the best decision for me. My main goals are to get rid oof the cancer, but preserving my sexual health is right up there.
Appreciate any insight and thoughts.
Thank you for your time
Jef
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MauiJef
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I had SBRT 13 years ago. Both will cure you. It comes down to side effects you are willing to live with.
With surgery: 20% have permanent incontinence, and only 35% of previously potent men have no ED. Even without complete ED, very few ever get back to baseline erectile function:
With radiation: incontinence is rarely seen. ED occurs in about 30% of previously potent men - less in younger men (I had no ED). I also protected my penile vasculature with 9 months of daily ED meds. You have misinterpreted the long-term ED rates - ED occurs naturally with age, and most men getting radiation historically have been older:
Late term rectal side effects are rare - about 3% grade 2+ (This is why some insurance won't cover SpaceOAR - it is a cure in search of a disease). Kishan uses Viewray MRIdian anyway, so rectal radiation is minimal.
IMO you are thinking backwards about age. Men who have incontinence and ED during their prime years suffer more.
TA thank you for the response, glad you're all good.....I guess what's frustrating for me is you can find studies that show all different results from RP surgery like this one from Johns Hopkins, I do realize everyone is different and highly dependent on the surgeon
I guess it's like going to vegas, it's a gamble either way. Glad you feel rectal side effects are rare with SBRT, that's a huge concern. As far as you think I'm thinking backwards about age, I may have not expressed myself well, I agree with you that ED and incontinence would be worse during my prime years, that's why SBRT now doesn't concern me as I feel it would be preferred at my age, my concern is it having late toxicity effects (esp rectal) 15-20 yrs down the road I wouldn't want, whereas RP I wouldn't have that issue. I'm sure I'm over analyzing everything, but I just want to make the best decision that I can....
I'm going to see a medical oncologist at City of Hope next and after that will decide on my treatment plan....
No, it's not like Vegas. The post-prostatectomy erectile function is much worse. Only 35% of previously potent men retain full erectile function after surgery.
Thks for your input. Dr. Kishan told me himself they just don’t know the long term toxicity as they on,y have data for about 12 yrs. Never once did he say nothing shows up after 2 years , but maybe you know more then him
I didn't say that nothing shows up after 2 years. I said "Totally new side effects never appear 15-20 years later if they didn't appear earlier (within 2 years post RT)" With late term rectal side effects at about 2%, that is your limit.
I had a boatload of radiation, IMRT, compared to what your talking about and no ED and no space oar. I was diagnosed in 2019 at 56 with more advanced disease. Still active and doing well unfortunately back on ADT. RP wasn't an option for me and based on what I know now I am pretty glad it wasn't. That said we don't hear much on these forums from men with successful RPs.
Thank you, I have talked with quite a few people who had RP and I’d say half are doing well and the other half wish they never had it. I’m sure the surgeon plays a big role, but there’s no guarantees….
I agree about surgeons and not sure if the new Da Vinci robotic surgery improved odds or not. I am definitely not insured for any surgeons I would have considered and if not for this forum my not being at a center of excellence would be more concerning.
I am two years post RP, had an amazing surgeon with a lot of experience. I was only 49 years old and I had the same concerns as the OP and luckily I so far got the trifecta. I hate to even say it as I am afraid it will jinx me. So far PSA has been undetectable at less than .007. I was continent the moment the catheter was removed and had sex the same day (probably should not have but wife wanted to see if everything worked). Surgeon did start me on ciallis the day after surgery to maintain penile health. I still take ciallis daily and viagra sometimes. My wife says it works better than before surgery, and without the mess, Hope this helps, if you have questions feel free to reach out. Good luck
Hannity, Glad to hear you hit the trifecta!!! That's great. It's also nice to see someone who's had RP have great results, seems like this board is very anti RP. I'm still not sure which way I'll be going.
Half mast never, full erection every time and no urinary leakage. Dr. Edward Schaefer, from Northwesrern in Chicago, contacts me every 6 months to review everything. He has been amazing to work with. So thankful.
I was older (73) when diagnosed and after discussions with my Urologist and my RO, I decided that the probability of late rectal disease was small enough that I chose not to suffer the trauma of surgery and recovery. My brother-in-law was younger (55) when diagnosed and chose surgery. He is 66 now and has a very active life but laments that his "intimate" life was ended by the surgery. He still complains of leakage when he sneezes. I have resigned myself to the fact that PCa is a lifelong disease and that, once treated, you can never be free of the possibility of reoccurrence and annoyance of side effects. I'm 9 months past my 43 sessions of IMRT. Except for the same urinary problems that I had before the radiation, life is back to normal. I read that surgery and radiation have statistically the same "curative" rate and men pick their "poison" at roughly half for radiation and half for surgery. MauiJef...I wish you well in your choice of treatment. No one on this site can give you a definitive answer for your personal circumstance. You have good doctors on your team so with either choice you can expect the best outcome possible.
If you haven't already, see responses (including mine) in the thread "ADT before surgery?" on this forum. And if you're worried about rectal side effects from radiation, may I suggest you look into proton beam therapy (a type of EBRT). One of proton's claims to fame is (ideally) no "exit dose" beyond the target area, i.e., the proton beam stops at its target, where a photon beam (all other forms of EBRT) keeps on going through the tissues beyond the target. This is where rectal damage occurs.
I just visited with a well known oncologist doing SBRT at NYU Langone Health. He stated that although proton therapy stops at the target, not passing through the body, it does not account for movement live time as the cyberknife does. So there can be some misses of the target and hitting spots other than the target. So they use a balloon in the rectum which pushes a portion of the prostate into the rectum while it holds it in place to stop it from moving. He stated recent research showing problems with rectum due to this as well. Also SBRT is five sessions within ten days, which is very appealing. Still need targets implanted in prostate pre treatment to guide the machine, as well as the space oar.
Going to NY Proton Center soon for a consult with their top guy. I’m sure they will refute much of what I was told at NYU Langone Health. I have learned from everyone on this site to slow down and do my homework. So that’s what I’m doing.
My compliments for taking time to examine options and study research before making a decision. Unfortunately, you are still likely to face frustrating uncertainty when you make your decision. Along the road, I favored each of the 3 common surgical and radiation approaches., multiple times. There is no hurry.
I had several 3+4 cores and was in my mid 60s when I had RALP. I maintained urinary and sexual function. Lucky. My PSA remains undetectable nearly 3 years later.
To your key point of becoming cancer free, IMHO, nothing else is quite as reassuring (or not) as having a pathologist examining all the tissue, including some lymph nodes. Also, your PSA should be undetectable with your first test.
If there are indications of metastasis, the surgical choice may offer more in the way of subsequent treatments. In my case, pre-surgery, no MRI or biopsy core (42 total) identified the extraprostatic (extracapsular) extension. Fortunately, the cancer did not extend beyond the surgical margin.
You responded to my recent post and I am grateful. Seeing yours now, I figured I would reply. I met with a well know radiation oncologist today at NYU Langone Health Perlmutter Cancer Center. He did give me a list of 50 patients that volunteered to be contacted to discuss their experience with SBRT. Some of them are about 15 yrs out, so I will reach out to them as well as some of the more recent patients. I’m assuming they only give the names of the successful stories, but can’t hurt to hear a few good ones from the patients of the oncologist I may use. Will keep you posted.
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First post RALP followup with Urologist - mixed feelings
Likelihood of post-RP radiation? 
Continued fatigue and swollen extremities post-radiation and with ADT
Potency-Sparing Radiation
Radiation commencing.
