ED after SBRT?

[LBRV711]

Hi All,

I am still debating AS vs SBRT at this time, although My urologist and RO plus NY Proton Center are telling me I should move forward with treatment. My urologist put me on Cialis to help with a bit of an enlarged prostate and slower urinary flow. It seems to have helped. I saw on a Prostate Cancer Research Institute youtube video that they often prescribe Cialis before during and after treatment as they feel it may help prevent erectile dysfunction down the road. I mentioned it to my urologist, and he wasn’t very encouraging about my future erections long term after sbrt. Is that really the case? I didn’t believe that based on men on this site and also some books and articles I read. I know there is a possibility I may get ED that will not respond to ED meds, but I believed the odds were slightly more in my favor that I may be OK in that department. Can anyone shed some light on this?

Thank you.

[Tall_Allen]

The average man who is fully potent has a 35% chance of remaining potent post-nerve-sparing prostatectomy. Erections are seldom as good. There is also high risk of size loss and climacturia.

The same man has about a 70% chance of remaining fully potent post SBRT or HDR-BT monotherapy. ED meds may be protective - I took for 9 months..

[LBRV711 in reply to Tall_Allen]

Once again, TA. I can’t thank you enough for your quick response. You confirmed what I thought I knew. I know it still may be a problem, but at least the odds seem better than the urologist made it sound.

[Tall_Allen in reply to LBRV711]

It's why I chose SBRT. Thank God, I've had no erectile problems. A urologist just would have no idea.

[LBRV711 in reply to Tall_Allen]

I’m starting to understand my urologist is an OK guy, but quite flawed like the rest of us. By any chance, do you have any detailed studies/comparisons specific to SBRT vs Proton treatment? I belive outcomes are the same, but the guy at NY Proton Center who of course is selling his brand was very convincing about the protons not traveling through the rest of the body and potentially damaging other healthy tissue or organs. My thought was to do SBRT because at least it tracks the markers in real time where as proton treatment does not. But the radiation does continue through the body. I guess I just want the latest and greatest like everyone else. I’m trying to find recent comparisons, but not finding much.

[Tall_Allen in reply to LBRV711]

The Bragg peak is, IMO, a silly argument. What matters to the patient is not some theoretical physics argument, but the actual toxicity he experiences from radiation to neighboring organs (bladder and rectum) and whether sexual function is preserved. In all of those, proton treatment is no different from X-rays, based on trials in different patient groups (see the table at the end):

prostatecancer.news/2016/08...

Of course, the only way to know with certainty if it is inferior or superior is to have a randomized trial. But no proton center has been willing to put their money where their mouth is (neither would I if I had just spent tens of millions of dollars on a proton center).

[EJC61]

I haven’t noticed any differences before or after IMRT which is similar to SBRT with the exception of more sessions. I think what gets lost a bit, at least it was for me, is that healthy tissue does heal itself. I don’t think the radiation therapy is meant to hit many areas randomly or miss the target. That may have been true in the old days. That made it easier for me to choose radiation over surgery. It also helped me pass on Proton.. That and my insurance wouldn’t cover Proton.

[LBRV711 in reply to EJC61]

Thank you again for your reply. Yes, I was leaning toward proton due to the whole thing about the radiation stopping at the target, but the device doesn’t track the prostate in real time like the SBRT at NYU Langone does. So I’m feeling like it’s a wash. At NY Proton Center, they said they allow a 3% overage of treatment to allow for any type of movement. The main guy there, Dr. Hassan said they haven’t at any reoccurrence cases since they started, but they have only been open for about 4 years. Still sounds like a good record so far. Every day I think of something else to worry about with this whole situation. Not leaving my brain enough time to just rest and appreciate my blessings. Working on that part of the equation now.

Thank you again. Your help is so greatly appreciated.

[fluffyfur in reply to LBRV711]

The prep for each radiation session is equally as important as the equipment. Some centers seem lax on this, but that would be a priority for me. Choose a center that is meticulous in that regard.

[LBRV711 in reply to fluffyfur]

I know they are making molds for my legs, doing scans and fiducial markers, and they want to do the space oar as well at the same time as the markers. They seem great, but I have nothing to compare it to.

[LBRV711 in reply to fluffyfur]

and thank you for your reply. Means a lot.

[Hidden]

I had the high dose IMRT (27 sessions) as opposed to the 44 sessions that I've read other men having. I was potent before radiation and had only a 4 month shot of Lupron. That wore of in about 6 months and my testosterone came back strong and I had no problems getting erections but using Viagra makes it so much better. I've pointed out on here before that they cooked my seminal vesicles along with the prostate so no pre-cum and no semen during orgasm.

[LBRV711 in reply to Hidden]

Thank you so much for your feedback. It’s been weighing on my mind with all the other emotions. So hearing good outcomes certainly helps. I’m grateful for your reply.

[LBRV711 in reply to Hidden]

and grateful that Viagra may be an option…

[Cdubu]

After many month of research like you I narrowed it down to the same two options. I went with the MRI guided radiation at MSKCC with Dr Zelefsky (who is now at NYU) and I'm glad I did as he told me my prostate moved 5mm during the treatment. No serious side effects and after a few months pretty trivial colon and urinary effects. They typically prescribe a 20% dose of viagra daily to maintain blood flow. I'm almost a year out and sexual functioning is above baseline with th viagra and about as before without. I'm 71 years old.

I also had the genetic test Dr Kishan uses to help predict urinary side effects, I don't remember the name but it seemed accurate for me as I was rated moderate low risk and was very concerned as my urinary function was not great.

[LBRV711 in reply to Cdubu]

Thank you for sharing your story. It sounds like you’re doing very well and appreciate the education. 20% Viagra dose sounds interesting. Happy things look for you.

[NotDFL]

Remember that proton therapy takes many more sessions than SBRT and is, consequently, way more expensive to the 'system' but more lucrative to the practitioner.

[LBRV711 in reply to NotDFL]

I’m leaning toward SBRT at NYU Langone, but NY Proton Center did say they are now doing five sessions at much higher dose, but insurance is a crapshoot. He said $60,000 if they don’t pay. Thanks for your reply. Hope you’re doing well.

[Mike404]

I’m a year out from SBRT and no ED or other side effects. I believe the MRI guidance matters a lot. The Bragg Peak with protons didn’t impress me as much, plus insurance fully covered SBRT. Couldn’t be happier.

[LBRV711 in reply to Mike404]

Thank you. Appreciate your reply and happy you’re doing well after one year out! Hope I have a similar story to tell next year.

[WilsonPickett]

I had five treatments of MRI guided SBRT at Sloan Kettering approximately 22 months ago. I never lost my ability to have an erection, although after the fifth treatment I was uncomfortable enough that I wasn’t interested, but that only lasted for a few weeks. Although my erections are the erections of a 67-year-old man, they are erections nonetheless.

One other word of advice, I don’t fool around with second rate physicians. Go to the best, even if you have to travel to get there. And make sure you get a second opinion.

Hope this helps. Good luck.

[LBRV711 in reply to WilsonPickett]

Thank you! I live on Long Island and can considered going to MSK. Ended up liking NYU Langone where Dr. Jonathan Haas has been doing the “Cyberknife” SBRT for years. Very well know by everyone on Long Island with great reputation. NY Proton Center was another place I went to. Beautiful facility. But felt good at NYU Langone. May visit MSK, but not sure if I need to do that at this point.

[WilsonPickett]

Michael Zelefksy was my oncologist. I was happy with him. He just moved to NYU. In NYC (which is all I know) MSK Sean McBride appears to be the man and Zelefksy at NYU Langone NYC. I think it comes down to where you feel the most comfortable.

[cybertreated2019]

I am almost five years out from SBRT at age 61 for favorable intermediate PC. I took low dose cialysis for a moth before and nearly a year after. No erectile issues. It was a very good choice for me. Best to you.

[LBRV711 in reply to cybertreated2019]

So glad to hear that for me and for you. Just curious, do you know what dose the Cialis was? My urologist gave me a low dose of 5 mg for my enlarged prostate to help with urinary flow, although I don’t think it’s so bad. Wondering if that is the right dosage to take. Thank you for your reply.

[cybertreated2019 in reply to LBRV711]

I took 5 during treatment but dropped back to 2.5 after. Hate to say this, but higher dose just gave me too many erections.

[LBRV711 in reply to cybertreated2019]

Ha. Thx for the laugh. Needed that. Too many is presently not my concern for when I’m post treatment, but I get it.