What is the longest time after Proton therapy without ED?

There isn't anyone with a long term view out there from proton? Short term publications are positive for most part, but looking for those that have the longer view (if any on the list).

PCRI video points from what I gather:
* If one needs cialis/viagra before PCa diagnosis, those have worst outcomes from proton as far as ED
* Most side effects show in first few years, but PCRI didn't say that from a publication, was an offhand remark so not sure.

Hi @bjroc, I'm tagging several members who have had proton beam therapy for prostate cancer like @jb2buckwater @slick64 @ken82 @dandl48 @rcs @waynen @wrig1jam @jim20403 @jimcinak and @gankster. Some had proton beam therapy months ago, others year ago and may be able to post their with erectile dysfunction (ED), whether they had ED or not. If yes, how long their period without ED were.

I know you're hoping for a simple answer, but I don't think there are ever simple answers with cancer. Experiences with side effects vary from person to person. It will also depend on if one has proton beam therapy alone or with other treatments, as well as erectile function pre treatment.

@bjroc, when did you have proton beam therapy? Do you experience ED-free periods?

Just being offered proton beam at Mayo, I have not had yet. I am aware it depends on things. Right now I am doing a two month shrink, then can select proton at Mayo or go outside and do Tulsa. We will see.

@bjroc I had my prostate cancer diagnosed in 2019 at Mayo MN where they gave me 1 Lutron shot...2 months later I started the Radiation 20 treatments near my home where equipment was the same and radiation oncologist was Mayo trained. My Urology problems.. ED.. were complicated by drinking water pollution at Camp Lejeune while in the Marine Corps decades earlier...the Viagra worked for a while prior to the cancer. . . But not since...other medications were tried to no avail. Good luck

Ken Larson
In the Woods
Ames, Iowa

My experience was no erectile disfunction... other than being 65... so it's not rock hard like when I was 32!

I was treated with proton beam in 2019 with 18 months of Lupron. Since then, I've had ED since then, but my be age issue. I haven't tried viagra, but still can have sex with help of my wife.

bjroc, I think as Colleen said the answer is not simple or definitive.
My background: At age 69, in late 2019 PCa diagnosis, PSA running ~8.3 (but should be doubled for long time finasteride use). Gleason score 4 + 3. I did five PBT (proton beam treatment) at Mayo Rochester Jan/Feb 2020. I was encouraged to do ADT - I hesitated and got one month shot, late followed by 3 month shot. Some urethra irritation with PBT. (FWIW: my PSA scores are staying in the >.10 or undetectable.

I would say that I had medium ED (erectile dysfunction) well before PBT treatment. Obviously during ADT and immediately following I had no erectile function (and no interest). Some months after the end of ADT and now I have some erectile function but insufficient for intercourse. But, I'm also age appropriate for ED and overweight.

If you search the prostate section of Mayo connect there are some of who have posted about receiving PBT and opting to not have ADT. They might be able to provide some perspective on ED over time.

I'll conclude that I've not seen anything in the literature or in comments here suggesting that ED is related to PBT. There are many factors that contribute to ED (testosterone levels, circulatory health, overall health, overweight (where fat converts some testosterone to estrogen), exercise, etc.
Hope that helps.

The only study I know of seems to indicate that your 6 month situation varies little from your 2 year levels, a slight decline. That seems in line with normal ageing. Hopefully we can extrapolate from that and hope that it is just age that drops that bone and not the treatment.

Even if someone came on here and said they were 10, 15 years out and functioning, it would be pretty meaningless. He just may be an outlier or just a liar. I don't see how a single case or two would assist your decision making.

I am only a month out but seriously good erections. At least as good as before and interestingly, my urine stream is much, much better. That was a bit of a surprise. Maybe that has also helped me in the wood department. I don't know but not complaining.

Thanks everyone for their inputs. If things workout here I will probably opt for Tulsa Pro though it is uncertain since they want to shrink my prostate size beforehand to get the heat level up as one lesion in the top back, and the shrinking may or may not work. I therefore have Mayo proton as a second choice, but it might happen if I don't get results with some shrinking using Dutasteride and Bicalutamide (Avodart and Casodex).

I had been on AS 2.5 years. During this years biopsy biopsy I was found to have a very tiny pair of bad biopsy lesions, this in addition to the original 3+3 lesion that again got a 3+3 on this biopsy. One very small new lesion is 3+4. The other says not enough tissue to fully grade the lesion, but it contains some 4 and since they don’t see 3 it is 4+4 but with a caveat listed that they can’t grade the lesion since not enough is present and it is a tiny lesion. So they all call it a Gleason 8, even though the biopsy report says not enough tissue to fully grade that one tiny lesion. Obviously I can't continue AS.

I don't like some aspects of opting for Tulsa with a Gleason 8, but it is a small lesion as is the other 3+4. Two tiny lesions. My PSMA shows no spread at all. Not sure I love Dutasteride and Bicalutamide, though exercise helps, and have to have a pelvis CT to see if it shrunk it a couple months.

Tulsa can always be repeated if something shows up later. Proton is spread over the entire prostate and not sure I love that idea. I don't think proton can be repeated. Tulsa less chance of ED, but sounds like many do ok on Proton. So we will see. It is 50/50 what will happen from here.

Thanks for the inputs.

bjroc,

I appreciate your post and I am curious for more details. What size was your prostate before your started your medications and do you know the size they are shooting for? Are you for sure going with Tulsa Pro......if so, who and where have you decided? I have read a lot about Dr Busch in GA. I believe he is cash pay only.