Low dose brachytherapy long term side effect risk

@havhav, choosing between surgery and brachytherapy is tough. You're right that it comes does to a "choice based on perceived risks", but also which possible side effects will be more tolerable for you and your husband.

@hodagwi @kcinthetropics @bens1 @rso may have some thoughts to share about their experiences with brachytherapy side effects. @jb2buckwater @dougs411 @dandl48 @web265 @vernonkent @waynen @maxvt may also be able to share how they made their treatment choices.

While we wait for others to chime in, I think you'll find this related discussion useful:
- Do you have urinary incontinence after prostatectomy & radiation? https://connect.mayoclinic.org/discussion/urinary-incontinence-1/

I'll try....but...everyone is different and it's a very personal decision...
diagnosed at gleason 3+4, DRE and MRI showed nothing outside of the prostate, then a full body bone scan was negative for anything there. So working off that information as my doctors basically said, in prostate cancer treatment you have three choices, "watch it" / "kill it" / "remove it". Then they both took "watch it" off the table as the gleason was too high.

Being young(ish, 59 at diagnosis) and otherwise pretty healthy, the surgeon recommended RP. I left that office and went to the radiation oncologist a couple weeks later. He felt, largely for the same reasons, that his option was the best option. That being 40 radiation treatments.

Asking both dr's directly "What would you do if it was you?" They recommended their own disciplines. They were both great guys, very experienced, sit and talk for an hour if you want, I just think they legitimately believed in their own disciplines. What's a guy to do?

I went for the RP for the personal reason that I just wanted the vile tissue removed. I think there was likely a visceral reaction to the "C" word and my brain went to "get it out". My wife felt the same way. Both doctors went down the same list of side effects after treatment with the radiation oncologist adding the " there is a slight chance that the radiation could give you another cancer"

The other factoid that played into it, being a contingency planner type, was what happens when / if it returns. Both doctors agreed that if the RP doesn't get it all, it's much easier to follow up with Salvage Radiation Therapy (SRT) as opposed to working in the other direction. I was told if the radiation treatment doesn't get it all and they have to go to a surgical option later, it's a VERY different VERY specialized surgery. Having said that now, after lurking here for some time, I'm not sure that would be the next step, more likely some sort of chemo unless / until a tumor showed itself somewhere then that would likely be irradiated. (just a guess I really haven't researched that much yet).

Biochemical recurrence came to fruition as after my surgery the surgical pathology report showed that even though the margins were clear (and a lymph node taken and tested for good measure) I had some Perineural and Lymphovascular invasion. The PSA started to sneak up and I went into SRT and hormone therapy (Orgovyx in my case)

I also had a PSMA PET CT scan (with radioactive dye of some sort) that was negative as well, and in retrospect, likely expected to be. I found out from the good folks here that there's only a small change of it finding anything with low PSA, if your PSA is below 0.2, there's only a 30% chance of finding anything even though your psa is on the rise.

Current status, still on the drug for now, PSA last tested at 0.014, no lasting effects from the radiation that I can tell, the only issues from the operation are ED related. I can get semi erect, (not good enough to be of any use to my wife, you just have to be open and get creative) and can get the occasional dry orgasm. Well that was a tad blunt...

Side effects of the ADT are hot flashes, which makes sleeping difficult and "lupron belly" even though I work out and run 8-10 miles a week, and of course, "shrinkage" there are other clinical possibilities, I'll let you look those up. 🙁

One thing I might suggest, if you decide that radiation is the way to go, I might consider some type of protection like Space Oar.

Best of luck to you!

Thank you so much. Even though we completely realize everyone has own situation and priorities, etc it was very helpful to read through your experiences. The initial choice seems very similar to our current situation and right now, we are leaning towards RP surgery over brachytherapy. Even though long term development of potential rectal and bladder urgency/inflammation issues aren’t common with brachytherapy, my husband really would like to avoid those and prefers to stick with the risks for ED and urine leakage issues related to surgery. Thank you also for your candor about your after effects - it is helpful especially as most information out there is so vague. And also thank you for the link on space oar. We had read a bit about that type of product. As we may need later radiation treatments even if we fully decide for surgery as first line treatment, it is good information to have. I’m very glad to hear your PSA is cooperating with your treatments 🙂 Thanks again

One thing, just to be clear. At least in my case, the salvage radiation was a much lesser dose than the original treatment radiation would have been as I understand it. The doctors did not recommend the space oar product for those treatments. I didn't get it.

Side effects of the SRT in order most noticeable to less, fatigue (this increased as the treatments went on..), some diarrhea (very infrequently) and what I can only describe "burning anus" so I guess rectal inflammation of some kind. All of it ended within a month of the end of treatments. So far, so good.

I have been following this conversation, but have been reluctant to contribute since the post is titled “Low dose brachytherapy long term side effect risk.” I have no experience with brachytherapy, but now that you seem to be leaning toward RP, I thought you may be interested in my experience. I am 64 and was diagnosed early last year with with similar Gleason and PSA scores as your husband’s and an MRI that indicated spread to the seminal vesicles and extra capsular extension. Although I had a hard time getting the doctors to talk about staging I was finally told I was T2b.
Having to choose between radiation and RP was almost incapacitating, since you are making a life changing decision. I decided I did not want the prolonged side effects of ADT that accompany radiation treatment and was leaning toward RP simply because it potentially offered a shorter path to recovery. That was confirmed when I finally had a chance to meet with the surgeon and the radiation oncologist. I felt like the oncologist couldn’t directly answer my specific concerns and he seemed a bit pessimistic about a favorable outcome despite prescribing very aggressive treatment. In contrast the surgeon was very confident about a favorable outcome. When I asked about the MRI showing possible spread outside the prostate, he brought up the scans and took measurements said the spread if any was minimal and still did not waiver in his confidence that he could provide a successful outcome. Urinary incontinence as a side effect was my primary concern. In my research I learned that membranous urethra length is a good predictor for regaining continence after RP (see link)
https://wjso.biomedcentral.com/articles/10.1186/s12957-018-1523-2. Anything above 12 is good. The surgeon said mine was 14. Ask your surgeon about this! Long story short I went with RP. The surgery and recovery went very well (having a catheter for a week is not fun but you can manage) I am a little over three months out from surgery now. Either I am lucky or my surgeon is great (or both) but I have had only two incidents involving incontinence, the first occurring soon after the catheter was taken out and the second about a week later. I had pads so there was no public humiliation.
The pathology report was better than the MRI suggested. No cancer anywhere outside the prostate. This includes 12 lymph nodes that were also removed. ED was not a major concern since I am not sexually active, but even that appears to be improving.
Over all I feel like I made the right choice and even if the pathology report had been less hopeful, I think I would still be grateful to have detailed information at a microscopic level that cannot be seen with any scan.
General fitness seems to be important to a good outcome. My surgeon seemed to be able to predict a good outcome by just looking at me. If you choose RP make sure you are exercising regularly, I am not athletic but I was walking about 3 miles a day or riding a bike about 10 miles and doing Kegels everyday for more than a month prior to surgery.
I wish you the very best as you navigate through this difficult time.
David

Thank you - the comment about making a choice being almost incapacitating sure hits home. We have been debating side effects, especially long term side effects, non-stop. We would love it if our RP outcome was as good as yours has been (!) but feels like it’s a bit Russian roulette whether any erectile function can return after RP surgery. Best odds I’ve seen is 50:50, worst more like 70% don’t return to functional level. Urinary function - thanks for the tip on membranous urethra length - we didn’t get that with the MRI report but will ask the surgeon. At this point, unless something else changes or maybe that membranous urethra length number is super low, we are planning for surgery. My husband is very averse to any risk of rectal complications as he has already had some issue with hemorrhoids (now treated) and really doesn’t want to risk any of the longer term recurrence of rectal issues years down the road after brachytherapy, even though those numbers are quite low. Also, between risking urgency issues and getting up multiple times a night to pee and urinating frequently throughout the day, etc that can be risk of brachytherapy long term, he would like to avoid that. We realize surgery might lead to long term urinary incontinence but hopefully that is less likely as he is younger than average, etc. But still, he figures he can manage long term leakage with better quality of life than frequent urgency issues 24 hrs a day. The erectile function side effect of surgery is way worse than brachytherapy though 🙁 Which he is very depressed about. He feels there is a gun to his head because of the cancer and he has to pick a treatment as his stage T2a and Gleason score (7 - 4+3) with a bulging prostate capsule where the mass is doesn’t leave him much choice. But so hard to risk losing all erectile function when that is something he has never had even the slightest hint of any issues with, let alone the changes to orgasm experiences, etc that will occur. We are quite sexually active so this will be a major game changer for him 😔. Cancer really doesn’t leave a lot of room for wishful thinking though - the primary thing is to do our best to get rid of it or kill it off right from the start. At least that’s the stage we are at now. If recurrence occurs or surgical margins are positive then we deal with that one step at a time when it happens.

I had Brachytherapy 46 days ago. I was told the side effects would last no more than a couple weeks. I am still experiencing painful, frequent and difficult urination. I just saw the doctor and he said that this is very abnormal but just wants me to wait it out. Will i eventually get better or what can be done if i dont. I’ve had two rounds of steroids, quit drinking alcohol or coffee at the doctors recommendation. Right now i am miserable. My urge to go starts with pain in my scrotum and then waiting 45 -120 second to start urinating follow by pain in the penis and a difficult flow of 250-300 cc’s. What should i do?

@hymana, I can imagine continued side effects after brachytherapy are concerning you. You're asking good questions. To help you connect with other men who have had similar experiences, I moved your post to this existing discussion:
- Low dose brachytherapy long term side effect risk: https://connect.mayoclinic.org/discussion/low-dose-brachytherapy-long-term-side-effect-risk/

@hodagwi @kcinthetropics @bens1 @havhav @web265 may have some thoughts to share about their experiences with brachytherapy side effects and how to manage urination and pain.

So as I understand it these brachytherapy side effects may not go away? That’s a shocker. I was under the impression they were only temporary. Almost 7 weeks now. I’d guess I’m 60% of normal before surgery. Has anyone ever gone this long and eventually have the pain, frequency and difficulty go away? And if not is there any follow up - BTW I’m 74.

@hymana, side effects of brachytherapy are often temporary. Brachytherapy for prostate cancer can cause some long term side effects such as passing urine more often and difficulty getting an erection. Everyone is different and the side effects vary from person to person. You may not have all of the effects mentioned.