EBRT Radiation Completed Now What

Graduated today from my 25 Sessions of EBRT post Brachytherapy which started in jan this has been a long difficult journey for me.

As most who have seen my previous post ive had a extreme difficulty time with especially with urinary side effect issues , weak stream , drip drips ,difficulty urinating throughout this process, now that i have completed my treatment , I would like to hear from thouse hwo have completed there treatment and can let me know how there recovery and post EBRT went.

While i understand everyone is different . I'd like to get an idea of what to expect time wise as how long it took before you started to feel better and your side effects especially the urinarty functions started to return to normal.

Thnaks to all who have helped me deal with this journey and my pursuti of answers ill be around to help anyojne who I can ...

Thanks in advance for anyone who replies here.


John

I had my brachytherapy on Feb1st - two weeks after my EBRT finished.

I experienced proctitis as a result of eating hot Mexican food a few days after the EBRT had ended. I was given Proctol and the problem quickly resolved itself.

The one big side effect after the brachytherapy (day surgery) was a burning feeling when urinating. Pyridium isn't available in Canada so I had to hope that this nasty side effect wouldn't last too long. Fortunately, this resolved itself about 27 hours after getting home.

By the end of February and most of March I was experiencing a slow start-stop-start-stop flow of urine especially at night. I was also getting up every 2 hours.

Sometimes the urine flow is good now but mostly it is still inferior to what I remember last year before I was diagnosed.

My prostate size is about 30cc and I had no issues beforehand.

You should see improvement in a few weeks. You have something like a 3D sunburn in there, so the tissues are pretty angry right now.

One thing to keep in mind about this forum is why anyone visits here at all. Usually it is seeking help, either making treatment choices, or dealing with side effects. The ones with a trouble-free experience don't come here, or don't stay here. There are a few of us who stay to help. In my case largely because I was so appreciative of those before me who helped me through some very dark times.

Having said that, for my high risk case I had external beam therapy as my primary treatment, no brachytherapy. My urinary urgency became quite strong toward the end of my 44 sessions, having to get up seven or eight times at night. The flow wasn't strong, and it did burn somewhat. That cleared up over the next 4-6 weeks or so, settling at around twice a night get-ups for months. After a year or so it was once a night.

Finally, after a couple of years I got back to normal. No incontinence at all. No night time bathroom trips. No particular urinary urgency. To this day, sometimes urination has a slight burning sensation, but that may be normal and I don't even remember what pre-radiation was really like anymore.

Talk to your docs about the urinary issues. They will know about the risk of that for the treatment you received, and they should be able to provide some relief. My RO was always very interested in any side effects during treatment, since they do happen and the docs have ways to help. Don't suffer in silence!

I'll share one other comment at the risk of again attracting the forum experts' ire (you know who you are, please power down your phaser banks). This is only my experience, and no recommendation whatsoever. In fact, you should stop reading right here. What I'm saying is useless, wrong, and of no value whatsoever (enough disclaimer?) I'm mentioning this in the context of a question about severe urinary issues after combination RT. Directly related.

My EBRT (general term for external beam radiotherapy) was by IGRT (image-guided RT) by IMRT (intensity modulated RT), tracked with implanted markers for accurate alignment, to 79.2 Gy. To be clear, in 2013, five years ago, my RO at Vanderbilt was not in favor of combining brachy + IGRT. I pushed for it, mostly due to the impassioned encouragement from people on this very forum. However, IGRT with ADT was a standard, accepted treatment choice at the time, though some were adding brachy back then.

However, for reasons I came to accept, including the my RO's specific concerns about the risk of urinary issues, I went with IGRT alone (with ADT). Vanderbilt is a regional referral center for many disciplines, so they receive cases that have serious complications from treatment elsewhere. At that time, they did not think the possible increased cancer control with brachy added was worth the risk of severe urinary issues as they had seen in their clinical experience.

Today, you'll find many who have no unusually troublesome side effects from the triple play approach, and are also enjoying excellent PSA control. It does work well, as shown by studies that have been linked here by others in the past. Adding brachy may also enable a shorter sentence on ADT, which is a Very Good Thing.

In summary, the triple play works great, you should have very good long term PSA control. Some do experience urinary side effects like you're describing. Worse than other treatments? Dunno. Maybe, maybe not. But in any case, do talk to your doctor about them, there should be help. And it should diminish pretty rapidly after the radiation is over.

I had IMRT last summer as salvage therapy following RRP. 35 treatments. The treatments were a breeze for me, but they have brought back minor incontinence that remains 11 months later. The incontinence did not begin until several months after conclusion of the RT. After surgery I had problems with urinary retention, due to scarring at the bladder neck, and I was concerned that the radiation would exacerbate that. But it didn't. No retention, just leaking.

Redwing57 said...

My EBRT (general term for external beam radiotherapy) was by IGRT (image-guided RT) by IMRT (intensity modulated RT), tracked with implanted markers for accurate alignment, to 79.2 Gy. To be clear, in 2013, five years ago, my RO at Vanderbilt was not in favor of combining brachy + IGRT. I pushed for it, mostly due to the impassioned encouragement from people on this very forum. However, IGRT with ADT was a standard, accepted treatment choice at the time, though some were adding brachy back then.

However, for reasons I came to accept, including the my RO's specific concerns about the risk of urinary issues, I went with IGRT alone (with ADT). Vanderbilt is a regional referral center for many disciplines, so they receive cases that have serious complications from treatment elsewhere. At that time, they did not think the possible increased cancer control with brachy added was worth the risk of severe urinary issues as they had seen in their clinical experience.

Today, you'll find many who have no unusually troublesome side effects from the triple play approach, and are also enjoying excellent PSA control. It does work well, as shown by studies that have been linked here by others in the past. Adding brachy may also enable a shorter sentence on ADT, which is a Very Good Thing.

In summary, the triple play works great, you should have very good long term PSA control. Some do experience urinary side effects like you're describing. Worse than other treatments? Dunno. Maybe, maybe not. But in any case, do talk to your doctor about them, there should be help. And it should diminish pretty rapidly after the radiation is over.

Redwing - I don't know if you saw my post from last Friday, but I want to do triple play but I've got a caution flag being raised / suggested based on urine retention (not flow). If you don't mind, what were the urinary issues or risks that were present when you opted to skip the brachy boost?

Redwing57 said...
our RO is who you should trust, not me, nor any other random guys on this forum even if they come across as authoritative. This forum is good for giving you some questions to discuss with your docs, some angles you may not have considered. But no one here is a doctor.]

Best comment in months.

Update …. Went to see my RO post RT and he said I was doing well , while I complained about my persistent urinary issues ..... he did a Prostate volume test and said that my prostate was still a bit inflamed probably from the radiation, and since I was complaining I may have urinary retention while he was in there he also checked my bladder with ultrasound.

To my surprise he said my bladder was empty and showed me the photos ,I have to admit I thought I wa s always full he also said. That he thinks the urges maybe coming from the SpaceOr pushing my prostate into my bladder causing the constant have to go feeling, and me going and not much coming as im not drinking alot he thinks my bladder is mostly empty so I may take a day here and drink more water than I am and see if I pee more… while it was good I still worry (why not) …. last two days I actually felt pretty good … then today came and back to urges about every 30 -345 minutes

I keep reminding myself im still only 4 days out from completing 25 days of radiation and 6 mo post BRachy. So I guess I still have some healing to do down there, just hope it happens sooner than later... casue this sucks sometimes. feeling like you have to pee standing there and weak and little flow is frustration not to mention I have little patience .. So while I understand that is all behind me I want to feel my normal again so I gue4ss I need to be patient … and a big thank you to all who have followed my plight.

InTheShop said...
It can take a few months for things to settle down after RT. Drink lots of water and get use to going more often.

Andrew

there's your answer John.


Bite the bullet. Drink up buddy. If you retain it....you'll know it. there'll be no guessin this or that. until that happens....your empty. stay "all or nothin".....careful of in between man...it messes with ya head

You're rounded third...headin' for home

InTheShop said...
It can take a few months for things to settle down after RT. Drink lots of water and get use to going more often.

Andrew

. . . and for some of us, just a bit longer. I did not have feelings of retention, but I did have some discomfort upon urination, reluctant starting, urgency and frequency. . . which in my case lasted (off and on) for most of a year. Fortunately, my issues were not constant, nor were they all there at the same time.

Do give it time. Your internals have been treated like a Pop-Tart in a microwave. Things settle down, but we all heal at different rates. That your doc has tested you for retention and found things OK is a good thing. Now give all the irritation some time. If your issues are related to the SpaceOAR gel, then over time, as the gel is absorbed into your body, things will return to normal.

JohnMorales said...


and to add insult to injury yesterday I was checking the grill as I thought I heard a leaking sound and when I looked the tank caught fire getting me on my face and arms fortunately it did blow up and the burns are manageable not to mention I got a free shave as it burned all my hair off....

As if you(all of us) didn't have enough going on. Glad you survived. That could have been disastrous.