Concerns about Salvage Radiation

[SooHwa99]

I start radiation January 6th.

I think I can get the water/bladder thing down, but I have concerns about the other end.

Did you do enemas before each session and is it OK to do a daily enema? I am not particularly regular and would like to be in the best position to avoid damaging that area.

Also, I had surgery April 1st and am still not fully continent. I only use one thin pad during the day and a depends at night, mainly to be on the safe side.

My Oncologist shared some studies that there can still be some healing even with radiation therapy.

How many of you went into radiation still somewhat incontinent? Did it ever improve after radiation or were you left at the incontinence level you were at or did it get worse?

I can kind of deal where I am at now and the few dribbles are not worth any further procedures at this point.

How many of you developed structures after radiation? The tech met a bit of resistance at the anatomists when he catheterized me for the simulation.

Feeling worried of course...

Thanks.

[Murph256]

My incontinence had cleared up almost completely about 9 months after surgery. However it started up again with salvage radiation, both during the day and at night. It began about one months into SRT and it is now beginning to improve again 6 months after my SRT ended.

[SooHwa99 in reply to Murph256]

Thanks that is encouraging to hear. Thank you for your response.

[WayneSC]

I did lose some ground during radiation but gained it back after a few months. Still have minor incontinence and have a consultation in several weeks to have a sling procedure. The surgeons threshold for the procedure is 5 or less pads daily and apparently they have excellent success

[WayneSC]

I did not do a daily enema but rather stayed on high fiber diet for good bowel movements. The technician will be able to see daily if you are within specs. Pro Tip—-go to your appointment 1:15 early and drink your liquid while there unless you are very close to the medical center.

[Mollyjones in reply to WayneSC]

Going early, drinking the water just before radiotherapy worked well for my better half. He found it difficult to hold the water in, but he managed it. His water works were causing anxiety straight after the treatment ended, but after three weeks, already he is seeking normal urination habits starting to return. We still organise our day trips around toilets but he has maintained control, even if he had to find a tree instead of a toilet on the odd occasion. I recommend that people get a printed card saying you are a hospital patient, I understand that shop staff recognise the urgency when they see one. My fella didn’t want to get one, but uses his hospital appointment card occasionally and it always gets him straight to the loo.

Good luck all. Hang in there.

[SooHwa99 in reply to Mollyjones]

How do you go about getting such a card and what should it say one it? That is a really good idea. I always worry and have a bit of anxiety about that. Many times I have to use the lady's room because someone is in the Men's room and we absolutely CANNOT WAIT... It sure would be helpful if anyone gave me a hard time. I am sure it is weird seeing a 50+ year olds have to pee with such urgency and frequency!

[Mollyjones in reply to SooHwa99]

Here is one I saw on Amazon. You could ask your doctor or make your own. amazon.co.uk/Medical-Restro...

[Tall_Allen]

Ask your doctor about enemas. I was instructed not to do them because they increase bowel motility. I was told to just have a BM before each treatment.

Unfortunately, radiation often makes existing incontinence worse. If you want to give it more time to heal, you can take ADT to hold the cancer in check for a few more months. If you are prone to scar tissue formation, strictures may arise. If you can't pee, go to the ER to get catheterized.

[Neathuh1]

I had 37 radiation sessions, enemas were never suggested. At that time I still wore pads for fairly regular dribbling but 6 years out that is no longer necessary. I occasionally pee blood due to scarring of the bladder. Scary the first few times that happened but I’ve been assured it’s nothing to be concerned about although once a guy standing at the urinal next to me glanced over and went nuts. Funny that me, the guy with metastatic cancer, had to reassure the healthy younger man. I bet he told everyone he knew about his experience 😂.

[SooHwa99 in reply to Neathuh1]

Thanks so much. That is very reassuring. I greatly appreciate your respons. I hope the cancer is under good control.

[GARunner1]

Had SRT 2 years after RP and had only squirts while exercising or acts involving frequent bending down. Now almost 3 years later squirts are more frequent, but not enough to need pads. I was also advised not to do enemas. I did take a reduced dose of Metamucil that seemed to clear the bowels adequately. Best of luck!

[SooHwa99 in reply to GARunner1]

Thank very kindly for the response and info. Greatly appreciate it.

[Mikeski]

I was told, and took, Miralax daily starting a week before my RT. Worked like a charm.