Possible biochemical recurrence.

I have my planning CT scan imminently. I also have some concerns.

They seem very interested in my gut health, which is actually my Achilles heel. They haven't said very much, but I sense they think that my gut may be a problem after the EBRT. More of a problem anyway. An acquaintance of mine said that his onco kept schtum about gut toxicity, but it took him five years before he could eat bread again.

I have read a little about rectal retractors for post-RP EBRT. They are supposed to help somewhat. Has anyone here experience?

The full bladder thing is quite a challenge. The technique suggested to me was to drink 650ml shortly beforehand but I found it better to drink small amounts regularly leading up to the session and to keep well hydradet on the night before and leading up to RT. Keeping the process graduated seemed to work better than taking a huge drink at a set interval beforehand and hoping that the RT would be exactly on time.

The least controllable approach happened on mornings where I did some vigorous exercise early on, lost a fair amount of sweat and then struggled to work out how much to drink to achieve the right bladder level.

Being over-full when you arrive for RT is excruciating but in that situation it's possible to go to the toilet and release a small amount while not dropping the bladder content down too much.

I had 45 fractions which did give me time to improve my technique, slightly. I didn't find that the bladder challenge worsened towards the end of the treatment although there was a certain amount of accumulated tiredness after a couple of months of RT.

Jules

I'm probably not the best person to ask that question of. At 75 I and with naturally declining erectile function that was one issue that didn't concern me too much. From other posts in this forum though, it looks as though sildenafil is ok. Given you're not having HT after your RT you shouldn't have issues.

Jules

I didn't find any major side effects until the last week or so, though I found I ran out of steam earlier in the evening than normal. Resolved by going to bed earlier.

Your oncologist is obviously keen not to disrupt the treatment sequence, I was given the day off for the bank holiday in August as well as weekends. (Though I take it they are not asking you to go in on the Boxing Day bank holiday).

Bit of a problem with the EBRT.

I am finding the bladder filling requirement very difficult. When they are happy with the fullness I am in a lot of pain. It's not the "comfortably full bladder" that was mentioned.

Going back to the planning CT scan, I had been told to be well hydrated and then to drink 500ml of water 45 minutes before. By the time I was on the scanner I was in  some pain, and then the Dr was late arriving to put in the canula. I did visit the toilet to "let some out" but as the scan went on I was biting my hand because I was in so much pain.

Turns out that is why I am now struggling. They are trying to match the CT scan each time.

Here's the frustrating bit: I asked one of the radiographers (who was the one at the CT scan and the one who told me to hydrate), if the above was the case. They dismissed the idea. However, I collared a more senior one today and they confirmed that if I had not been so full at the CT scan I would not now need to be so full daily.

Edited by member 02 Dec 2022 at 16:46  | Reason: Not specified

Piers, sounds like you are going through the mill. I hope that you find a routine.

Reading your experience, I am grateful for the patience of the radiographer at my planning scan. I must have been the patient from hell!

Started OK, with a pre-brief and the instruction to drink 750 ml. (I had already been following instructions with laxatives and fluid intake for the previous couple of days). But then on going into the scan room, I failed at one of the first questions - I had tested positive for Covid within the previous two weeks. It seems there should have been a sheet of Covid instructions with the appointment letter, but they hadn't included it or I would have phoned to reschedule. Anyway, she had to gown up and give me a Covid test (negative, as I expected, the positive was 10 days before and I was vaccinated and boosted) before an initial ultrasound scan. By then my bladder was too full, and I had to go off and lose 150 ml. That was a challenge, while I have managed OK ever since surgery my sphincters take a bit of persuasion when it comes to that degree of control.

Back in the scanner room, the initial low resolution CT showed my rectum was too full, despite me following all the instructions about laxatives and diet. So off I had to go with a "mini-enema" which did what it was meant to - except that I couldn't help emptying my bladder as well as my rectum. So back to the beginning, drink 750 ml, wait 45 min. But then there was a delay - presumably with the patient taking the scanner in the interim - which meant by the time my turn came again I was too full. So another need to partially empty my bladder. By the time they were able to do the scan properly I had been hanging around the hospital about 3 hours.

It sounds from your experience it was worth my drama, at least I ended up with a reference volume of around 250-300 ml to aim for. While I didn't manage that particularly consistently at least I knew that if I felt uncomfortable I was too full.

Good luck. And look out for fellow prostate sufferers, as I indicated above there was a little "club" of those going through the same experience - one of which turned out to live quite close and I have since met several times.

[Edit: I invertantly referred to a radiologists when the very excellent staff planning and delivering radiotherapy were of course therapeutic radiographers].

Edited by member 03 Dec 2022 at 21:30  | Reason: Not specified

This is the bit that worries me and I have stressed to them that if there is ANY risk of long term damage I will find a way to deal with the current volume, even if it means taking painkillers.

I KNOW that twice this week they treated without my bladder matching the planning CT. They are a bit coy about showing me the volumes they are measuring, which is annoying. Which leads me on to...

...I have to say that I have very little trust in medics, due to a significant number of cockups over the years. The "Doctor knows best" attitude really annoys me, because all too often it means "Doctor knows best what is best for Doctor". I have certainly sensed that I will be treated in whatever way best suits them, rather than me.

This is a private hospital too. It's a lovely environment, fresh flowers in reception, snacks and hot drinks on offer. But I am not altogether happy with the care.

I think I need to get an appointment to see the Onco again.

Edited by member 03 Dec 2022 at 09:52  | Reason: Not specified

Piers. The full bladder thing is certainly no breeze but in your case an extra full bladder is going to make it extra difficult to hold. Initially I too was getting all wrong. At one session my bladder gave way on the table, much to my embarrassment. However I think you will find you are able to mange your water intake and timing better as the sessions go on.  I started to be able to gauge fairly accurately whether I had to much or too little in my bladder by the level of discomfort. That allowed me to let some out before I got on the table. My sessions were at various times during the day  and I also needed to factor in whether my stomach was full or empty which made a big difference how quickly/slowly my bladder filled. EBRT is a bit of a grind but in the wider scheme of things it's a short interlude. That said I'm still suffering some of the side effects seven weeks on. Chris

Okay, so in light of the pain I was suffering with a full enough bladder to match the CT scan, I wrote to the oncologist.

A couple of days later, one of the radiographers spoke to me and said that the physicist had looked at my scans and concluded that I could NOT reduce bladder size without fear of bowel toxicity.

In anticipation of this outcome, I spoke to my GP and got prescribed some anti-anxiety drugs, to be taken with paracetamol prior to each session.

The past three sessions have been much easier. However, today's was SO easy I collared the lead radiographer and asked them why. 

"We're doing it with a lower bladder volume! The physicist said it's okay, the doctor has signed it off. You clearly weren't going to make it through as things were going, were you".

Whilst one one hand I am pleased that I am not going to be in pain every day, I am somewhat frustrated by the conflicting stories I am getting.