Possible biochemical recurrence.

I have not yet fully decided, and want to wait for the doctor's formal letter. But my thinking currently is this:

I chose my surgeon for RP based upon his preference for conservative surgery. When we discussed, immediately before the procedure, how I would like him to approach the surgery, I elected to assume some risk in return for the chance of preserving better function.

After biochemical failure, I did not immediately rush into radiotherapy and instead waited for a PSMA PET scan to identify precisely where the cancer was.

There is the consideration that current medical thinking does not make a one shot game EBRT intervention to the pelvic area. Furthermore, with every passing year, treatments are improving. Even in the time that I have had PCa treatment options have changed, there will probably be other techniques and treatments in five years time.

If I now elect an approach that is treating tissue that is not demonstrably diseased (lymph nodes) and having ADT, with almost guaranteed side effects, in return for a 3-4% improved chance of long-term survival, I will be departing from my previous strategy.

As the doctor said to me yesterday, having radiotherapy without ADT is not a crazy idea.

Edited by member 25 Oct 2022 at 07:39  | Reason: Not specified

Well if he doesn't suggest it, you will need to politely insist

There is a prolific American doctor on Youtube, who has a lot of videos relating to all matters PCa. In one of them, he says "just wanting it out is absolutely the right decision for most cancers. PCa is not one of them, due to collateral damage considerations"

Before surgery, I consulted with a number of surgeons to gauge their opinion and was quite surprised by the lack of consideration given by some of them to QoL. One of the leading surgeons had (and may still have) the comment on his website "you don't actually need a prostate, unless you want to have children". Righty ho.

I am sceptical about ADT. I think there is plenty of research that points to it offering the greatest chance of a cure. But at what cost?

Always one for cynicism, I am also aware that two years of ADT puts you at least two years down the road before you find out whether EBRT has worked, by which time the onco involved is probably long forgotten!

I am wary about a temptation to make the data fit my preferred course of action. However, my view is increasingly that PCa is under diagnosed and over treated. With that in mind, and given my previous choices, it seems sensible to me that accepting a level of risk, in return for the fewest side effects, is the way to go.

I recognise that, if I take a super conservative course of action, I may put myself in a position of playing whack-a-mole with PCa for the rest of my life. But then, I don't know how long my life is going to be, and there are plenty of factors that may make it a relatively short one. Maintaining a good QoL is therefore of paramount importance.

I am seeing another onco in ten days and, providing he is happy to play ball, I am going to go for treating the visible recurrence only, no ADT.

Was he given tamoxifen with the bical?

This evening I saw the local onco, recommended by the Marsden.

He is happy to do EBRT without hormone therapy, because he understands my reasons. He also seemed to give the impression that it doesn't matter that much.

He does, however, want to include the lymph nodes. He said that whilst theory is that adding them in increases side effects, in practice they have few issues. He also said that whilst lymph nodes can be treated later if PCa crops up there, rarely do they see a patient cured if they have to do it. It usually pops up somewhere else later.

He said that I have:

5% chance of worsened bowel function

5% chance of worsened urinary function.

50% chance of worsened erectile function (I didn't like this stat).

Royal Marsden said I'd need 4 weeks of EBRT, this chap is saying 6.5 weeks. Which will go on past Christmas.

He concurred with the Royal Marsden that, if I am not going to go for ADT I need to crack on. So I've signed the forms and start in 2 weeks.

Edited because this site's paragraph spacing is odd.

Edited by member 03 Nov 2022 at 21:34  | Reason: Not specified

Yes, it seems that it's now possible to target lymph nodes more accurately and thus have less problems with overdoing it. I had three targeted specifically and a lesser number [must ask next time, how many] treated as "elective". Possible side effects from destruction of too many lymph nodes include lymphedema which manifests itself with symptoms like swollen ankles because the nodes aren't performing their task of returning fluid to the bloodstream. In reality I had no signs of lymphedema so recent advances in the delivery of RT are making a difference both in treatment and outcomes.

Along with improved delivery of RT it could well be that the need for HT afterwards has diminished. My oncologist was still recommending 3 years but I've pulled out at 2 and even that might not have been necessary. I guess the difficulty is, that it takes about 5 years before it's possible to have definitive results that prove a treatment has been more successful than one that has gone before, even if the early signs are good

[press enter once only 😀]

Jules

Edited by member 04 Nov 2022 at 00:29  | Reason: Not specified

One disappointment is that the Royal Marsden said I would need 4 weeks of EBRT. This chap locally is saying 6.5 weeks. I queried this with him and he shook his head saying, we see no evidence for 4 weeks.

I am a bit tempted to go back to the Royal Marsden and ask the consultant whether there is any evidence that I can put forward to reduce the duration. I don't obviously want to get into a "...but the Royal Marsden said...." situation, but at the same time I don't want 65% more days of treatment than may be necessary.

Or should I just be quiet and take the advice locally?

I'd suggest take the advice. This treatment costs a packet per session and occupies equipment that's in high demand. There's a great deal of pressure on them to reduce the number of sessions and hence to save money etc. If, despite that, they're still recommending longer treatment it's probably with good reason.

Overall RT is not difficult to get  through

Jules

Best of luck with your RT. I can really understand why you have decided to not have HT as QOL plays a huge part. I suppose we’re all just a bit scared not to go with the more tried and tested routes, but I think if rob needed salvage treatment we would really consider the same path as he really wouldn’t like the idea of more HT and for longer than he had previously. Glad they’re getting things moving quickly for you too 👍

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 15:46  | 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 20:30  | 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 08:52  | 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.

Piers, I'm glad to hear you have got it sorted with you bladder fill level. I was prescribed Solifenacin which helped with easing the bladder urgency but it was still difficult to control. I'm now seven weeks post RT and things are gradually settling down. I can hold a fuller bladder but it's not yet back to pre RT capacity and I need to get up at least twice a night for a pee compared to the usual once. I'm still suffering from some bowel urgency as well. The lesson I have learned is go when you think you need to go. If you leave it until you know you need to go then you have just a ten second fuse to do something about it. Hopefully it will settle down in time. Chris

Tomorrow's EBRT will see me with more fractions completed than I have left to go. I might throw a small party.

This is not what I thought. I did some research online and formed the opinion that it was going to be a minor inconvenience for 6.5 weeks, but no more. Turn up each day, chat to the nurses, have a coffee and my treatment and go home. I might endure some slightly loose stools, but that would be it.

So far, the reality has been significantly less fun. Today's treatment was quite painful as my bladder rapidly filled. In fact, I had to get off the table initially to "let a bit out". By the time the session was over I nearly leapt from the table at full height to get to the toilet.

I think my bladder has scar tissue from the RP and it is just not flexible. It has gone from being a balloon to being a freezer bag, with little flexibility.

I have started getting some rectal inflammation too. It is quite uncomfortable to sit down at times.

So, my conclusion is that I am either experiencing something worse than most other people, the accounts online are underplayed or I am a monumental wuss. I am prepared to accept any of the above explanations!

Piers. It sounds like you might be suffering from radiation proctitis. It certainly made my bowel movements a real PITA. Mine started about mid way through the sessions and I was given Proctosedyl suppositories to take. They did ease the symptoms a bit but it seemed to sort itself out in the latter sessions. I hope yours does.

Did anyone here, who underwent EBRT, suffer with memory issues? In the past week, I have become mentally hopeless.

I lost my credit card - I never lose my credit card.

I ordered two of my son's Christmas present.

I have complained to two retailers about items that have not arrived, only to find them neatly put away in my office. I have no recollection of receiving them.

I had a tradesman at our property this morning. I made and delivered him a cup of tea and then had no recollection whatsoever of doing so.

I am wondering if it is the treatment, or whether I am becoming senile!