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Possible biochemical recurrence.

User
Posted 17 Dec 2022 at 17:13

Originally Posted by: Online Community Member

Piers, nothing like that during my salvage RT, I didn't have HT. Could it be your anti anxiety meds.

Thanks Chris 

 

I've only been taking them immediately prior to EBRT sessions. But I suppose it could be linked.

User
Posted 17 Dec 2022 at 17:28

I was on Sertraline for anxiety when I was first diagnosed. Played havoc with my memory!

Best wishes,

Chris

Edited by member 17 Dec 2022 at 17:32  | Reason: Not specified

User
Posted 18 Dec 2022 at 15:53

Thanks Chris,

Moderator(s), can you please split this conversation?

Thanks,

Peter 

User
Posted 19 Dec 2022 at 13:45

Hi Peter,

As requested we have split your post.

https://community.prostatecanceruk.org/posts/t28848-New-to-this-site--anyone-has-an-idea-of-what-is-going-on-here

Best wishes,

Carol
Digital Manager
Prostate Cancer UK

 

 

User
Posted 21 Dec 2022 at 10:47

 

 

This really isn't going terribly well.

 

Yesterday I was booked in for an afternoon slot, but one of the radiographers called me at midday to ask where I was. I said that my appointment wasn't till the afternoon, but they said it had been moved, because I was the only patient left for the day.

 

It turns out that I, their secretary and the radiographers all had a different time for my appointment!

 

I went to some lengths to move my day around and got there within an hour, only to be met with one particular radiographer who was clearly fuming because they had been unable to leave early. 

 

Because I had been called in at short notice I was not sufficiently hydrated and was on the table for half an hour or so. They did the treatment, but my bladder was not full. Which causes me concern. I am not sure if it is connected, but I have bad diarrhoea today

 

As I left the building, the radiographer was speeding out of the car park.

 

I rather wish I hadn't agreed to help them out by attending early!

 

I have to say that I don't feel particularly safe at present. Does anyone know whether a single incidence of insufficient bladder volume is likely to cause issues?

 

 

 

 

 

User
Posted 21 Dec 2022 at 10:54
Put your concerns in writing to the hospital.. I doubt anyone on here is technical enough to answer that.

On a positive note though none of the fractions on their own should be sufficient to do permanent damage (I believe)

User
Posted 21 Dec 2022 at 12:40

Originally Posted by: Online Community Member
I have to say that I don't feel particularly safe at present. Does anyone know whether a single incidence of insufficient bladder volume is likely to cause issues?

If the bladder wasn't full enough to have the treatment safely, they would not have gone ahead with it.  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Dec 2022 at 17:18

Piers , on several occasions my bladder was completely empty because I had left my catheter drain tap open, I never had any of my 33 sessions stopped for any reason. My treatment was over five years ago and I don't know to what level I was scanned or what they can actually see. I was diagnosed with radiation cystitis and my bladder has been damaged, but the numerous excursions into the urethra frequent urethra catheters and a suprapubic catheter may have made matters worse .I also had issues with surgical clips. 

I found out after treatment that 5-10 percent of people who have pelvic radiation treatment suffer with radiation cystitis, usually it calms down. Your bladder may had sufficient for the scan to go ahead anyway. I would hope medical staff are professional enough not to cut corners and take risks.

Thanks Chris 

 

 

 

User
Posted 21 Dec 2022 at 18:35

Originally Posted by: Online Community Member

I found out after treatment that 5-10 percent of people who have pelvic radiation treatment suffer with radiation cystitis, usually it calms down. Your bladder may had sufficient for the scan to go ahead anyway. I would hope medical staff are professional enough not to cut corners and take risks.

Thanks Chris

 

I would hope so too. But there have been some instances of professionalism absence and it plays to my wariness about medics.

User
Posted 22 Dec 2022 at 13:39

OK, so I am now 21/33 fractions, so nearly 2/3 finished.

I have a sore rectum and loose stools. However I MIGHT have a gastric infection, because I have had stomach cramps which are too "high up" to be EBRT damage. Feeling a little tired sometimes, but no urinary problems...YET.

I have just had my PSA done. My last pre-EBRT three months ago was 0.41, todays is 0.42.

So rate of increase has slowed to almost nothing, but no decrease yet. Is that what I would expect to see? Obviously I was hoping to see a magical fall to undetectable!

 

 

 

 

User
Posted 22 Dec 2022 at 13:53

Piers, I had my PSA tested 4 weeks after my SABR treatment, it was far to early but the good news was the steady increase had stopped and my PSA was the same as 8 weeks earlier.

I suspect your test is also far to early. My understanding is that the test 18 months after SRT is the important one. You may also get a bounce. My onco would accuse us of trying to micro manage the situation, we have to look at the long term picture.

Thanks Chris 

User
Posted 23 Jan 2023 at 14:52

 

I finished EBRT 2 weeks ago today.

 

They said that my side effects would worsen for two weeks after treatment (so peaking now).

 

In reality I think I have got off quite lightly. I have had few bowel problems, except when I have eaten too big a meal or one that involved Brussels sprouts. I have however had, since the treatment started, hemorrhoids. These I can treat with Anusol, but they are a bit uncomfortable.

 

I am led to believe that the side effects will wear off over the coming weeks.

 

Mentally I am not up to par. The first week after treatment ended I felt like I'd been released from prison - party time! Now, however, I feel lethargic and I am not motivated to do things. I am procrastinating a great deal. I am hoping that this too will wear off.

 

When I finished the course, one of the radiographers said I could feel depressed after two weeks. They explained it was because sides would be at their worst and I would not be going there for support. To be honest, it doesn't feel that way, I just feel flat. I am actually very pleased that I don't have to go there anymore!

 

In conclusion, I found EBRT quite a challenge both physically and mentally. I'd never have thought that just having a full bladder and laying on a machine for fifteen minutes could turn into such a psychological challenge.

 

I hope I don't regret my decision to not have ADT, but on the other hand I would not have wanted that to contend with as well.

 

 

 

 

User
Posted 23 Jan 2023 at 15:35
Looking forward to hearing your PSA scores over the next 20+ years!
User
Posted 23 Jan 2023 at 15:47

Originally Posted by: Online Community Member
Looking forward to hearing your PSA scores over the next 20+ years!

I am told that it should fall to <0.1 within 6-9 months. If it doesn't, or it rises, they didn't fix it.

User
Posted 23 Jan 2023 at 17:05
The low after finishing cancer treatment is well documented - Macmillan even do an information leaflet about it. It is something about treatment finishing but not knowing whether or not it has worked, along with adrenalin (busy busy busy during diagnosis, deciding on treatment, preparing for treatment and then having treatment ... followed by a great big nothing) and a bit of grief thrown in.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jan 2023 at 23:10

Yes, there's something a little odd about the recovery period post RT. My take on it was that while I was well aware that I'd just gone through a serious cell damaging experience, I should be able to get out there, exercise and the recovery would be like an "ordinary" injury. Unfortunately it's not something you can really come to grips with and while you will recover, it will probably take slightly longer than you'd think and the curious lethargy is frustrating. You expect to recover instantly and it doesn't happen.

Jules

User
Posted 24 Jan 2023 at 08:00

Originally Posted by: Online Community Member

Yes, there's something a little odd about the recovery period post RT. My take on it was that while I was well aware that I'd just gone through a serious cell damaging experience, I should be able to get out there, exercise and the recovery would be like an "ordinary" injury. Unfortunately it's not something you can really come to grips with and while you will recover, it will probably take slightly longer than you'd think and the curious lethargy is frustrating. You expect to recover instantly and it doesn't happen.

Jules

 

Thanks Jules

It's weird. I am ostensibly fine and I am able to exercise properly again, but mentally I cannot be bothered with things that I really need to be bothered about! For example, dealing with difficult situations in my business. I am finding myself re-diarising tricky jobs until "tomorrow", instead of dealing with them.

I think there is possibly the factor of me deferring everything whilst I was having EBRT, because I needed to focus on getting through it. Now it's over, I am having to address everything I delayed, whilst simultaneously dealing with a recovery that is psychologically more difficult than I expected.

 

 

 

 

User
Posted 03 Feb 2023 at 09:43

 

Approaching 4 weeks post EBRT and sides are starting to resolve. For good and bad!

 

I had a sore bum from the treatment, and that is starting to improve.

 

But a weird thing: The treatment appeared to IMPROVE a long standing gut problem I had. For a good few years, my gut has been unhappy with carbs and I have had to eat like a pigeon to remain even vaguely slim. I had quite a lot of gas.

 

During EBRT this changed and I was able to tolerate carbs better, whilst slowly losing weight and eating quite a lot more than usual.

 

My two only guesses about what was going on are that either EBRT adjusted something in my gut microbiome, or the presence of cancerous cells was causing my gut to rebel.

 

Unfortunately, this week, my gut has started to return to how it used to be and I have also put on a kilo. A bit early to say that what changed has changed back, but I was quite enjoying my new found gut health and ability to eat a broad diet.

 

 

User
Posted 03 Feb 2023 at 20:56

I can't really offer any explanation for the change in gut behaviour but if things are returning to "normal" then it must be good news that there is hopefully no permanent damage to your gut. I'm now over 12 weeks post RT and gut mucus is still causing issues from time to time or as someone very aptly posted - never trust a fart again.

User
Posted 03 Feb 2023 at 21:39

Hey Piers

I am interested about your reactions to work 


it appears from what you said that this is important to you 

has your work drive returned yet 

I ask this because I love my work and hope. My up coming treatment doesn’t change that 

 

 

 

User
Posted 04 Feb 2023 at 07:56

Originally Posted by: Online Community Member

I can't really offer any explanation for the change in gut behaviour but if things are returning to "normal" then it must be good news that there is hopefully no permanent damage to your gut. I'm now over 12 weeks post RT and gut mucus is still causing issues from time to time or as someone very aptly posted - never trust a fart again.

 

The onco, from the get go, said my gut would not be the problem, my rectum would. So presumably my anatomy is such that it was not in the line of fire. This was what allowed a lower bladder volume. He was right, though, it was mostly my anus that suffered.

 

It would not be true to say that I had no problems higher up. I had the very occasional problems with pain in my lower left abdomen, followed by several bowel movements in short order, followed by one loose bowel movement and that was the end of it. This happened again, once, earlier this week.

 

It seems to be eating a big meal that triggers it and the symptoms are consistent with diverticular disease. It is likely that I do have that, because a previous PSMA PET scan identified it. Why EBRT would bring out symptoms I do not know.

 

In your case, I hope that time is a healer.

User
Posted 04 Feb 2023 at 08:41

Originally Posted by: Online Community Member

Hey Piers

I am interested about your reactions to work 


it appears from what you said that this is important to you 

has your work drive returned yet 

I ask this because I love my work and hope. My up coming treatment doesn’t change that 

 

 

Morning Nigel.

 

Interesting question.

 

With the knowledge that I would require recovery time, I told everyone I deal with that I would be dealing only with essential business until a certain date. I didn't say why, I just said "if it's not urgent, don't call me" so that I had some space.

 

Two weeks after EBRT ended, I felt mentally fragile. My physical side effects, at their worst, were trivial. I just felt a bit vulnerable and introspective.  At work, I was unable to face tough decisions and deal with crappy stuff. Any letter I didn't like the look of was put back in the in tray and I diarised time to deal with it at a later date. I found myself dealing only with the easy stuff and things I wanted to do.

 

During that period, I had a weird sensation that I should have been doing more, like everything had to be dealt with "immediately" and I felt a bit panicked that it wasn't being. There was no good reason for this, I rarely deal with all outstanding matters immediately, it was some sort of mental aberration.

 

I kept my exercise regime going, but at a maintenance level. I just tried to stay moving, lift a few light weights, stay in touch with my aerobic fitness and, well, keep going. I went to bed at 9pm (instead of 10).

 

I have started to find work a little easier and have approached the backlog like I'd eat an elephant - one bite at a time! As I type, my inbox is full of papers, but relating to only one matter. So, I am getting there!

 

My physical fitness is starting to return and so has my drive to do work, but I don't feel back "on it" yet.

 

One thing I have done, though, is take a conscious decision to put myself first and commit to wellbeing time. So week one after EBRT I went for a hair cut, the following week I went for a facial, last week I went for a Thai massage, all of these during the working day.

 

My mindset currently is that my recovery and good health going forward are of paramount importance. If at all possible, I want to continue with my attitude of "it's only work, it comes second to ME" which I have cultivated during the EBRT process.

 

I underestimated how challenging a process EBRT would be, and also the magnitude of the after effects. This has been, in part, due to some of the information on the Internet from people like Cancer Research. Some of it made EBRT sound almost like fun, with few negatives. That was not my experience. Perhaps it is deliberate, so that men are not put off having treatment.

 

To summarise, the first two weeks after EBRT saw me treading water in my business. I have gradually become more effective, but four weeks later I am not entirely "back". I have developed a "me first" attitude to my work life, which I hope to maintain going forwards.

 

User
Posted 04 Feb 2023 at 20:54

My sympathies Piers, as someone who had salvage RT last summer so a few weeks ahead of Chris Bromsgrove.

I thought I was handling RT well for the first couple of weeks, no problem really though I was ready for bed a bit earlier than usual. I cycled to most of my sessions. But then it caught up with me, while there were no obvious signs of what the X-rays are doing I found myself without energy and run down. It was a good thing I am retired.

Improvement has been slow, but my wife has encouraged me. After about six weeks we went on holiday and did a fair amount of walking, nothing heroic but proving to myself I could still do things. While I admit my own self-motivation is on the low side, we have tried to keep active when the weather permits, and went skiing (fairly gently) last week.

The sensitivity in the rectum is slowly reducing, but I still sometimes experience "tummy cramps" which need rapid access to a toilet not knowing whether the issue is wind or poo. Happily those are now less frequent. The bladder was also affected somewhat (having had previous surgery, my sphincters aren't of the best anyway) and I am more sensitive to caffeine than I have been since the aftermath of surgery - but with the security of a pad I did manage the odd coffee stop while skiing.

I think some of the problem has been HT, low testosterone does reduce the "get up and go". I am taking encouragement from reports on this forum that recovery will happen but take roughly as long as being on HT - on that basis I am hoping things will keep improving until May/June. We are pencilling in some more ambitious activities after that.

Good luck!

Edited by member 04 Feb 2023 at 20:55  | Reason: Not specified

 
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