Possible biochemical recurrence.

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

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

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

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 

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!

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.

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.

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

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.

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.

I imagine HT on top of EBRT would be quite hard. It's one of the reasons I opted out of it. That and the relatively small predicted benefit of me having it.

It sounds like you're heading in the right direction, though.

I've had my first consultation with the onco post-RT. He is happy with my PSA and says that he thinks it will drop to <0.1 which is where is needs to be.

I suddenly started feeling more energised about 3 weeks ago. Not back to normal, but better.

The only side-effect I still have is the discomfort in my left-lower abdomen. The onco says it's unlikely to be diverticular problems. Dr Google disagrees. Given that one of my PSMA PET scans identified diverticulae I am inclined to side with Doc Google.

One annoying problem that I do have dates back to my RP. My bladder volume is reduced and if I hold on for long periods I get quite an unpleasant pain in my lower abdomen. I am GUESSING it's because my bladder is not as elastic as it once was. Does anyone else have this after surgery?

Piers, I have probably already told you this before, my bladder capacity did shrink after surgery, looking at some urine diaries my capacity was down to 250 mls before SRT. It is important to add that I had a dozen excursions into my bladder and I was also doing intermittent self catheterization/dilatation, this may have caused my issues. 

It may worth speaking to your urologist to flag up your concerns and see if there are any suitable treatments to the bladder.

As I have previously mentioned on this forum numerous times if you start passing lots of blood,clots and debris,get some help. My level of bladder damage is quite rare but that is probably why it wasn't recognised sooner.

Thanks Chris 

So the fun and games continue.

I have been experiencing back pain at night, so had a pelvis and lower back MRI. The GP has called this afternoon sounding quite concerned.

The MRI says (amongst wear and tear type stuff) "Diffuse hyperintensity of the bone compartments sparing part of the L5 and the sacral bones are suspicious for diffuse metastatic infiltration of the spine".

Now, my PSA has fallen from 0.42 to 0.27

My last PSMA PET scan showed no sign of bone mets.

Is this likely to be something unconnected to PCa?

My father-in-law's PSA fell from 16 to 2.4 to 1.2 (without treatment) so no one realised it had spread to his kidneys and liver.

Piers, I am off to see a physiotherapist this morning for an assessment on my knee. I already have osteoarthritis of the hip and probably in the hands.

I am reasonably mobile but the joints do ache. The knee pain gets far worse when in bed and night , apparently there is a link between night pain and hormones.

My last PSMA pet scan a few weeks ago included the knees but nothing was detected,we know that doesn't mean there is nothing there. It did detect another pelvic lymph node tumor which is going to have SABR treatment.

Hope you get a solution soon.

Thanks Chris 

It may be that's what I get.

If I am honest, I am not entirely comfortable with the comms from the onco. He is very much of the "I know best" school of medicine and is reluctant to communicate outside of consultations. If I ask him a question in a consultation he is rather "ugh, you won't understand the answer. But in simple terms..."

When I was dealing with the surgeon, he was superb. I had his mobile number and email address. I never abused them, but if I had an occasional question I asked it. He responded in minutes usually, with a straightforward and practical answer.

I think I know the radiographer at the place I am going (such is the joy of an extended period in the cancer care system!) and he is a decent chap. I will see if I can agree beforehand what we are doing and why.

By way of an update.

My PSA is still not <0.1 but is falling.

Pre-EBRT my erectile function without "assistance" was eventually sometimes  around 80% of pre-RP. Immediately post-salvage EBRT there was no change. In the last month or so, however, there has been a bit of a drop off. I am 7-8 months post-EBRT and unassisted I struggle for 60-70%. I am into Viagra / band territory.

The EBRT team said that what I had two weeks after the course is what I would have long-term. However, I have read elsewhere that there can be a decline up to two years afterwards. Can anyone advise on this please?

In other news, I am trying shockwave therapy. This is supposed to promote blood flow, by encouraging the body to grow new blood vessels. I am half way through the course, but it can take several months before the full effect is evident. The physio says that I should go from 15/25 to 20 or 21/25, where 25 is a perfect erection. I will update things go along, in case it is of interest to anyone.

I've never heard this.

You want to be doing the maximum to exercise the penis. Try to get on the penile rehab dose of Tadalafil, which is 2 x 20mg/week. Hopefully that should enable you to get good erections on those two days and quite likely the following two or more days too Make sure you do get regular erections. It doesn't sound like you need a pump at the moment, and if you can get good erections (with Tadalafil if necessary), that's better than a pump. The Tadalafil also improves blood flow in the area when you don't have an erection, and the 2 x 20mg/week dose will give continuous dosing. (The 5mg daily low dose will also give continuous dosing, but you won't get the extra couple of boosts which may help to achieve better quality erections, although you might find you can do just as well with the 5mg daily low dose if offered that instead, and you can always save up a few day's worth to get a higher boost.)

Piers, I take it all your tests are at the same lab. I had my bloods taken at , hospital,a regional health centre and occasionally at my doctor's, all three locations use the same hospital lab. I do now have all my bloods taken at the area health centre at roughly the same time of day.

Thanks Chris