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My hormone/radiotherapy (HT/EBR) journey

User
Posted 10 May 2021 at 17:23

Had my latest phone consultation with onco today.  PSA still below 0.1.  Reported to her that there's been no change in the cystitis situation, and it's been several months now.  She's prescribing some Lidocaine gel to see if that helps with the symptoms.  I also told her about severe pain I now have in my right knee, which is almost incapacitating at times.  I'm using a knee brace and slapping on Voltarol gel but both offer only limited respite.  It's becoming a struggle just walking the dog.

She's arranging for me to have an MRI and CT of my prostate.  I was due a follow-up CT in August but she's bringing it forward and adding the MRI due to concern over the possible underlying cause of the cystitis.  I've mentioned before the non-secreting nature of my tumours so my PSA being so low can't be taken as necessarily positive.

And because of the pain in my knee she wants me to have another nuclear bone scan to rule out any metastasis. Finding it all very depressing at the moment to be honest.

best wishes all, Stephen

User
Posted 29 Jul 2021 at 17:11

Well I had a long wait for the results but the bone scan, the CT and the MRI all came back clear, which was obviously very good news.  The pain in my knee miraculously righted itself so god knows what had caused it.

That's the positive, now for the negative.  The burning while peeing continued unabated.  The Instillagel, like everything else I have tried, made no difference whatsoever.  Then to add to the problem I started passing blood in my urine four weeks ago.

I was called in for an urgent flexible cystoscopy two weeks ago.  They found a stricture in my urethra just below the prostate, which the camera couldn't pass through.  I was given the option of going back to have it dilated under a general, or she said if I could tolerate it they'd continue and do it just using the Instillagel.  As I wanted answers I opted for the latter, which I rapidly came to regret.  There followed one of the most painful and unpleasant half hours of my life.

They discovered no abnormality in the bladder so the pain and bleeding was put down to the stricture.  I was told I could go back in periodically to have it dilated, or I could be taught to self-catheterise.  Given a follow up appointment for a few months time.

While it was good to know there was nothing nasty going on the downside is that, prior to the cystoscopy I had burning and discomfort while peeing, but since that day I now have pain.  I almost dread going to the toilet.  Am very worried that I might be like this for the rest of my life.  

User
Posted 29 Jul 2021 at 17:32

I'm glad for all the positive bits at the start. I hope that the pain when peeing just disappears like the knee pain did. It is good that you had the courage to go ahead with out the general, it is so hard to get NHS service during Covid, you just have to grab it when you can.

If you do have to get involved with self catherisation it is no problem at all I had to do it for a while, and at least it puts you in control rather than waiting for NHS appointments. 

Good luck I hope things improve.

Edited by member 29 Jul 2021 at 22:25  | Reason: Not specified

Dave

User
Posted 29 Jul 2021 at 21:06

Bean121 

I have stage 4 radiation cystitis, my first symptoms were a couple of months after 33 sessions of SRT. My symptoms were blood clots, string like blood clots debris and tissue . Oncology and urology both blamed each others treatment for the issues. I was told not many medics understand pelvic radiation damage. By the time I got a diagnosis from an out of area professor the damage was already done, My bladder capacity is a few ml, I can't even fill a sample tube. 

I developed a uretheral stricture after surgery,had numerous dilatations, including like you one with just the gel, by the sound of it my guy was alot more gentle and we were having a laugh during the procedure. 

I find passing even a small amount of debris gives me pain at the end of the penis before it comes out.

Thanks Chris

 

User
Posted 30 Jul 2021 at 15:03

This PCa thing is a real bummer isn't it? I think I put on here about the results of my colonoscopy. In fact I'm sure I did, but can't be bothered to go looking for it now. I don't have pain while peeing thank God, but I have changed in all departments 'downstairs'. I can't seem to digest food normally at the moment and have a ton of indigestion, so need to get that looked into soon. I DO have troubles peeing, in that it varies. Sometimes I go like a schoolboy, where it all shoots out like a garden hose and others where I stand there for minutes, just passing little dribbles and various other versions too! My problems are mostly round the back now. Having had the old camera up a few months ago, they have (very strangely) only just sent me the official report about a fortnight ago. I was already told that it was 'Radiation Proctitis' that is causing all the blood and turning the toilet bowl and loo roll a nice pinkish red colour everytime. I do get the most intense pelvic pains with it occasionally too. It's a bit worrying, but I've been told that I need to get used to it. On the report it mentions 'Proctopathy', which seems to be the same thing. I see online that it mentions treatments for this, but I haven't been offered anything and going by this latest report, don't think I will be.

Good luck with yours though Stephen, Hope you get a solution soon.

User
Posted 20 May 2024 at 19:46

Well it's been a long while!  Had my latest six month review.  PSA 0.02, good for most men less relevant for me as my tumours were non-secreting. I've never had an abnormal PSA result.  Because of that the first two years after RT I had a bone scan and a thorax and abdomen CT scan.  Then last year the bone scan was dropped and just had the CT.  This year that was dropped too.  Oncologist said was due to concern about radiation toxicity, but given the current state of the NHS I wonder if it was down to cost.  Anyway I expressed my concern and she's sending me for a CT in November.

 

On a positive note I have testosterone!  Six months ago it was "undetectable" but I now have a mighty 1.9 nmol/l.  Well, it's not much but it's a start.  Hopefully I'll be up in the normal range in time for my next test in six months.  I still have zero libido and 100% ED, plus no energy and can't lose body fat, but I'm trying to stay positive.  It's been a long slog since Jan 2020 when I started HT.  Over four years without testosterone really does a number on you.

User
Posted 20 May 2024 at 20:17

Thanks Bean121,

I hope the rise in your testosterone level is a positive sign for the future.  You've had a hard time.

Best wishes,

JedSee.

User
Posted 20 May 2024 at 21:06

Originally Posted by: Online Community Member

Well it's been a long while!  Had my latest six month review.  PSA 0.02, good for most men less relevant for me as my tumours were non-secreting. I've never had an abnormal PSA result.  Because of that the first two years after RT I had a bone scan and a thorax and abdomen CT scan.  Then last year the bone scan was dropped and just had the CT.  This year that was dropped too.  Oncologist said was due to concern about radiation toxicity, but given the current state of the NHS I wonder if it was down to cost.  Anyway I expressed my concern and she's sending me for a CT in November.

 

On a positive note I have testosterone!  Six months ago it was "undetectable" but I now have a mighty 1.9 nmol/l.  Well, it's not much but it's a start.  Hopefully I'll be up in the normal range in time for my next test in six months.  I still have zero libido and 100% ED, plus no energy and can't lose body fat, but I'm trying to stay positive.  It's been a long slog since Jan 2020 when I started HT.  Over four years without testosterone really does a number on you.

I'm on the verge of starting Zoladex. 2 years has been recommended but I don't think I can manage that. It's seems to me that ADT is the worst thing about all of the treatment options.

User
Posted 21 May 2024 at 02:51

Originally Posted by: Online Community Member
On a positive note I have testosterone! Six months ago it was "undetectable" but I now have a mighty 1.9 nmol/l. Well, it's not much but it's a start. Hopefully I'll be up in the normal range in time for my next test in six months.

You're off Zoladex? 4 years is a long time but after two years [at age 77] I found there was a rapid improvement from as little as a month after the Z had stopped doing its thing. Andy has posted a graph giving a timescale for the return of his testoseterone to normal and it took about a year. It seems that once it starts to rise it can go up quite fast. Fingers crossed for you.

Jules

User
Posted 21 May 2024 at 18:58

Originally Posted by: Online Community Member

You're off Zoladex? 4 years is a long time but after two years [at age 77] I found there was a rapid improvement from as little as a month after the Z had stopped doing its thing. Andy has posted a graph giving a timescale for the return of his testoseterone to normal and it took about a year. It seems that once it starts to rise it can go up quite fast. Fingers crossed for you.

Jules

Thanks.  I had my last Zoladex January 2023 after three years on the stuff.  It's taken until now to get a little bit of T back.  I've seen Andy's graph.  Hopefully things will rapidly improve now.  If I knew then what I know now I would never have agreed to three years in the first place.

Edited by member 21 May 2024 at 19:03  | Reason: Not specified

User
Posted 21 May 2024 at 19:02

Originally Posted by: Online Community Member

I'm on the verge of starting Zoladex. 2 years has been recommended but I don't think I can manage that. It's seems to me that ADT is the worst thing about all of the treatment options.

Hi.  I have to say if I knew then what I know now, especially the long term negative impact it would have on my life, I would never have agree to three years on Zoladex.

User
Posted 22 May 2024 at 00:25
Quote:
Quote:

Hi.  I have to say if I knew then what I know now, especially the long term negative impact it would have on my life, I would never have agree to three years on Zoladex.

Yes, I agree that the negative impact is serious and understated. I think I'd do it again but 1 year max would look good to me, the gains after that in terms of survival diminish and don't justify the difficulty.

We can hope that more recent treatment that does away with HT post RT becomes the norm.

All the best for your ongoing recovery. The return of testosterone helps a lot and while mine has come back well, I think if it hadn't I would have been clamouring for some form of replacement therapy.

Jules

User
Posted 22 May 2024 at 20:37
As is said often, some suffer from side effects a lot more than others, it can't be predicted. I had 3 yrs Zoladex (including 2yrs abiraterone and enzalutimide) as I think I said previously.

Just goes to show that despite me suffering from all expected side effects, knowing what I know now I'd do same again.

Peter

 
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