My hormone/radiotherapy (HT/EBR) journey

Absolutely.  Felt surprisingly low after the last session was over.  Also another thing is that there's no sense of closure.  Whatever has happened has taken place out of sight inside and you feel no different after the treatment than you did at the beginning.

When does this study take place?

Glad to hear your mental state has improved. Not so good on the physical side, hopefully you get some improvement and treatment following your oncology appointment.

Obviously, there could be an issue at the tip of the old fella, but also referred pain can feel like it's there. I got a UTI from a catheter, and although that was gone in a week, it took about 3 months for the pain when peeing to go.

The fatigue is because both the hormone therapy and the radiotherapy tend to make you anemic, so you get a double-whammy towards the end of treatment, and for a couple of months afterwards. The effect due to the RT will go soon. If it doesn't, get a blood test from your GP, and they might put you on a short course of Vitamin B12 when they see the results. The urgency and mucus farts will gradually go - in my case, it was preparing for my 12 month review that I suddenly realised they'd gone at about 10 months. You're still within scope of short term side effects, so mostly you are just waiting for these things to decay away. Most of mine had gone in 3 months, but as I said, the mucus farts lasted about 10 months. 14 months on, I'm probably still not eating as much fibre as I did before, and if I did, I might still have some problems.

Just had first post-EBRT blood test and consultation.  PSA was 0.03, which was good.  Discussed how I'm feeling.  Went through bowel and bladder stuff (burning while peeing has stopped by the way), but nothing considered worthy of concern. 

Discussed the fatigue, lack of energy and strength.  Onco put it down to the HT not surprisingly.  Said if it gets any worse or starts to effect my QOL they can switch me from Zoladex to Bicalutamide.  Not sure how to feel about that to be honest.  Will have to do some research and hard thinking.  Next appointment Feb 2021 so plenty of time to decide.

all the best everyone

Stephen

Hi  Stephen, just read your thread as I am gathering info for tips etc before my husband starts RT next month. Very helpful so thanks to everyone that posts.

He is to have 33 sessions, I see most folk mention 20/37 sessions so I wonder why 33?? Will ask at planning appointment next week.

Take care.

Had latest consultation.  PSA at 0.1.  That's not an increase in the previous reading of 0.03, it's because my treatment has been switched back from Guy's Cancer Centre to my local hosp and 0.1 is the lowest they record there.

Still struggling very hard with fatigue.  Still walking the dog 4.5 miles a day but it's difficult.  Walking up steps or hills (unavoidable where I live) reduces me to a wreck.  Legs like cotton wool, gasping for breath.

Burning while peeing returned at Christmas and hasn't gone away.  Onco thinks it unlikely related to EBRT since I finished that last August.  Have submitted urine sample for analysis and been put on antibiotics but condition not improving.  Worried that it might be the sign of something more serious.

Next review in three months, then will have a CT scan in August to check state of prostate as my tumour is a non-secretor so can't rely on PSA test alone.

all the best all

Stephen

Thanks Chris.  I did give cranberry a brief try but it had no effect.  Conscious that I may not have drunk enough or given it long enough though.  How much would you say you drank per day?

It seems pretty certain it is radiation cystitis as my urine test came back all clear.  Wish they'd told me the result sooner as I took a one week course of antibiotics for nothing. 

Hi Peter.  Thanks for the very kind and helpful post.  Regarding water I was up to 2.5 litres per day during EBRT.  I'm probably doing around 2 litres now taking into account all fluid.  In addition to water I drink turmeric tea every morning, cranberry drink, sugar free squash and decaffeinated tea (having dropped caffeine for the EBRT and never gone back).

As for the fatigue and my daily walks.  I do struggle but daren't scale back.  As I see it my fatigue is due in large part to muscle/bone wastage.  So I have to keep pushing through for fear that the alternative could end up being serious mobility problems.  I read in another forum of one guy ending up having to use a wheelchair because his leg muscles had wasted to the point where it became too painful to walk.  Fear of that happening to me keeps me going.

Take care mate, good to hear that things are going ok for you.

all the best

Stephen

Been on the cranberry extract tabs and cranberry juice two weeks now.  Also did a two day OTC course of Sodium Citrate.  No improvement, still burning like hell.  Will have to call urology next week.  Worrying about bladder cancer now.  A very negative view I know but I'm pretty sure others will empathise.  Once you know you have PCa every other little symptom and niggle, no matter where it hits, and you immediately think it's cancer.

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.  

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.

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

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