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My hormone/radiotherapy (HT/EBR) journey

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User

Posted 04 Oct 2020 at 19:35

Just a quick update, it's now nearly seven weeks since I finished RT. My mental state has improved thankfully. Physically things not so good, and if anything are worse since my last update. The restricted urinary flow has cleared up and I'm back to normal, but I'm now getting a burning sensation at the tip of my old fella whenever I pee. Also, bowel wise, I'm still suffering with an urgency to go coming on without warning. Had a couple of unpleasant accidents.

Other than that still struggling with a lack of energy and random pains that feel like they're in my bones. I've been taking a high strength Vit D3 and K2 supplement since I started on Zoladex in January. Feeling so miserable due to the pains I added a Calcium supplement a couple of weeks ago. Don't know if it does any good or not.

I shall raise the above issues at my next phone consultation with the oncologist on 14 October.

All the best everyone

Stephen

EDIT: Having now done a little more research it seems entirely possible I am suffering from radiation cystitis. Just goes to show you can't take it for granted that it's all over once treatment stops, or even several weeks later.

Edited by member 04 Oct 2020 at 21:13 | Reason: Not specified

User

Posted 05 Oct 2020 at 09:48

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.

Ido4

User

Posted 05 Oct 2020 at 10:13

The change from being treated with great care, & then left to your own devices, is a sudden move.

It would be nice, if the Hospital gave you a ring, every few days to see how things are going, a bit of "Oh, that often happens, it will soon stop" goes down a long way. But I expect, the Hospitals are too busy, for that sort of thing - that is why this forum, is so valuable, & as a (So far) minimal problem, patient, I don't mind coming back now & again.

User

Posted 05 Oct 2020 at 10:32

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.

User

Posted 05 Oct 2020 at 19:48

Originally Posted by: Online Community Member

Just goes to show you can't take it for granted that it's all over once treatment stops, or even several weeks later.

Indeed. Also worth noting that sometimes, the side effects develop over a long period of time and may not become apparent until years later - ED is one example of this, as is radiation proctitis.

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

User

Posted 16 Oct 2020 at 22:08

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

User

Posted 17 Oct 2020 at 00:47

Stephen,

You need to be doing exercise while on hormone therapy - that counters the fatigue.

I take part in a cancer gym class, which has moved on to Zoom since COVID, and cycling.

Edited by member 17 Oct 2020 at 07:03 | Reason: Not specified

User

Posted 17 Oct 2020 at 10:30

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.

User

Posted 17 Oct 2020 at 11:43

PSA response is great Stephen. HT does cause fatigue but can be mitigated with exercise.

Ido4

User

Posted 19 Oct 2020 at 09:11

Originally Posted by: Online Community Member

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.

There are many factors, that make the number of fractions different - I had 20 at Addenbrooks, which were not pleasant - but am well on the road to recovery now, 12 months later. Left off HT from May.

Factors, such as location, size & number of Tumours all play a part, there are many other considerations.

Edited by member 19 Oct 2020 at 09:12 | Reason: Not specified

User

Posted 19 Oct 2020 at 14:59

Hi Andy. Yes I know about the positive effects of exercise. I do actually walk 4.5 miles a day with the dog still, but it has become more of a struggle. I shall push on though.

all the best

Stephen

User

Posted 19 Feb 2021 at 11:50

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

User

Posted 19 Feb 2021 at 12:04

Try cranberry juice, Stephen. I had burning pain while peeing after I finished RT, caused by bladder irritation, and cranberry juice worked wonders for me in calming it down. Just the normal made-from-concentrate stuff from the supermarket.

Best wishes,

Chris

User

Posted 20 Feb 2021 at 17:49

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.

User

Posted 20 Feb 2021 at 21:38

Cranberry juice from concentrate isn't really good enough; try either fresh pure cranberry juice from the supermarket OR buy bags of frozen cranberries and zap them up yourself OR buy cranberry extract tablets (from a health food shop like Holland & Barrett or from the women's health section at the supermarket. Also try cutting out caffeine completely for a couple of weeks.

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

User

Posted 26 Feb 2021 at 20:00

Hello Stephen

I’ve been following your thread since last summer, as your journey runs about three months ahead of mine. I have learnt so much from you and from many others on the forums – thank you to all. Now I’m posting for the first time.

You ask how much people drink, though I think you were referring specifically to cranberry juice. My answer is about water.

I aim at 1.5 litres/day. My nurse specialist told me to keep well hydrated for a healthy, well-functioning bladder, and I’ve followed her advice ever since, including during the EBRT weeks and since finishing. I still get bladder frequency and urgency, but it’s manageable, and I’ve never had burning or other discomfort. I believe my hydration regime has helped not only with urinary health but with general fitness and energy. I scale it down in the evening, but rehydrate on getting up in the morning.

I am light for my height, so 1.5 litres daily is about as much as I find comfortable. If you are more heavily built, you could possibly aim at 2 litres/day. (Or perhaps you do already?)

I am sorry to read about your fatigue. I realise you know all about exercise being recommended, so perhaps there’s another cause, or it’s a combination of things. The 4.5-mile walks sound excellent on the face of it, but if it’s still a struggle you could try doing things differently. Maybe try some exercises you can do at home, gentle at first, building a routine that suits you.

Since my diagnosis I’ve made a big effort to maximise my fitness. Simple stretches first thing every morning, strength and flexibility exercises mid-morning. Our Living With and Beyond team sent me an exercise video, and I developed my own daily routine from that. I do short walks with my partner and longer ones on my own. I love being out in the countryside, alone in a wide landscape, working out my own thoughts. All the physical stuff makes me feel better, and counters any depressive thoughts or tendencies.

Stephen, I hope you find a way through the fatigue. Pick and mix and experiment with your own choices and ideas. Trust yourself to work out a way. Tackle different things (alcohol? weight?) in tiny incremental ways that you can maintain.

You had a super second PSA reading – something to rejoice about, even if you don’t altogether trust it until you’ve a clear CT scan.

best wishes

Peter

Edited by member 26 Feb 2021 at 20:44 | Reason: just a small word added

User

Posted 28 Feb 2021 at 20:53

Thanks Lynn. I bought cranberry extract tabs last Thursday (today's Sunday) and have been taking them since then. Also drinking cranberry juice every day, though produced from concentrate as it was the only option. Four days on no beneficial effect from either. I've bought a course of Cystocalm (sodium citrate) which I'll start tomorrow. It says not to be used by men but I figure that's mainly because cystitis is rare in men so they expect sufferers to get checked for underlying reasons rather than using OTC remedies to tackle the symptoms. No biological reason why I shouldn't take it.

User

Posted 28 Feb 2021 at 21:04

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

User

Posted 28 Feb 2021 at 21:13

Old Al was also eventually forced to rely on a wheelchair (he was called Old Al but was actually only in his early 50s) until he took up swimming. Eventually he was able to overcome the fatigue and regain full mobility. It will be good when the swimming pools are allowed to reopen.

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

User

Posted 12 Mar 2021 at 21:11

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.

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