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My hormone/radiotherapy (HT/EBR) journey

User
Posted 11 Aug 2020 at 20:02

Well done it sounds like you did even better than me. I finished the RT two weeks ago and as Andy says my side effects have actually worsened, still manageable though.

              Bill

User
Posted 11 Aug 2020 at 22:52

Originally Posted by: Online Community Member

One issue is that it can all suddenly feel like an anticlimax - having been treated and fussed over daily for weeks, suddenly everyone's forgotten you and you might feel a bit lost. 

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.

User
Posted 22 Aug 2020 at 21:18

Well it seems I spoke too soon regarding side effects.  Hubris and all that. 

Physically, urgency to pee and poo kicked in a week after finishing treatment.  Also, for the former, flow rate significantly reduced, burning increased, and inabilty to actually empty bladder.  Not nice.  For the latter, well let's just say the old saying holds true - never trust a fart.  Sorry if that is too much info for some, but then again we're all members of the same club!  Farmer Giles has also put in a repeat appearance, big time!

Mentally, been very depressed.  I've suffered with treatment resistant severe depression for years.  Funnily enough felt the best I've felt for years while getting the EBRT.  Positive action played its part I suppose.  Almost like the treatment gave me a purpose in life that's been lacking for some time.  Since it finished been very down.  Mentioned previously have a longstanding alcohol addiction problem.  Abstained totally with surprisingly little difficulty for the duration of the treatment to the point where I thought I might stand a chance of finally kicking it out of my life.  Sadly didn't last because post-treatment depression has sent me back to the same old crutch.  

Sorry for pouring all this out.  Just thought maybe it will be helpful to new people

 

Edited by member 22 Aug 2020 at 21:20  | Reason: correct spelling

User
Posted 22 Aug 2020 at 21:43

Hi Stephen, sorry to hear of the side effect problems. I was much luckier than you, because most of my RT was brachy with only a little EBRT. I think these problems will get better reasonably soon, and the good news is at least they didn't kick in until end of treatment, trying to manage the side effects and make your way to daily treatments at the same time would not be good. 

I like alcohol, fortunately I can take it or leave it. I think it is good that you were able to stop during your treatment. I can understand the mental health problems, Covid lockdowns are not good for us. 

Dave

User
Posted 23 Aug 2020 at 12:01
These side-effects are very, very common and they should quickly start to ease within the next few weeks. Side-effects generally peak about 10-14 days after treatment ends. For the peeing issues, ask your GP or hospital for a prescription for Tamsulosin - it worked wonders for me and is the only medication I'm still on 18 months after finishing RT. It should get rid of both the flow issues and the feeling of being unable to empty your bladder.

The bowel issues took a bit longer to go away for me, but within 3 months of treatment ending the "wet farts" were probably down to once every few weeks and within a year they'd entirely ceased. 18 months on I'm left with a somewhat increased frequency compared to pre-RT, which my consultant says will be with me for life, I see a bit a clear mucus on the TP once in a while, but that's really all. Certainly nothing of any significance.

The mental aspects of finishing RT can be overlooked. You've been made a fuss of and looked after for a couple of months and then suddenly it all stops. It may sound weird but I was quite upset on my last day of RT - I almost felt abandoned.

Things will get better, I promise you. This is the toughest time to get through, but in a month's time you'll be through it and well on the road back to normality.

Very best wishes,

Chris

User
Posted 23 Aug 2020 at 12:14

Chris is spot on - the sudden loss of the daily attention and treatment feels like you've been forgotten.

It takes a while before your side effects go and realise your treatment is done and you can need to start planning the rest of your life, hopefully cancer free.

There are a couple of courses which many cancer centers run for this post treatment period, such as HOPE. Contact your cancer/Macmillan centre and ask if they are running them. Some are doin so over Zoom at the moment.

Also note that hormone therapy does make you more susceptible to depression. You should reach out to your mental support network or GP. Have you made contact with a local prostate cancer support group? These can be really helpful, not to mention you may make some really good new friends, and you can support each other through down times and benefit from each others support. This is all more difficult due to COVID, but many groups are meeting up in small numbers and/or online.

User
Posted 23 Aug 2020 at 17:58

Originally Posted by: Online Community Member
The mental aspects of finishing RT can be overlooked. You've been made a fuss of and looked after for a couple of months and then suddenly it all stops. It may sound weird but I was quite upset on my last day of RT - I almost felt abandoned.

Thanks Chris (and Andy and Dave too).  Must admit I'd prepared myself for the physical sde effects, possible mental effects never occured to me.  When I left the Cancer Centre after my last session I almost didn't want to go.  Oh well, it is what it is as they say, just have to pull myself together and look to the future.

best wishes

Stephen

User
Posted 23 Aug 2020 at 18:15
I do understand exactly what you mean, Stephen. I had the same feelings myself. You've had weeks of being supported every day and then suddenly you're all alone. It can be a very lonely feeling. You need to know, though, that you're not alone; there are people here who've been through the same thing and we'll do our best to help!

Take care of yourself,

Chris

User
Posted 23 Aug 2020 at 18:29

Bean121

Exactly the same experience of finishing SRT. Although round trips got a bit tedious and it was only 90 minutes there and back, I did miss the routine of daily treatment. I think in general radiology staff are kind and caring.

Hope all goes well with your recovery. 

Thanks Chris

User
Posted 15 Sep 2020 at 13:20

When does this study take place?

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.

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.

 
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