My hormone/radiotherapy (HT/EBR) journey

User

Posted 24 Jul 2020 at 11:44

Started my 20 fractions Wednesday 15th. Had the eighth one this morning and so far all has gone very smoothly. Only two minor bladder issues (too full one day, not full enough another) and difficult to believe I'm nearly half way through.

No side effects so far, other than any physical exertion is starting to make me feel weak and tired, but it's manageable. Suppose I'm approaching the point now where others might kick in.

User

Posted 24 Jul 2020 at 13:20

I found it very helpful that the side effects didn't start for the first week and a half. The too full bladder issue hit me one day, when one of the machines had broken down and I had to wait another 15 minutes! But they didn't tell us that until going to the, still working machine! They let me pass some of it out, which (they said) didn't make too much of a difference, or I would definitely have watered their table! I am now 17 days post RT and am glad that the side effects are receding fairly quickly! Good luck with yours!

Edited by member 24 Jul 2020 at 13:21 | Reason: Not specified

User

Posted 24 Jul 2020 at 13:22

Pleased to hear everything going along ok with your EBRT Bean. My husband had his fourteenth today and all going ok. Just slight problem with hernia getting in the way on one occasion, diarrhoea for a day (which may not necessarily have anything to do with treatment) which in turn affected his piles but soon eased. We can’t believe he only has six more to go and it’s the weekend so two days off now! He received a call from the radiotherapy nurse last Tuesday to check how he was feeling, which was not expected, and the staff have all been wonderful.

Good luck with the rest of your treatment.

Angex

User

Posted 24 Jul 2020 at 13:51

Originally Posted by: Online Community Member

No side effects so far, other than any physical exertion is starting to make me feel weak and tired, but it's manageable. Suppose I'm approaching the point now where others might kick in.

You may find the bladder problems gets a bit worse as time goes on, the nerves get disturbed. I had a few gripes from the Radio - therapists, but never so little in the bladder, that they felt it was unsafe to go ahead. You now have the weekend to rest, take it very easy & be spoilt is my advice - if there is someone to spoil you.

User

Posted 31 Jul 2020 at 21:18

Another week ticked off. 13 fractions done, just 7 left to go. Still going smoothly and still free of side effects, apart from a slight reduction in flow. Keep expecting them to kick in but nothing so far. Haven't even had to make any changes to my normal diet yet. Maybe next week things will change.

User

Posted 31 Jul 2020 at 22:18

Here’s hoping you remain relatively free of side effects.

Ido4

User

Posted 01 Aug 2020 at 12:58

That's amazing. Having been there, done that, I wouldn't wish those side effects on anyone! So hopefully you'll come out the other end with never knowing them. Good luck for your last week!

User

Posted 11 Aug 2020 at 18:42

So that's it then. My 20 fractions finished today. Has all gone very smoothly, thanks in no small part to the great staff at Guy's Cancer Centre, Sidcup.

Side effects wise I've been tired, but still managing to walk the dog four miles a day. Occasionally get a bit of burning when peeing but it soon goes. Flow has felt restricted at times too but not enough to ask for meds and I'm hoping it will pass soon. Only been getting up twice a night fortunately.

Aside from totally abstaining from alcohol and caffeine I haven't had to make any changes to my diet. Have carried on with the fruit, veg and wholemeal bread and have had no bowel problems whatsoever. It's remained business as usual as far as that's concerned. Haven't had any sore skin anywhere either.

So without wishing to tempt fate I seem to have got off pretty lightly so far. My worst experience was one involving a micro-enema and being too far from the bathroom. Luckily I was at home!

User

Posted 11 Aug 2020 at 19:10

Congratulations on finishing your radiotherapy sessions. It sounds like you have done well regarding side effects, hopefully that will continue. Best wishes,

Ido4

User

Posted 11 Aug 2020 at 19:44

Congratulations. Symptoms can get worse over next couple of weeks - they lag behind treatment, but hopefully you'll continue sailing through.

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. There are Macmillan classes (such as HOPE) which are intended for you now. Some places are doing these over Zoom, so do ask your Macmillan centre. It takes a while to realise that you've finished the treatment for what you've been worrying about over the last several months (well hormone therapy trundles along for a while yet).

Edited by member 11 Aug 2020 at 19:48 | Reason: Not specified

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

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?

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