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External Beam Raditotherapy side effects

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User
Posted 28 Jul 2021 at 18:26

Hello

I was diagnosed with localised prostate cancer and have been on active surveillance since March this year.  After many telephone consultations with various doctors, none of them have really agreed with the best course of treatment for me, which I have found extremely frustrating. I am currently on Hormone therapy, and due to have External Beam Radiotherapy starting mid October over 20 sessions. 

I would like to hear from anyone who may have just undergone this treatment recently, to find out about the side effects - when they started, what they were, and how long they lasted for. 

My concerns are that with the job I do, I am in a car for around 12 hrs a day, with no easy access to toilet facilities. 

 

User
Posted 28 Jul 2021 at 19:10

I had brachy and EBRT. So that means the EBRT was only about half what someone on EBRT alone would be given. Anyway short answer for me was no side effects, but there are people on here who have had side effects, I don't think any very serious ones I would take a guess that 50% don't have any problems, perhaps 20% did need to find toilets in a bit of a hurry. A bottle and a large paper road map to unfold in the car which you can pretend you're reading whilst discretely having a piss is handy. Mind you anyone using a paper map probably looks very unusual now a days (and they call sat nav progress). Of course number twos would be more difficult and for a few people on RT that is the problem.

As for fatigue etc. Well yes, possible. I think you will have to come to some arrangement with your employer, flexibility is required. 

Dave

User
Posted 29 Jul 2021 at 15:42
No reply as yet from MKR16 but presumably although on AS his situation has changed to the extent that RT is now considered appropriate and he has started HT which in nearly all cases in the UK is given before it.
Barry
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User
Posted 28 Jul 2021 at 19:10

I had brachy and EBRT. So that means the EBRT was only about half what someone on EBRT alone would be given. Anyway short answer for me was no side effects, but there are people on here who have had side effects, I don't think any very serious ones I would take a guess that 50% don't have any problems, perhaps 20% did need to find toilets in a bit of a hurry. A bottle and a large paper road map to unfold in the car which you can pretend you're reading whilst discretely having a piss is handy. Mind you anyone using a paper map probably looks very unusual now a days (and they call sat nav progress). Of course number twos would be more difficult and for a few people on RT that is the problem.

As for fatigue etc. Well yes, possible. I think you will have to come to some arrangement with your employer, flexibility is required. 

Dave

User
Posted 28 Jul 2021 at 21:59
John didn't really have any side effects at all except, towards the end of the treatment programme, needing an afternoon nap some days. That wouldn't be ideal if you are driving so perhaps best to check with your car insurer that they will cover you if you drive for a living.

Also, have you checked about timings? J was lucky that he had the 8.30am appointment every day but at some hospitals the RT will be at different times every day.

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

User
Posted 29 Jul 2021 at 00:47
If you are still having HT, the RT will likely add side effects to some extent. One never knows in advance what these will be or how severe beforehand. However, tiredness and earlier fatigue could be a problem if you are so long in a vehicle. I would also have a receptacle with a screw top so you can pull over and have a pee. Towards the end of my EBRT, which was rather different to what you will have, I was getting up 8 times a night to pee but this reduced to pre RT level of once a night about 9 weeks after RT ended. During the day I plotted in advance where various toilets were on my journey to/from the hospital. For longer journeys I used a bag on my thigh connected by a tube to my penis. This was an earlier version of the Conveen system - you can google details. I did have some other minor side effects that were minor but the above were concern and would be a problem for you at the wheel if you were similarly affected.
Barry
User
Posted 29 Jul 2021 at 08:49

Sorry for changing the thrust of this thread but I wonder why, if you are on Active Surveillance , you are  undergoing hormone therapy and considering having EBR. I was diagnosed this year and am on AS but am not presently undergoing any treatment.

User
Posted 29 Jul 2021 at 10:57
I had virtually no side-effects for the first month of my six weeks of treatment, but for the last couple of weeks of treatment and several weeks after needed to pee every 45m or so, 24h a day, due to the radiation irritating my bladder. This is a very common side-effect. I certainly couldn't have managed a driving job during the month that this was affecting me. Side-effects generally peak about 10-14 days after treatment ends. The bladder issues subsided relatively quickly; bowel side-effects (passing a lot of mucus and needing the loo 3-4 times a day) were much slower to subside, and it was a good six months before I could confidently undertake a long journey.

I'm now 2 years and 5 months after the end of RT, and things are pretty much normal again. A very occasional (once every few months) "mucus mishap" but that's about it.

Best of luck with your treatment,

Chris

User
Posted 29 Jul 2021 at 13:18

Hi,

I have recently finished my external RT of 37 sessions.   Fatigue and the need to go for a pee urgently were my side effects.   I think the fatigue was made worse as I had a daily drive of an hour each way to the hospital and back.   I didn't need to go to the toilet frequently but when I did, it was urgent!  3 weeks after treatment finished I would say the side effects had gone as far as I can tell.

Cheers

Jay

User
Posted 29 Jul 2021 at 15:19

I'm having a late (18 months) Radiation colitis problem, bleeding from Damaged Rectum veins - treated with APC today.
https://www.dbth.nhs.uk/wp-content/uploads/2017/07/wpr40231-colonoscopy-or-flexible-sigmoidoscopy-and-argon-plasma-coagulation-apc.pdf

Edited by member 29 Jul 2021 at 15:20  | Reason: Not specified

User
Posted 29 Jul 2021 at 15:42
No reply as yet from MKR16 but presumably although on AS his situation has changed to the extent that RT is now considered appropriate and he has started HT which in nearly all cases in the UK is given before it.
Barry
User
Posted 01 Aug 2021 at 16:43
Get a toilet card , that explains your situation. I got one never had to use it but handy especially if a nosey person see you reliving your self the card explains it , otherwise police might be called 😂 for exposure ?????
User
Posted 02 Aug 2021 at 19:12

Hi

 

Thanks to everyone who has replied to my post, and sorry for not reply individually - I am new to this, and did not see the replies.    The information has been very helpful. 

I now have a further dilemma to think about.    My consultant has offered me either the 20 day EBRT or a 5 day, spread over 2 weeks (eg. Mon/Weds/Fri and then Mon/Weds the following week)

This is quite a new treatment I understand and wonder if anyone has had the same, and again any feedback on side effects would be great. 

 

User
Posted 03 Aug 2021 at 01:18

I think this higher dose rate is called Stereotacic Body RT,  SBRT for short. It seems to be being offered more often now than say three years ago when I was irradiated.

If has been suggested that it is as effective as more conventional EBRT, but has fewer side effects.

It is not as tried and tested as EBRT, so in the long term it may give better or worse outcomes than EBRT. It would be unethical for the medics to offer you a treatment which is worse than the best standard of care available, so it might be OK.

I being someone who likes to advance science, would take the latest treatment on offer, the more people on the new treatment the sooner the medics will find out if it is better or not.

Also the fewer trips to hospital the better. 

Dave

User
Posted 03 Aug 2021 at 13:04
I think you have got this wrong Dave, the OP says the 20 fraction option is EBRT not SBRT. 20 fractions of EBRT are being increasingly used following the successful CHHIP hypofractionated trial. From what I have read there is not a lot of difference between the results and the standard 37 fractions. The dose given is approximately 3 Gy for each fraction of the 20 fraction compared with 2 Gy for each of the 37 fractions. Although the total amount of radiation is given is greater with the 37 fraction option, due to the higher dose of the 20 fraction alternative, the overall effect is calculated to be very similar. Clearly, fewer hospital visits for the patient and less setting up time for the hospital benefits both.
Barry
User
Posted 03 Aug 2021 at 14:58

Hi Barry, it is certainly possible I have got this wrong but I think the OP isn't being offered 37 fractions at all. He is being given the choice between 20 fractions and 5 fractions, and I think 5 fractions takes him in to the SBRT arena. That is certainly the way I have read his post, though I will admit at no point does he mention SBRT.

Dave

User
Posted 03 Aug 2021 at 17:19
Hi Dave,

Seems I have misread and you could be right about SBRT being the option offered unless unless EBRT has been further hypofractionated.

Barry
 
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