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My radiotherapy journey

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User
Posted 07 Jun 2020 at 10:46

Hi all,

        At long last I have finished the diagnosis stage and started treatment. The diagnosis was as follows:

               Cancer in one quadrant and localised

               Gleason score of 4+4= 8

               PSA = 20.05

               After bone scan and MRI no sign of metastasis, thank goodness!

     My urologist strongly advised that I should start treatment and pointed me in the direction of a private specialist cancer centre here in Accra ( a surprise to me as I'd never heard of the place). I agreed and after meeting the oncologist about three weeks ago I had Gold seeds implanted and started on hormone therapy. Thusday and Friday last I had my first radiotherapy treatment which went fine.

   The only problem for me is that the centre is an hour and a halfs drive away, about thirty miles each way.

   Tomorrow I start my first full week of treatment which I am sure will be quite a challenge. At least I'm on the road to recovery, hopefully. Two sessions done and thirty seven to go.

   I'll post updates on my progress as the weeks pass, thanks everyone for your support and advice over the last seven months of my journey, much appreciated,

                                                                        Bill

User
Posted 07 Jun 2020 at 12:21

I hope the treatment goes well Bill. I found I git more tired as the week went on when I had salvage radiotherapy. Others breeze through, hope the fatigue and side effects are minimal for you.

Ido4

User
Posted 08 Jun 2020 at 07:36
Best of luck with the treatment, Bill. I had nearly an hour's drive each way for my treatment, and it does get to be a drag after a few weeks! The only issue I had was that in the last couple of weeks of treatment the radiation irritated my bladder and I was having to make two toilet stops on my journey home, so it might be as well to look out for suitable places in advance!

Best wishes,

Chris

User
Posted 14 Jun 2020 at 10:38

Thanks Chris and Ido4.

               I've now completed my first week of treatment and touch wood (my head) all is going well. The only problem I have is urinating at night. I have to get up up to six times and due to my prostatitis it is a bit of a strain. The doctor has put me on Tamsulosin but it has only helped a little. I also have loose bowel movements, not too bad though.

      The major problem is the minimum of 3 hours driving in city traffic, not much I can do about that though. Anyway seven down and 32 to go!

                                                Bill

User
Posted 14 Jun 2020 at 12:55

What might be happening at night is that you are peeing slowly enough that you stop peeing before you've emptied your bladder. When you've finished peeing, wait 30 seconds or so, and then pee again. This is called double voiding. Keep doing this until there's none left (other than a few drips you're kidneys generated in the 30 seconds).  If you get your bladder properly emptied, it will take longer before it fills again.

The other possibility is bladder spasms - your bladder is contracting to generate a sense of need to go before it fills. Bladder irritants can make this worse, such as caffeine, alcohol, fizzy drinks, concentrated urine (too little fluids).

Many people have to reduce or eliminate fibre from their diets during radiotherapy. I had to go to no fruit except peeled apples, pears and bananas, no veg except peeled potatoes, no brown flour.

User
Posted 14 Jun 2020 at 15:37

Thanks Andy I will try the double voiding and see how that goes. Would drinking more water before bedtime help matters or make it worse?

User
Posted 14 Jun 2020 at 16:10

Hi Bill

these might be useful for the 3hr journey. I used them as an expansion tank for my journey back from surgery with a catheter bag.

https://www.amazon.co.uk/dp/B0019M7VE6/ref=cm_sw_em_r_mt_dp_U_dUK5Eb3VY9TTP

cheers

TechGuy

User
Posted 14 Jun 2020 at 17:20

Originally Posted by: Online Community Member

Thanks Andy I will try the double voiding and see how that goes. Would drinking more water before bedtime help matters or make it worse?

Drinking more during the day to make sure you're well hydrated, but stop 2-3 hours before bedtime might help, if it's concentrated urine. (Should be light straw coloured.)

User
Posted 14 Jun 2020 at 21:04
Bill, the very frequent peeing at night is the bladder irritation I mentioned earlier. By the time things peaked (typically 10-14 days after RT ends) I was having to pee every 45m all night long and was absolutely shattered through lack of sleep. Fortunately the symptoms do subside quite rapidly after the peak.

My suggestion would be to buy a plastic urine bottle (I got one from Amazon). Doesn't stop the peeing but it means you don't have to get out of bed and that helps the sleep situation massively.

Very best wishes,

Chris

User
Posted 14 Jun 2020 at 22:16

Originally Posted by: Online Community Member
My suggestion would be to buy a plastic urine bottle (I got one from Amazon). Doesn't stop the peeing but it means you don't have to get out of bed and that helps the sleep situation massively

Empty Innocent Smoothie bottle (large size) works very well for this, and has a good fitting lid for when you kick it over...

User
Posted 14 Jun 2020 at 23:26
Hi Bill,

If indeed you are having 39 sessions of RT (called fractions), that is two more than the standard for UK. Here there is an increasing tendency to have only 20 but at a higher dosage.

I remember how busy Accra can be but perhaps not so arduous as travelling over ridged laterite up country if roads are still the same.

Barry
User
Posted 15 Jun 2020 at 07:50

Thanks all. As for the roads Old Barry, most of the journey is on good roads but with heavy traffic excepting for the last five miles which is atrocious. I have to drive from west Accra where I live to NE Accra, about thirty miles.

User
Posted 15 Jun 2020 at 12:36
I think everyone's treatment is tailored to their personal situation, Barry. I had neither 20 nor 37 fractions, but 30 😃.

Cheers,

Chris

User
Posted 15 Jun 2020 at 16:50

That's interesting Chris, although you say you had 30 fractions in this thread but show 32 under your Bio. Certainly 37 fractions has been the standard NICE recommended in the UK. Following good results in the hypofractionated CHHiP trial which alternatively randomised men into a second and third arm using 19 and 20 fractions respectively, NICE approved the latter..
1.3.17 For people having radical external beam radiotherapy for localised prostate
cancer:
• offer hypofractionated radiotherapy (60 Gy in 20 fractions) using image-guided
intensity modulated radiation therapy (IMRT), unless contraindicated or
• offer conventional radiotherapy (74 Gy in 37 fractions) to people who cannot have
hypofractionated radiotherapy. [2019]

taken from NICE Guidelines 9th May 2019 https://www.nice.org.uk/guidance/ng131/resources/prostate-cancer-diagnosis-and-management-pdf-66141714312133

 

NICE have since given further guidance in light of Covid - 19. They say essentially that the course of RT can be shortened with dose appropriately adjusted in need.

Edited by member 15 Jun 2020 at 16:52  | Reason: to highlight link

Barry
User
Posted 15 Jun 2020 at 18:30
Probably was 32 then, Barry. What's in my profile will be correct. Memory's on its way out big time 😀.

Cheers,

Chris

User
Posted 21 Jun 2020 at 10:38

Two complete weeks of treatment successfully negotiated, 12 sessions total. Side effects remain the same as last weekend, namely loose stools and increased urination particularly at night.

  Otherwise all is going well although the driving is the worst part, quite stressful and tiring, but little I can do about that. I'm hoping my experience so far remains the same going forward  but I understand that the side effects are likely to increase as the sessions mount up.

                                                                Bill

User
Posted 21 Jun 2020 at 17:32
Generally in the last couple of weeks of treatment it hits you. You get lulled into a false sense of security for the first month 😄. Hope the rest of your treatment continues to go smoothly, Bill.

Best wishes,

Chris

User
Posted 28 Jun 2020 at 10:21

17 sessions now completed. Not the best of weeks.

 On Sunday night there were heavy tropical downpours which meant due to flooding it took me 2 and a half hours to drive to the centre. Tuesday it took me 2 hours and I arrived at the centre to find there was a problem with the machine. I did get treated but only after a 4 hour wait. The rest of the week went well however.

    I now have another side effect, namely a rather sore anus and bottom crack, annoying but manageable. Otherwise I am coping, we will see what the following week brings.

                                                                      Bill

User
Posted 28 Jun 2020 at 14:52
Glad you're getting through it without too many side-effects, Bill. They do tend to build up over time, unfortunately.

Best wishes,

Chris

User
Posted 29 Jun 2020 at 07:07

Thanks Chris. I understand it will get harder but hopefully not to bad. Congratulations on your progress, you must be well pleased!

 
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