My radiotherapy journey

User

Posted 07 Jun 2020 at 11:46

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 13:21

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 08:36

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 11:38

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 13:55

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 16:37

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 17:10

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 18:20

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 22:04

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 23:16

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 15 Jun 2020 at 00:26

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 08:50

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 13:36

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 17:50

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 17:52 | Reason: to highlight link

Barry

User

Posted 15 Jun 2020 at 19:30

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 11:38

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 18:32

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 11:21

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 15:52

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 08:07

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

User

Posted 12 Jul 2020 at 10:16

I haven't updated for a couple of weeks because not much happened really apart from the daily slog to and from the centre.

Anyway I have now completed 27 sessions with twelve to go. I asked the oncologist about the need for 39 fractions. He told me that this was the optimal amount now and that some other centres were now doing 41.

Side effects are much the same although the urination problems have worsened somewhat to the extent that I now take two tabs of tamsulosin which has improved the flow slightly. I did have some leakage onto the table on one occassion which was a little embarrassing.

All in all however I feel that it is going well so far. I can't wait for it to be over it's very tiring and tedious.

Bill

User

Posted 12 Jul 2020 at 11:32

Originally Posted by: Online Community Member

I did have some leakage onto the table on one occassion which was a little embarrassing.

Same here, although I only leaked enough to dampen my underpants. I switched to wearing disposable pants at that point. I never actually pee'd into the disposable pants during the RT, but the security of knowing I could was comforting.

User

Posted 12 Jul 2020 at 21:35

Nearly there, Bill. Once you get into single figures the end is really in sight. Glad that you’re doing reasonably ok in terms of side-effects.

Best wishes,

Chris

User

Posted 21 Jul 2020 at 17:14

Everything was going well, 32 sessions done and 7 to go, until yesterday.

The machine developed a problem and as of now has still not been fixed. Does anyone know if a long break in the treatment is detrimental to its success?

I am a little worried about this so any information would be welcome

Thanks in advance

Bill

User

Posted 21 Jul 2020 at 19:12

On Easter weekend, men may not have a session from Thursday until the following Tuesday so although it isn't ideal, it isn't a crisis either. If the repair was going to be more than a few days, I would expect the hospital to look at transferring you all elsewhere.

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

User

Posted 22 Jul 2020 at 15:46

Thanks Lyn. Thank goodness they have repaired the machine and I resumed treatment today. They will also treat me on Saturday to make up for the lost days

Bill

User

Posted 30 Jul 2020 at 09:31

At long last my R T treatment is over. It will be good to get my life back after this 8 week trial.

Can anyone tell me how long the side effects will take to clear, the doctor said about 3 to 4 weeks, but what do they know?

Next will be a PSA test in two weeks and my second zoladex jab

Bill

User

Posted 30 Jul 2020 at 09:48

I was told that the immediate side effects (fatigue, bowels, bladder, blood in urine, mucus farts etc) would get worse over the next 2 weeks (and they did!) then improve over the following 8 - 10 weeks (they did). But I had to wait almost 7 months for a PSA test, because I was told the radiotherapy 'messes up your insides' badly, and it takes that long for them to settle down and heal enough to give a reliable PSA level. Side effects of the hormone therapy, if you had it, take much, much longer. I was told it can take a year or more before they wear off. I had my last 3-month hormone injection last September, and the side effects are still with me. Not much you can do in any case - just bear with it.
Hermit.

User

Posted 30 Jul 2020 at 10:21

Originally Posted by: Online Community Member

Funny, I've had 3 PSA tests since RT finished last October 0.06, 0.04, & 0.02

It seems different hospitals have different answers to the same problem..... 😎

User

Posted 13 Aug 2020 at 10:23

Hi all,

Yesterday I had my second Zoladex injection and found out the result of my first psa test since finishing RT.

The score was 0.03 ng

The oncologist was happy with this he said, any thoughts anyone?

Bill

User

Posted 13 Aug 2020 at 12:19

That's excellent but continue with PSA tests at prescribed intervals. If you continue to record such low figures, the length between tests will be increased.

Barry

User

Posted 13 Aug 2020 at 12:30

A very nice result. Do you know if it was 0.03 or <0.03 ? lots of people don't mention the less than symbol, but if it is there it means your result is lower than the machine can detect it may even be zero.

Dave

User

Posted 13 Aug 2020 at 16:27

Yes indeed Dave it was <0.03. The Oncologist did explain that this meant virtually zero. My next test will be in 3 months when I have my next Zoladex injection.

User

Posted 13 Aug 2020 at 19:04

Excellent result. Long may that continue.

Ido4

User

Posted 06 Nov 2020 at 14:26

More than three months now after RT. The following are side effects I am experiencing:

Hot flushes

Piles

Shrinking testicles

Total lack of libido

Aching hips and legs and numbness of my right foot sometimes accompanied by pins and needles.

My PSA is under 0.02 and my testosterone level is 0.4

The oncologist is sending me for an MRI of my pelvic region and legs.

Otherwise I'm fine!

Bill

User

Posted 06 Nov 2020 at 17:24

Hi Bill, I think they are mainly side effects of HT not RT.

Piles and hip, pelvic pain might be to do with RT, they were all in the path of the radiation beams. With your psa so low, I don't think the mri will be looking for metastatic cancer, they might be looking for something else.

How much longer will you be on zoladex? I've been off it for six months but still zero libido.

Dave

User

Posted 06 Nov 2020 at 17:30

As someone also waiting to get their libido back after HT I found the below:

https://bjui-journals.onlinelibrary.wiley.com/doi/full/10.1111/j.1464-410X.2006.06013.x

"35% were in the normal range at 12 weeks, 85% at 18 weeks, 89% at 24 weeks, and 96% at 1 year."

User

Posted 06 Nov 2020 at 18:00

Hi Dave, I'm afraid I've got another year to go.

Bill

User

Posted 07 Nov 2020 at 14:27

Well HT ain't much fun, but I accepted it as a price worth paying. My HT started at diagnosis for 24 months with RT at 6 months. Some studies show 18 month HT has same outcome as 24 month HT so I did consider stopping early, but medics said that's not what we would normally do, so I decided I may as well not upset the apple cart and stuck with it. I guess if the side effects are really bothering you you could stop HT, but I think you probably should keep on it for the full term to have the best chance of knocking the cancer on the head. If my cancer returns and doctors say HT for life I would have to think very carefully about whether I would accept that.

As mentioned a few times I haven't fully recovered from HT but I'm just getting on with life. Next psa test is 2 weeks time I will then update my profile with results.

Dave

User

Posted 08 Nov 2020 at 12:22

Thanks Dave, yes i will definitely try and tough it out, otherwise there was not much point in struggling through the RT treatment. That took quite a lot out of me.

Bill

User

Posted 18 Apr 2021 at 08:36

Hi all,

I haven't posted for a while as not much was happening apart from the normal side effects.

Eight months now after RT and recently my motions have become very erratic, sometimes every day and then not for five days. Sometimes loose with abnormal levels of gas. Worst of all often with blood. Also occassionally wet ( if you know what I mean) farts.

Is this normal at this stage? Thanks in advance for your responses.

Bill

User

Posted 18 Apr 2021 at 12:50

Yes these things can happen Bill, I had Piles problems BEFORE the RT & HT, starting to get them back now. !!
Such is life.

User

Posted 18 Apr 2021 at 13:50

Originally Posted by: Online Community Member

Hi all,

my motions have become very erratic, sometimes every day and then not for five days. Sometimes loose with abnormal levels of gas. Worst of all often with blood. Also occassionally wet ( if you know what I mean) farts.

That is a very accurate description of how I used be, things have settled down but it took time.

Thanks Chris

User

Posted 18 Apr 2021 at 16:12

Took a good year for things to settle down for me.

Best wishes,

Chris

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