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After rt

User
Posted 08 Feb 2019 at 16:45

just finished 20 sessions of rt yesterday , towards the end of treatment i was up all night peeing , or trying ? i have now had two bad nites of having not much sleep is there any tips to try and get half a decent kip ? Crazy question is it best to pee standing up or sitting down ?? 

User
Posted 08 Feb 2019 at 17:08
Crazy answer - it depends how much of a penis you have left after any radical treatment!

Best of luck.

Cheers, John.

User
Posted 08 Feb 2019 at 17:32

Malc 

I am guessing your RT was your primary treatment. Surgery messed up my urine flow and stream, for a long time I would sit to urinate in order not to spray everywhere.

No doubt some of the RT treatment guys will be along to help.You say "trying " to urinate, if you cannot pass urine and feel your bladder is feeling uncomfortable get your self down to A&E. Retention is not pleasant and can have adverse effects on other organs.

Thanks Chris

 

User
Posted 08 Feb 2019 at 19:21
I'm starting RT on Monday, so reading things like this doesn't exactly fill me with optimism. Do you know if it's a common side-effect? I really hope that things get better for you.

Chris

User
Posted 08 Feb 2019 at 21:08
Towards the end of my RT I was having to get up as much as eight times a night to pee notwithstanding the fact that I had been on Tamsulosin to relax the sphincter to help pass urine. My journey to/from the hospital was planned so that I could use a toilet en route. (The Hospital was not so concerned about me having a full bladder for treatment). After RT ended, the need to urinate gradually returned to pre treatment twice a night by about10 weeks post RT. In the meantime, I obtained a Conveen day and night bag with a appropriate method of securing. This was connected by tube to a sheath on my Penis and this proved very useful, particularly on long journeys and I would recommend. My GP arranged for me to collect supply of sheaths from local chemist but not sure this is now the current modus operandi.
Barry
User
Posted 08 Feb 2019 at 22:16
I wrote a long post and then deleted it. I’m happy where I am. Still definite I’m not giving in on QOL over longevity. I’m 100% back to normal after 3 1/2 yrs and have loved it despite knocking back RT five times and now facing HT and Chemo very soon. So so glad I’ve not had RT even though they are still suggesting it now , but admitting they are not targeting suspected higher abdomen spread. It’s all a bit of a NICE guideline thing I think , and we all need to be a little bit wiser rather than nod our heads and undergo life-changing and sometimes pointless treatment rather than tick a “ next stage “ box. My Onco recently smiled when he recommended RT again even though the scans showed nothing on my prostate bed. But he suspected spread higher up that the RT wouldn’t cover at all. So why would I have the RT ?? Just think of flow-charts like at school. It boils down to that mostly I think.

If life gives you lemons , then make lemonade

User
Posted 09 Feb 2019 at 10:27
Chris,

You are right in a sense in so far as every man should carefully consider undertaking any treatment and take on board potential side effects before taking the plunge. Your case was made more difficult because the whereabouts of your cancer cells do not show up on scans. So any RT given in your case would have been close to where your Prostate was in the hope that that was where the cancer was which is not always the case. Over time it is possible that your cancer cells may have gone further afield so chances of success of any radiation for you would statistically be less now. For others, in a different situation, RT can be effective in eradicating or slowing the advance of their cancer, albeit with the well known potential side effects risks.

Barry
User
Posted 09 Feb 2019 at 10:38
Indeed. In my case there was agreement amongst all the medical professionals that HT/RT was the appropriate - and hopefully curative - treatment. I am very worried about the potential side-effects, though, I must admit. Does anyone know how common issues such as Malcolm is experiencing actually are?

Chris

User
Posted 09 Feb 2019 at 10:42

One thing I'd suggest is do be sure to keep up your fluid intake: when you have to pee frequently, it's always tempting to cut down - but that makes it much worse. Concentrated urine irritates and increases the urge to pee. Plus it leaves you more open to infection, which also can increase frequency. Plus a good intake can help 're-educate' your bladder to do its job better.

Plus, of course, see your GP for advice and possible prescription to help.

Good Luck!

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 09 Feb 2019 at 11:10
Malc, do not try to manage this on your own - if you cannot empty your bladder you need to go to A&E. If you can wee but it is an effort, either give the RT nurses a ring or see your GP - you may have radiation cystitis. Urinary retention is often described to be a sudden onset problem but it can also creep up on you. Can you wee during the day better than at night? Have you tried drinking pure cranberry juice (not the cheaper ‘from concentrate’ stuff?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Feb 2019 at 14:15

How many fractions are you having , couple of tips i expect in your paperwork already  wear  colthes  that are easily to remove and put on also a dressing gown much better than hospital gown and know where the toilet is ! Let me assure you side effects differ greatly between everyone . and time goes quick and deffo a family feeling amongst all patients  

User
Posted 09 Feb 2019 at 14:18

Yes i had 700 millilitres  of urine drained , now pain free but got a cather in for few days and hopefully be ok when taken out ? 

User
Posted 09 Feb 2019 at 14:40

Originally Posted by: Online Community Member

How many fractions are you having , couple of tips i expect in your paperwork already  wear  colthes  that are easily to remove and put on also a dressing gown much better than hospital gown and know where the toilet is ! Let me assure you side effects differ greatly between everyone . and time goes quick and deffo a family feeling amongst all patients  

Thanks - I appreciate the advice. I'm having 32 fractions, with the first one on Monday. Needs doing, and I'm told it's a "curative" treatment, so fingers crossed that the side-effects won't be too severe.

Chris

 

User
Posted 09 Feb 2019 at 15:49
What I didn’t know is different health trusts do things different ways . I was given red card once rectum too full , luckily I did a movement so able carry on treatment for that day . I had two warnings for too much gas inside me,the radiographer gave me a good tip drink peppermint tea so I had one cup a few hrs before treatment and it worked no gas issues . Little tips all help .
User
Posted 09 Feb 2019 at 17:42

Yes hospitals vary in their requirements for men having RT, some even expect a man to have an enema before each fraction. My treating hospital in Germany just wanted me to present as far as possible each time in the same condition without any pre requirements.. They did however take great care in establishing my Prostate position during initial preparation when they gave me 5 CT set up scans in one week with an MRI thrown in for good measure. They also did a CT scan prior to some fractions and found positioning so close that they omitted some of later scheduled scans.

Chris, 32 fractions is an unusual one for primary External Beam radiation in the UK. It's normally either 37 or 20 in a hypofractionated
version. Fractions of RT for mets or to relieve them can be at varying numbers, often at higher doses. It is also possible that newer ways of delivering RT or where it is used to augment Brachytherapy is likely to affect the number of fractions given.

Reverting to the original post, I found I was able to catnap during the day which helped compensate for the lost sleep at night caused by frequency.

Edited by member 09 Feb 2019 at 17:46  | Reason: Not specified

Barry
User
Posted 09 Feb 2019 at 18:49
I thought 32 was a little unusual myself, but when I asked at my planning session I was told that it was standard at Clatterbridge, which is where I'm having my treatment, so I'm sure they know best!

Chris

User
Posted 09 Feb 2019 at 22:34
Hi Chris,

With the 37 fraction course each session (fraction) is 2Gy. It would be interesting to learn whether the dose is increased a little so that the overall affect (though not the total Gys) is designed to have the same result). In some hospitals abroad they are experimenting with very few fractions but using much higher doses of radiation. Radiation is now much more refined with new advanced machines and this may have a bearing on it. I see Clatterbridge has advanced linacs.

Barry
User
Posted 10 Feb 2019 at 12:43

Originally Posted by: Online Community Member
I'm starting RT on Monday, so reading things like this doesn't exactly fill me with optimism. Do you know if it's a common side-effect? I really hope that things get better for you.

Chris

We are all different Chris, don’t dwell too much on this before you start your treatment tomorrow

Edited by member 10 Feb 2019 at 12:44  | Reason: Not specified

User
Posted 10 Feb 2019 at 13:58

After my open RP I had incontinence issues which rapidly cleared up and I was 99% ok until my Salvage RT last year.

I had 33 sessions of SRT and my incontinence issues came back, both urinary and bowels.

Now a year later my bowel movements are back to normal but I reckon my urinary continence is only around 75%.

I started using pads again in November 2018 and am still using them.

I also go to the toilet a lot especially at night and I find sitting down much easier.

Had my last Prostap jab a couple of weeks ago so no more treatment for now.

I regard my continence issues as much less important than the PCA issues that I may have to face in the future.

 

Edited by member 10 Feb 2019 at 13:59  | Reason: Not specified

User
Posted 10 Feb 2019 at 14:24

I do t know about a standard for delivering RT. i was under the impression it depended on your PCa. i was put on 20 fractions as i was Gleason 9 and my oncologist told me high grade cancers were better treated by less but more intense fractions

User
Posted 10 Feb 2019 at 15:25
Cheshire Chris let me assure you , everyone is different ref side effects , once in rt department speak to other patients it helps immensely , I found it ended up like a family and I used Macmillan centre for a chat now and again very very supportive . Also got a toilet card off them handy item to have .
User
Posted 10 Feb 2019 at 19:10
Cheers, Malcolm. I feel embarrassed to make such a fuss about something that may not happen, but I can't help worrying about it. Fingers crossed that worry will prove unfounded.

Chris

User
Posted 10 Feb 2019 at 19:52

 I totally agree with talking to other people it actually helped me such a lot every day I turned up for my fraction.  But I would say my oncologist and the radiologist warned me not to compare the treatment that others were getting with what I was getting. As an earlier post said quite rightly, we are all different and the amount of fractions delivered are very much dependent on your individual cancer and no two persons bodies are going to react to the radiotherapy in the same way.  My cancer started when I was 66 so I was extremely lucky in that I had just retired  and I didn’t have the pressure of worrying about getting back to work or being too tired and despite telling my wife she did not have to come every day, she attended every fraction with me giving me support and in that I count myself lucky 

Edited by member 10 Feb 2019 at 19:57  | Reason: Not specified

 
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