Bladder sphincter inflamed by radiation

P.S.   Radiotherapy itself causes inflammation/ irritation to the entire area zapped.  So your bladder neck and particularly prostate gland itself have become swollen and your urethra crimped.   That's why you are currently experiencing some difficulty voiding.  Have you been given Citravesent ?  If not grab some.   It's not expensive and it works well.

Just take one day at a time.  You'll get there.

Dear Dudley,

It is very good to hear from you again, thank you. I see you have quite written me off as a super hero. I should have thought HT was enough evidence but now it is certified by Dudley. WOW! fame at last. I won't need to keep trying. Ah! that's a relief.

Yes. no surrender. The trick is to manage the unexpected. The trouble is we are all first timers (no repeats allowed) and the observers as you say have seen it all before but each of us is a totally unknown entity - different sensitivities. different characters. Not a receipt for plain sailing. It seems then the '14 days' is part of the professional obstacle course we all have to negotiate before our pains need be taken seriously. I have been given nothing, but advised to try the occasional Ibuprofen. My wife is expert in the use of it and tells me it takes hours to work. Not much good if you are hopping around with your legs crossed. So I have been taking 400mg three tomes a day, the maximum dose. 200mg did nothing.

Yes water, lots of water inside, 2lr daily and with Winter upon us we will get lots of water outside as we walk. Diet yes, very important to have a better diet than formerly. I am fighting a rear guard defense against moving quickly to a hugely bad diet to be kind to Rectum. There are a few proven really good foods like cooked tomatoes and cucumbers twice weekly good, every day much better. Lots of ones that may be little better than marketing hype. Placebo effect comes at a high price. For radiotherapy egg, fish and chicken are back in. It seems that. egg is a daily necessity for cell repair. I got an app for my iPhone a while back to help train me in my Pelvic Floor Exercises. I reached level 9, the top level, last weekend. How about that? No exercise to get the sphincter open and I had not thought of the fond hug from the outraged Prostate. Ah well! If it gets worse I shall have to take a season ticket for the 3am session at A&E.

And a POSITIVE MENTAL ATTITUDE, puts me in mind of "Only when we Laugh" hospital TV Comedy Series. "I'm sure I am, l'm H A P P Y" sung in a minor key.

The management of the side effects is totally subservient to the achievement of the primary goal to which the whole exercise devoted, a cure. To cave in and accept the inevitable is to guarantee a degree of trouble that is very likely avoidable and in addition the loss of good quality life for himself, wife and family.

George

 

Thankyou for reminding me about Roy Figgis,  Norman Binns and  Dr Thorpe etal.  I really enjoyed that show !

Not sure I was suggesting you fitted into the Superhero mould George.  I know I don't.  You may have misinterpreted me there ?    But no matter,  it's only semantics anyway.  More importantly,  just concentrate on transcending the whole exercise and each day reaching,  a beautiful place in your mind.

No super hero , DudleyI. If it is really hurting, I make a lot of noise. It is more bearable if you do apparently. Studies have shown this. My dentist was very put out when I had a nerve that wouln't deaden with an injection. He had to complete the job anyway. I told him I would make lots of noise. He was just to carry on. He did. I fear his reputation was dammaged that day.

The langage difficulty was my making. Your note was perfectly clear. I like a bit of tongue in cheek. George

Hi Peter, 

Thank you. Yes I was expecting some help before today's treatment. The nurse was not in the department. This happens perhaps two days a week. I find it a disturbing shortcoming in care. The patient is as vital to both safety and outcome as the staff. Guidence needs to be given before the treatment following the patient firat conceiving a concern.

As it happened, the treatment seemed to feal more benign. Was there a change? Was it just fancy? I prefer to know before the event. 

Please also see my reply to Dudley, I will post it shortly.

George

I'm glad to hear yesterday's session felt less problematic,   but not surprised.  

As a man of Faith yourself,  I know you will recognize why it was so.  ' If a man love me,  he will be loved of my Father and we will come to him and make our abode with him'.

Now that's what I call a standard of care !

Yes, it sweetens every turn in the road. We may not like every stretch, we may delight in others but best of all we know where we are going and we know the way.

I see your point Peter (once I added the missing M). Still, not so good to have treatment options sprung on you and expected to choose. Perhaps I need to say, I'll think about it.

George

I had a bad night. A brief sleep and I couldn't believe it. The clock said 23:28. What time of the night is that to wake up.  I felt it to be 3 or 4am. After that it was reading, email, reading, listen hmmm! reading puntuated by agonising and pathetically slow dribbles, somtimes a thread, but even the most fanciful professional medics wouldn't call it a stream, would they? O yes they would do I hear from many voices. Well, I suppose you are right.

Well, necessity is the mother of invention. By 6am I was thoroughly brassed off, weary of pain. Then I noticed that when I gave up relaxing, yes it stopped. But when I relaxed again there was a brief moment of reduced pain. Plus tightening both stopped the flow and diminished the pain. It seems that preparing for a leek I do 10 firm pelvic floor clenches and then relax. Yes, reduced pain. As it builds up do 3 or 4 clenches and relax. Yup! not perfect but a whole heap better.

Any one found that to help?

Now, what dio I do about getting some sleep?

How do you mean "greedy"? OK, I suppose so. one step forward is plenty for one night.

Hello George,

Of course,   I cannot know what your expectations of going through EBRT actually were;  but if there is any consolation for you at all in knowing that what you are experiencing is pretty much par for the course, then I can confirm that it IS ...  although conscious of your present discomforts,  I take no pleasure in doing so.  With more honesty and less bravura most of us would write much the same things.  Our individual experiences differ only in the manner of one or more particular symptom's impact and degrees of discomfort thereby.

I'm not sure that doing pelvic floor exercises just before you try to void is a good idea.  It is probable that at present you are not emptying your bladder effectively and to exert extra pressure on a full bladder would seem contraindicated.  You might want to run your idea past the Med Staff ?

As they have previously commented,  I would also be advocating relaxation as the more effective technique.  Hot salt baths and water bottles helped me a lot.   Also,  perhaps 5mg of Diazepam could be trialled for a few days ?  

Best wishes for getting on top of this.

Regards

Dudley

Hello Dudley

My enthusiasm yesterday for pelvic floor exercises crashed today. I have found nothing to ease out the contents of my enraged bladder nor anything to subdue the pain that echos in the sloes of my feet. Thank you once again for being straight with me. The underplay of difficulties by the medics make me so angry and distrustful of them. They seem to play us like a fly fisherman plays with his fish, moving us on only when they think we are sufficiently ripe for it. What we need and what I get from the forum is the constant building up of realistic expectations and fortitude. I need to know I am like many, many others. Yes it hurts something cruel. Yes you will get little sleep. But we get through the treatment to the desired benefits. It is the false expectations that make it hurt and add uncertainty into the bargain.

Thank you again Dudley for your true friendship.

George. 

Well George,  nothing is for nothing when it comes to Medical Treatment.  We know this.  It would be too good to be true otherwise and any Male with a reduced flow, pain or discomfort would be seeking treatment straightaway instead of entering into a period of denial,  with varying consequences,  as most of us do anyway.

Yes,  the Medical Staff have seen it all and in general terms know precisely what we are in for.  But in fairness to them and for example,   in my case I would definitely have run more than a mile if I had known in advance what side-effects I was about to experience. I nearly did anyway just at the thought of possible ( read probable ) incontinence and impotence.  As it was, I had already been pussy-footing about with worsening symptoms and PSA results for about eight years.  And now,  my five year survival chances are between 25% and 65%.  Untreated,  I would have been gone inside 12 months from about May this year.

I am not saying that trying to adopt a philosophical approach is easy,  but it helps.   And without medical assistance where would we be ?  Living is hard.  Dying is harder.  Dying of untreated Prostate Cancer is harder still.  

It's all relative and it helps to keep a perspective.  Statistically today somewhere,   a number of people will leave home and never return,  being the victims of road accidents.  Some will be children.  We,  are in our 70's.

Enough said I guess.  Let's just tough it out and take pride in doing so.  And give thanks to God,  for all mercies received along the way;  such as pain free interludes,  a sunlit frosty morning,  a nice cuppa,  a good book,  a faithful hound and ... all the wonderful things the World has to offer us, daily.

You really are doing pretty well so far George,   it is understandably,  just a little bit difficult to appreciate it at the moment.  You will get through it all and the symptoms will abate post therapy.  And you will live a longer and better quality life than otherwise.

 

Thanks Dudley. I cannot fault those well chosen words. You may remeber the post where the side effect that is bothering me was described something on the lines of 'p*ssing razor blades' . I did think he must have had a raw deal while all the other guys were having cream teas and a game of croquet very much in line with the blurb an mantras. So no tendence for Super Hero here to bolt for the hills. NOW I find he was easing us in gently. It is nothing like razor blades. I find it id like a razor sharp band saw endlessly cutting at high speed a super sensitive bladder that endlessly heals itself to be cut anew a nanosecond later.

The only comparable pain I have had was a few years ago when having root canal treatment and the annisthetic did/could not deaden the nerve. Once we discovered that the dentist had to finish. It was like ... like ... my upset bladder only the blader goes on longer, much longer and I give repeat performances half hourly, hourly and if I am very favoured two hourly. Each one is a smash hit. Such, Dudley, is stardom. But why am I telling you this. You have been there yourself. I bet you you are glad you are through it and with no encore allowed.

Oh dear! I wonder what word or phrase I used that upset the sensibilities of the computer. The whole subject of prostate cancer is to do with unmentionable bits and functions. We must mention them and open peoples' minds to the necessity of being aware and educated and people do have an enormously wide and rich vocabulary to use, and do so with great regional diversity and directness. 

You are most unlikely to have done or said anything unacceptable at all George.  The site automatically withholds any post that mentions either Med .Practs. by name, or another web site address,  pending a pretty innocuous censor.  ( Or did I mean petty ? ).

Now,  try and get some sleep !

Aaaaaah! Dudley, with A chat to my GP over the phone, Ibuprofen at supper and Paracetamol at bed time I have had some decent sleep bearable unloads. Amazing how a bit of sleep improves ones optimism." Laighter the best medicine" Second best I think. Sleep is the best medicine.

As you say for me no EBRT encore,  but nevertheless ... it seems fiendishly clever sub-plots still abound !

You don't mean they have more ways of tweeking my bladder and sending me into ordit?

Actually no George I don't .  The body is trying to heal itself ( difficult whilst it is being irradiated daily ),  but nevertheless it is trying.  Every day that you don't feel worse,  it is holding its own.   If side-effect symptoms become more debilitating then the Med Staff can either prescribe variously or suspend treatment for a few days.  Basically though,  their treatment protocol is to give you as much EBRT as they consider you can stand.  Period.  This is because the more they irradiate your tumour, the more they kill it.  Cancer cells cannot reproduce themselves.  They can invade other cells but once killed, they remain dead.  So if they can kill them all,  you will be in remission.  And then you are left with your personal underlying physiological template which was for whatever reasons,  susceptible to cancer in the first place. These days people either concommitantly amend diet and/or exercise more  ...  etal,  to try and gain immunity.

Irrespective of that,  your body will the entire time continue to try and heal itself from the effects of the EBRT and once you've finished,  you will subsequently experience incremantal improvements,  weekly,  if not daily.  Any lasting local debility will be the result of collateral damage.  I sustained some,  but I'm not complaining ( nor suggesting vicariously that you are ).

What I was alluding to in mentioning sub -plots is that I have been diagnosed with an urethral tumour  ( that was not there at all in March and which may be a metastasis but could be,  radiation induced ),  which is scheduled for resection on 3/12.

 

Hello Dudley

Thank you for that full expansion. Today has been better, rather similar to two days ago. The Ibuprofen and paracetamol have kept the pain within my groan threshold except once this evening.

I am very sorry to learn of the urethral tumour. That is a sore blow for you. Of course the risk could have been avoided by letting PCa have its way, and you have said that was not at all am option you wanted. I understand you to have indicated that you are already of the credit side of that risk choice. Still, it does mean more unpleasantness for you.

George

I seem to have the beginnings of proctitis - mucus; loosish poo; feeling the need to pass poo when really all that was coming has come; poo feeling hot in the anus. If so I will open a new discussion for that. I would be very grateful for yuor tuition and advice in that too.

A matter of oassing interest, I had used a prohibited word and it has been rendered acceptable by the removal of the furst vowel.

No problems George.  I was in denial about the possibility of having PC for years,  so I have only myself to blame.  But, I did enjoy the intervening years and so did my Partner and,  I was never bothered with concerns about it until the symptoms became unignorable. Thanks for the kind words though.  

Oh yes,  Proctitis.  I had it acutely for about 2months.  Absolutely no fun at all.  Try:  warm/ hot salt baths,  a wrapped hot water bottle on the lower abdomen. Proctosedyl ointment and suppositories.  A Harris Dilator if you can get hold of one.  Coat the tip + 1/2inch in Proctosedyl ointment.  Add a v. small amount of 1% hydrocortisone cream.  Apply for 30 seconds ( I.e. Insert it fully,   you know where ).

Finally,  swallow pride.  ( haha ... Just kidding ! ).

Clean up self with cotton wool pads 1dry, 1moist.  

Whatever else you do/don't do,  don't allow yourself to become *constipated.

Use Gastrostop ( loperamide ) to limit number of motions, with *caution.

Avoid any iced drink and /or ice cream.

It does abate gradually ( over about 3 months in my case ). Still not back to normal yet, but ( hopefully ) getting there.

good luck.

Regards

dudley

 

 The Harris Dilator I have,  is a fixed diameter push Rectal Dilator.  Your Hospital should be able to give you one,  or point you in the right direction.

Hello Dudley,

Thank you for all that information. I am glad there are good things in the locker if I need them. It would be great if this doesn't develop further. I did have the worst of the mucus when I was using the mini-enema jell. I use water now. It gives no side effects. Now two days for rectum to settle down. Anyway, wishful thinking is not much use in this business. Reality and education are the things. I just have to deal with whatever comes up. (and some things don't do they?)

Swallow pride! that went with the biopsy. Talk about getting shafted! ! ! ! I have no hangups about placing jells, creams, strange instruments just where they are needed. 

Thanks again and wishing you a good outcome from your new O Oh!

George

Thanks, I think I can guess what it does. Another case of "Relax".

One last thing ... I'm not sure why you are continually needing to use an enema ?  If you are able to empty your bowels before you attend EBRT then, you have lessened the impact of side effects because radiation is not additionally in faeces,  where it could do more and diffuse damage over and above the intended localised damage to your tumour.

Rather than use an enema,  either get your appointments moved until after your normal evacuation routine,  or get up earlier and/or go for a walk to ensure you have at least ' been'.  But for heaven's sake George I think you could safely can the enemas.  To me,  they sound like they're doing you far more harm than good.  Certainly,  the Rad Staff at my hospital said only consider an enema if you are not evacuating daily before atrending EBRT.

The phylosophy here for the IMRT is jell for the first 10 treaments and then leave the rectum to itself for the convenience of the gentlemen. Whereas 40 miles away where fixed beam machines are used they use jell throughout. I did stop the enema at treatment 11 but found I was cchurning and windy during the treatment although it is only 60 seconds long. I resumed my water enema at treatment 13 and all became quiet and comfortable. 

In general I have found that my skin and me as a whole are sensitive to many things othes find benign. I am not surprised I have bad reactions. I just seek to manage them as best I can. I am in the habit over decades of paying close attention to my reactions. 

Thank you very much for your kind attention and thoghutfulness. I am most grateful and appreciative. I thank our Lord who brought us together. Ultimately the outcome is his.

George

O.K. my Friend,  you've obviously considered it from all angles and undoubtedly know,  what's best for yourself.   Good luck with it all George.  Hang in there.

Hi Dudly,

the waterworks became too agonising and sleep in very short supply. I had a chat with my GP over the phone. When I described my symptoms she said It was very likely an infection. Dudley, you just don't want to hear this. The GP checked my hospital record for the results of the two samples I had given. No record. Nothing daunted she asked for a specimen and left a prescription for anti-biotics and a bladder relaxent for me at reception. So I started the new pills that evening, Thursday.  There was still a lot of acute pain and lost sleep to come. Here I am on Sunday and I have relaxed. The more normal burning sensation has replaced the sharp OTP pain. I think at last I may discover what are side effects from the radiation alone.

Hello George,

I am very sorry indeed to hear about the currently acute nature of your side-effects. I was hoping on your behalf that someone as sensitive, caring and supportive as you are,  would have an easier passage through EBRT.

Well obviously that wasn't to be.  Under the present circumstances, trying to stay positive might seem difficult but the symptoms will abate once you have struggled through and currently you can take some comfort from knowing that,  if this is the effect the radiation is having on healthy cells they are not aiming at ... then it has got to be killing the cancerous ones they are.

Don't give up.

​Best wishes,

dudley

Hello Dudley, 

Yes, many thanks. I have nowhere else to go. The antibiotics are working gradually. The daily cycle is eccentric so I judge progress by the worst and the best. The best requires self control to relax throughout until checking that my bladder is empty. The worst still has me groaning and moaning but with less intensity than a few days ago. Perhaps it does not sound much like progress but I belive it is. Perhaps the best indicator is that I relaxed for several hours today. I had not realised how tense I was until I relaxed. That is not a voluntary matter but the back ground physiology. In between p'ings I am comfortable. At best the interval is 3 1/2 hours. Shortest is 15 min - 10pm to 3am. That is in the part of the cycle when the pain is worst.

So I just have to soldier on through it. Just 15 treatments to go.

Yes,  commiserations George.  Those wee small hours sound very trying indeed. ( no pun intended ).

Relaxation does sound like the key to a greater degree of comfort for you.  That being complimentary to :  walking,  adequate hydration,  salt baths,  the occasional hot water bottle, retiring early and not least,  avoidance of both caffeine and cold beverages.  Dealing with Prostate Cancer and its treatments is almost a full-time job,  isn't it ?

Nonetheless It is good to know that you are determined to soldier on ( with the rest of us ! ).  I and countless others on this site support and encourage you.

Thank you Dudley. Last night was worse than ever. I was up every 10 to 15 minutes That extended to about 30 miutes. It was 05:45 when I last checked the time, still without sleep. I woke when the alarm went off at 06:00. It was a bit much. I asked for some more help from a radiographer. I had a catheter before I went home. Blissful; I had ben retaining about 600ml. 

Yes looking after PCa is a full time job. In overtime one can learn how to live with a catether. 

Tonight I shall sleep. Only 14 treatments to go.

 

Bear in mind that the renal system continuously produces urine except,  whilst one is asleep at a certain depth and for a certain period when, it stops.  Therefore anything you can do to increase both the amount and quality of sleep you get will benefit you markedly.

Thought I'd mention that I am having my urethral tumour removed tomorrow and so, will not be visiting the site for a day or three.

Thanks Dudley. I used the 2lt overnight bag. Just as well, I emptied it once and it was full again in the morning. 

I hope all goes well. I will look forward to you joining in again in a few days.

George