Ht/RT side effects tips

User

Posted 06 Jan 2016 at 09:07

Hi, from a newbi.

After 2 years Active Surveillance, my latest Biopsy has upgraded to 4+3, and yesterday after much deliberation, I have decided to go for HT starting tomorrow, followed by RT in 3/4 months time.

I have read lots on the possible side effects, but can you guys who have experienced it already, give me any tips on how to avoid them.

I still do not have any symptoms.

Thanks.

Dave.

User

Posted 15 Jan 2016 at 21:28

I had 8 months of HT (Zoladex), with RT (External Beam with Carbon Ion boost) over the last 8 weeks of it back in 2008. Strangely I became constipated for a time, perhaps due to overcompensating for possible 'runs'. After the RT I resumed my normal diet and stools returned to normal. However, there followed a period when I passed wind this was occasionally accompanied by a very small amount of mucus. I called this 'wet farts'. The mucus was also with the normal stools sometimes. This lasted with decreasing frequency for up to about 6 months post RT. Yes I did keep some spare underpants and have some wipes readily available for some of the time but were seldom used. Overall this was not a problem for me. Like all side effects the degree varies from one man to another. Can't say how I might be affected in the long term but knowing what I know now would not put me off having RT if I went back in time. Each individual has to factor in unquantifiable but potential side effects of various treatments before making his treatment decision.

Hope it works out well for you.

Edited by member 15 Jan 2016 at 21:39 | Reason: Not specified

Barry

User

Posted 16 Jan 2016 at 10:04

Hi Guys,

Two things I found very helpfull when getting through RT don't seem to have had much of a mention:

1 - DIET, it is way back in 2008 that I had RT, but before the treatment started I was given an official NHS diet sheet recommending a low fibre diet. This was quite counter-intuitive in that it was contrary to most 'healthy eating' advice. There was a total ban on green veg, beans, fruit and salad, whole meal bread, brown rice and jacket potatoes. We were encouraged to eat white bread, white rice, mashed potates properly peeled, together with chicken, fish nothing fried, and most surprising Jaffa Cakes were recommended!

It is emphasised that this diet was recommended just for a few weeks during and after treatment.

2 - EXERCISE, my Consultant Radiologist did a research study, which showed that those blokes who carried on as normal and tried to do extra exercise such as walking/jogging etc during treatment experienced fewer side effects than those who hid under a duvet feeling sorry for themselves.

I have just finished my second spell on HT and am looking forward to this spring, hopefully as the sap rises I shall start looking at the ladies again, I have a vague memory of something called sex.

But apart from loss of libido HT hasn't been too bad at all this second time round.

Dave

User

Posted 06 Jan 2016 at 20:26

Surr, I am sorry you found RT so tiring. John had his fractions every morning on his way to work - never missed a day, went to the gym every evening and played rugby on Saturdays.

Chris, I wish we'd known about tamoxifen then but we didn't. John was refused RT to the breasts on the basis that bicalutamide doesn't cause man boobs - whoever said that was mistaken and sadly it is often permanent :-(

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

User

Posted 15 Jan 2016 at 20:50

Hello Pete48

I finished 37 RT session in November. I've not had any incontinence at all, a sore bum and peeing problems but nothing I couldn't handle.

No regrets for me.

All the best Colin

User

Posted 15 Jan 2016 at 21:10

I have 33 sessions coming up soon. I have to say although I've heard of bowel probs , the bulk of people have got through relatively trouble free. Not sure about long term. My issue is the difference between RT to an intact prostate like yours , and RT to a removed prostate area like me. It scares me that without a prostate to absorb the rays, I'll actually incur more side-effects. I have had 3 radioactive dyes injected into me at this point and in March will be having my fourth CT scan. That actually truly worries me in itself. Do you get to the stage where the treatment actually causes more cancer ??

User

Posted 15 Jan 2016 at 21:26

Hello. The radiographers are excellent at checking how you are each day and there was for me a comprehensive weekly review.
The problems you refer to , started for me about 3 weeks in. I had advance warning that something might happen with a build up of gas 'rumbly tum' and then one morning an accident - whilst I was at home.
I could have avoided this if I had taken a loperamide tablet as soon as I thought I would have needed it. The downside was that I dehydrated for treatment that day , so if it happens ,then you need to rehydrate by drinking copious amounts of water before treatment. I had several bladder scans which were fine.
But the centre were great. They've seen it all before and are able to give sound practical advice and support. And I had no further problems.
I was prescribed normacol ( sachets daily ) which were good which I took in conjunction with the daily loperamide. They worked really well.

Towards the end of the treatment there were occasions when I thought I might have an accident whilst out but never did.
Having the survival bag of spare clothes was a safety net. The only time I used the underpants was on the 34/37 fraction . By then my bladder was so irritated that I had to ask for a bottle mid way through the session.

I must stress that I was able to work for 7/9 weeks (including Christmas/ new year breaks and midweek start/ finish) and had no accidents at all whilst there. I learnt that I couldn't go far away from a toilet towards the end but I coped. And the effects wane quite quickly once the treatment finishes.
It was the fatigue I found most draining.

You learn to check out where the toilets are wherever you are and advise people that you may need to dash away without explanation.

A good friend of mine had similar experiences with radical prostatectomy . He had male nappies in boxes at his house but I think that this was exceptional.
Any treatment to the pelvic area is bound to cause upset and disruption . I had an upset with the fiducial markings 24 hours later and my friend with his biopsy.

Talk to your healthcare team - mine were very upfront with everything. They were spot on with the nature of side effects including the concern you have raised.
You'll have to decide if this inconvenience for about 5-7 weeks is worth it against any downside a RP may produce.

User

Posted 16 Jan 2016 at 09:09

Hi Pete, I am 66 and to be honest all the side effects relating to weeing and wet f***ting are minimal and just something else to be aware of especially before venturing out each day ( depends what time your treatment is) getting up earlier to sit on the loo onece,twice or three times can get over the problem and if there is a feeling to pass wind I suggest don't until sat on a loo.. Make a note of all stopping places to and from the treatment centre, the peeing seems more imperative afterwards as you will be full of water.
I finished my RT at beginning of Nov last year and returned to "normal" after 2 weeks but was told by urology nurse that it can take up to six months for the frequency/urgency to wee to abate.

From my perspective I am happy to have gone through the treatment with minimal problems.

Best wishes for whatever you decide.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 03 Feb 2016 at 18:50

Chris/Woody,

I like reading your comments re HT . Of all those that are posted here , yours are the closest to my own experiences .
Unexplained tears over both sad and happy things.
Being hot and cold - problems with sleep etc.

And yes it's best to let those around you be aware of what they could expect.

John

Show Most Thanked Posts

User

Posted 06 Jan 2016 at 13:23

Hi Dave
I'm in a slightly different boat having had a radical prostatectomy already , but I have been on HT for 3 months and am starting RT in April as Salvage treatment ( PSA 2.4 after op ).
You don't say which HT you are on as they can act in different ways to each other. I am on 150mg Bicalutamide per day. It's probably the easiest HT for side-effects. I am very very fatigued and not sleeping. Regular night sweats. Very emotional and tearful. I was impotent anyway after the op but apparently Bical affects erectile function the least.
I haven't changed anything in my life since I got PCa. Some people go on diets and do extra exercise etc. I feel I have a normal diet and walk the dogs daily. My biggest sins are meat and wine but no way would I give them up.
I hope your treatment goes well. Please post and keep us all up to date. Ask anything and download the publications for HT and RT from the site which are excellent , or phone the nurses.
Chris

User

Posted 06 Jan 2016 at 13:34

Hello Dave,

I have been on HT for about 15 months now (9 months to go I think before I come off it).

I had 37 fractions of RT in January / February last year.

RT side effects were pretty much as I was warned about: some tiredness during the treatment, cystitis for a day or two at the end of the treatment, and some change in bowel movement. Not sure of the long term side effects yet ...

HT side effects were again pretty much as expected with the addition that I am very emotional and tearful at times!

Not sure you can avoid these side effects.

If you want more detailed information send me a PM.

Martyn

User

Posted 06 Jan 2016 at 14:17

Hi Dave

I've been on HT (Prostap) since January 2013 only had hot sweats/hot flushes from time to time which have declined recently. Regarding the RT I had some soreness at the rear end which was helped by using aqueous cream, I did have an embarrassing problem with wet f***ts sometimes.

Overall there wasn't anything too difficult to overcome and I hope for the same for you.

Best wishes

Arthur

User

Posted 06 Jan 2016 at 16:10

Hi Chris j,

Thanks for reply.

I start tomorrow on 50Mg Bicalutamide, and in 2 weeks time will have 3mg Triptorelin injection, and then repeated every month.

Hopefully I will still be able to enjoy my holiday in the Algarve in April.

Dave.

User

Posted 06 Jan 2016 at 16:11

adidave, it depends on which hormone you are going to be taking but, if relevant, have they offered you a bit of RT to the breast buds to minimise the problems of man boobs and breast pain? It only works if given at the very beginning of HT so perhaps worth checking with your nurse specialist whether it applies to you.

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

User

Posted 06 Jan 2016 at 16:19

Hi Lyn,

Thanks for info. I am meeting again with the radiopherapist next week to do all the paperwork. I shall certainly ask.

Dave.

User

Posted 06 Jan 2016 at 16:32

Next week is probably too late if you are starting the hormones tomorrow. Which one are you taking?

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

User

Posted 06 Jan 2016 at 16:35

Ah, just saw your response to Arthur. I would consider phoning the nurse today or tomorrow to ask whether RT to the breasts is available.

As for the holiday to the Algarve, worth asking whether your RT can be delayed until afterwards as you shouldn't expose the irradiated skin to sunshine. We went to Lesvos and then France and then started RT the day after we got back.

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

User

Posted 06 Jan 2016 at 16:40

I was given once weekly 20 mg Tamoxifen to stop breast soreness and/or growth. Early days but so far so good.

Edited by member 06 Jan 2016 at 20:52 | Reason: Not specified

User

Posted 06 Jan 2016 at 17:20

I just wish I'd known about this site when I was in your position.!!

I experienced very quickly hot flushes and latterly night sweats after I went on Zoladex in August 2014.

I was at work when all of a sudden an enormous wave of HEAT exploded down my back from my neck and I was sweating.

My colleagues burst out laughing at my swearing and general discomfort!!!

I had fortunately told the whole dept of my situation and of what to expect. They were really great.

I found RT very difficult. I'm sorry to say that I fluffed at least 30-40% of the 37 fractions.

I was either over hydrated or dehydrated. And I was not alone. Several others had to rush to the toilet towards the end of their treatments and pretend they hadn't so they could go in on schedule. And we were all found out.!!!!

One occasion I got through on my third attempt but that was towards the end.

The point of this is to say don't worry about anything. What ever happens the staff have seen it all before.

They're not embarrassed and neither should any patient be either.

And I soon became fine with it.

Be totally honest any review meeting. About how you feel and side effects.

Do carry spare clothes. At all times. I had at least 2 spare underpants. And a large open necked bottle with a lid.

The folk I met at St Luke's were great. We all got on . And we compared our survival equipment - we all had the same!!

I have become more emotional too. Teary sometimes for no reason. But it's Ok - now.

Be upfront with your family and friends. As above tell them what you've been told to expect. They'll appreciate your honesty.

And they will support you.

I experienced fatigue too. I worked mornings only for until signed off for 2 months towards the end.

If you can't do something then don't. It doesn't matter.

Do it another time.

I was actively encouraged to go for complementary therapy.

Best move ever made. Acupuncture for flushes has really helped.

Sacral cranial for emotions totally brilliant.

A friend is going through HT and RT right now.

He has no HT effects whats so ever . None . Doesn't understand what I'm talking about. But he has seen other men sweating away wiping their brows.

Each person reacts differently. You may sail through your treatment quite fine. But there is much support around . Take it . Don't be alone.

And good luck

User

Posted 06 Jan 2016 at 18:01

I think everyone, particularly my wife wants treatment to start ASAP, and can't imagine breast RT can be arranged very quickly.

Holiday to Algarve has been built into my treatment, RT to start when i get home.

User

Posted 06 Jan 2016 at 20:26

Surr, I am sorry you found RT so tiring. John had his fractions every morning on his way to work - never missed a day, went to the gym every evening and played rugby on Saturdays.

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

User

Posted 06 Jan 2016 at 20:57

Hi adidave, I started my HT in Feb last year and had RT that finished in Nov.

Since starting HT I have gradually seen the symptoms grow with extreme hot flushes after about eight weeks and at present I get 6/8 during the day and the same at night, I also get cold/chilly spells in between the flushes so it is a case of load the clothes on then strip em off again.

I get tired easily but make myself do things, as it frustrates me to not do anything, and usually half way through I quite enjoy it.

I fall asleep watching the tv at night( never did before) and have developed small man boobs which may get bigger if I am unlucky but I suppose a bra will stop them jiggling around or hide them with a baggy jumper(when not flushing)

Had no real problems with RT except for the wet f***ts and the desperate need to go for a wee on the way home from RT sessions even though I stayed on for a while to have that last empty of the bladder but still had to stop every fifteen mins at layby's and pubs en route. My stools were very loose and often had to rush to the loo about three times each morning before venturing out. This would occur every day and was extremely "urgent" and I had a couple of accidents so be warned!

You could have a word with your GP and get a prescription for a "URIBAG" this is a small pot with a rubber bladder that can be used to wee in and has a tight sealing lid so there are no leakages. It takes about three big wee's and can be emptied when you get back home, washed out and used again.. Very useful .

Since finishing RT the urgent wee's and wet f***ts cease and my stools hav gone back to normal.

At present I still get hot flushes all the time and have been incredibly tearful, when happy and when sad the tears come for no reason, I just accept it now and all my friends and family know what to expect from me.

I am on Zoladex implants every three months which will be for next 14 months, apparently the symptoms remain after you end HT for the same length of time..

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

Edited by member 06 Jan 2016 at 20:58 | Reason: Not specified

User

Posted 06 Jan 2016 at 21:24

Lyn, thanks. I was signed off because I was exhausted and frankly I decided I had to come first. Work were very good.
My employers too were keen for me to recuperate. The RT was difficult on occasions but I lived and worked only 5 mins from each - v lucky compared with many with long journeys.

Re side effects - before acupuncture average 25-30 flushes a day. Fan on constantly at work.
Got used to playful banter from colleagues !
Wear light cotton layers - drink loads of room temperature water. Cold is bad.
Avoid alcohol.
I gave up alcohol 2 days before RT. Thought nhs spending fortune on me - don't add own goals on getting better.
Also as on HT - no testosterone - bone thinning . Alcohol interferes with calcium in urine - and being slender higher risk osteoporosis . Do not miss the booze at all.

User

Posted 06 Jan 2016 at 21:38

A small number of patients cannot manage all fractions or have to stop early. However, if it is at all possible, it is best to attend the full RT course as determined by the oncologist without breaks to gain maximum benefit.

Barry

User

Posted 12 Jan 2016 at 02:12

I am convinced that regular exercise and being fit can help counteract some of the effects of HT and RT.

Barry

User

Posted 15 Jan 2016 at 20:00

On the RT side effects, I am becoming increasingly concerned about my treatment decision. It seems that almost everybody has accidents and I'm seriously considering changing, at this very late stage, to surgery. I just can't face fouling myself. I think I could tolerate urinary incontinence better.

In any of the literature I have read up until my decision faecal incontinence hardly got a mention. I now read, in an American research paper that there is massive under recording of this issue - understandably so given that it is something you just don't want to talk about.

This forum is very honest and forthright and I think I am learning things that official literature on the subject doesn't mention. I have read of accidents, people carrying spare underpants and trousers, special disposable shorts that enable you to take them off without spreading waste over your legs.

Have I been mislead by the official literature? It seems that there is a strong likelihood if not a certainty that people suffer faecal incontinence after RT. Or am I being alarmist.

I'd love to hear from somebody who hadn't had an accident or serious bowel effects.

User

Posted 15 Jan 2016 at 20:50

Hello Pete48

I finished 37 RT session in November. I've not had any incontinence at all, a sore bum and peeing problems but nothing I couldn't handle.

No regrets for me.

All the best Colin

User

Posted 15 Jan 2016 at 21:10

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