Ht/RT side effects tips

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

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.

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

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

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.

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

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.

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.

On the low fibre diet, I was diagnosed with diverticulitis back in 2012 (apparently most people have it to some extent as they get older). A high fibre diet was recommended but they also said that your bowel might need a rest every now and then with a low fibre diet. I haven't found this but it does make quite a bit of sense. I think I'll suggest that I start this as soon as I start the RT.

Just a quick update. I have now completed 4 weeks of the HT tablets, and have had no side effects at all, yet.

I have a meeting with the Consultant at Southend Hospital on the 19th, to discuss Temp. Brachyatherpy or High dose RT.

So far so good!

Hi, the side effects will cut in soon and I am sure there will be tears for no reason whatsoever, even my oncologist said that now I know what it is like to be a woman!!

I found that, in particular, two weeks after hormone implant I was at my worst as far as emotions go and found myself crying or with tears in my eyes for any reason, even to adverts get me occasionally. As long as those around you are aware then it is easier to live with.

The hot flushes happen day and night so not much relief from them with some cold ones thrown in as well.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint.

Just noticed, over the last few days, a good side effect of HT which I haven't seen mentioned before. I am only 24 days in to bicalutamide (150 mg daily for 6 months) but I have noticed a step change in my flow. It wasn't that bad before (my PCa being mostly asymptomatic) but the stream has definitely increased in force (and even distance lol). Presumably some shrinkage of the tumour relieving pressure on the uretha?

Shame as this will probably go into reverse when I start RT in April.

Just an update of my side effects (150 mg Bicalutamide daily). Been on them 5 weeks. Hot flushes still occur but of little or no nuisance value at the moment. The slightly down beat emotional type spells have levelled off a bit but I do feel very tired a lot of the time. Just kicking in is a slight pain in the breast area but tolerable so far.

I have now got a date for the start of my 20 sessions of ERBT. This is the dose painting system that has just come out of clinical trials. Clatterbridge do seem to be very focussed on minimising side effects. I have already had gold markers inserted and, on Tuesday this week I went for my planning session. I had a catheter inserted for both the CT and the MRI scans. I gather this was done to get a clearer picture of the uretha and its position - again all down to an attempt to minimise side effects.

What I find interesting is the variation between treatment centres. A friend had 20 sessions of ERBT but no gold markers and no catheter when the scans were being done for his planning. He ended up with severe proctitis which required admission to hospital it was so bad but he is over it now.

On the Hormone Therapy I think I may be getting off lightly. The low moods are not really an issue after nearly 9 weeks. The hot flushes are tolerable and not that frequent but the breast tenderness and slight enlargement is a bit of a nuisance. I'm conscious of it all the time and although it is not that sore unless you touch it, a bit like an itch, you can't help touching it! I have noticed I am losing a bit of strength so I am trying to keep active and using some light weights to help counteract this.

It's been said many times but the variables are endless in terms of slightly different procedures between centres and definitely in the reaction to the various treatments.