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Newly diagnosed - story so far.

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User

Posted 01 Feb 2016 at 16:27

I think the idea of formulating a list of questions is a brilliant idea.it would really help people. In my line of work i am often asked to present evidence of my CPD.Keeping up on the latest info and research in my opinion is essential. I would like to see all GP'S doing the same.

Perhaps that is something we should add to the list of questions a newly diagnosed man could ask his consultant - "when did you last attend any CPD or conference on the most recent developments in treatment?"

Thanks for this Lyn.

User

Posted 01 Feb 2016 at 17:22

Pete ,

Just re-read one of you posts.

I have had a beard for decades and have not noticed any change in growth since being on HT.

I lost all my 'downstairs hair' during RT - all there one day and gone the next - when did that happen? - but it grew back within 6 months of finishing .
Just wish I could regrow the some of the hair on top though !

John

User

Posted 01 Feb 2016 at 21:54

Hi John

On the beard thing it's not that noticeable but I am seeing less whiskers in the bowl after shaving. Not noticed any loss of body hair yet but I have more than enough to spare!

I meant to add I haven't experienced the breast tenderness yet but, speaking to my brother, he seems to recall that didn't kick in until a little way down the line. He was on bical for 20 months.

User

Posted 05 May 2016 at 17:52

Thought I'd update my story.

I have been on hormone therapy (bicalutamide 150 mg daily) for over 15 weeks. Initially I thought I was going to suffer quite badly in that I started to feel quite depressed but, happily, this has passed. I get hot flushes but these are not too bothersome - about 1 a day. The side effect that gives me most annoyance as it were is the breast tenderness. There is some slight enlargement as well. As my oncologist says I will only be on these for six months they do not normally intervene and I am happy with that.

Having initially opted for High Dose Rate Brachytherapy I switched to "dose painting" radiotherapy. This is delivered over 20 sessions as opposed to the more normal 37/38. It came out of clinical trials recently and is not available at all centres yet.At Clatterbridge where I am being treated, they also insert gold markers into the prostate to enable better targeting. The idea is they deliver a much stronger dose to the tumour/tumours and less to the surrounding areas. I have had 8 of the 20 sessions and the side effects are as follows:

Fatigue - I find I need to have a nap when I get back from a session.

Bowel - as yet very little. I am more windy however and I think, if anything, I am slightly constipated.

Bladder - frequency has increased a little and the flow is slightly less powerful.

All the above may get worse. As regards erections, no real problem here although I must admit my libido has dipped quite a lot.

I have also had my first "Rad/Led" clinic - this is where a radiographer discusses all of the above and, if necessary, refers you for treatment to ameliorate any of the above. In my case the symptoms are mild but that may well change.

User

Posted 05 May 2016 at 18:42

The Rad-led appointment sounds a great idea to me. Glad you are coping well.

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

User

Posted 24 May 2016 at 12:41

So - an update. Yesterday I had my last (of 20) EBRT sessions. I remain on bicalutamide until early July and the next milestone will be an appointment with the oncologist about 8 weeks hence. I have a form to request a PSA test at my local hospital a week before I see the onco.

Strange but not unusual feeling - I think I might miss the radiographers (a good humoured and supportive bunch). My brother felt the same. I guess part of it is that you got into a routine and now you are on your own to an extent (although they are contactable). The other slight downer is that any side effects might get worse before they get better.

So what side effects have I had?

1) Hormone Therapy

Mild hot flushes but actually decreasing. Early doors I had some very low spells but these have disappeared. My breast area is sore, however, and there has been some enlargement. I can manage this though.

2) Radiotherapy

Really getting the urinary issues now and am taking tamsulosin. It's mainly increased frequency and slight discomfort when peeing but entirely manageable so far.

Bowel wise, one episode of diarrhoea but the main issue has been a sluggish gut. I'll settle for this and I think I will be able to maintain a reasonably high fibre diet. I think you can almost sense what causes issues so I am avoiding stuff like cabbage, tomato skins and pips and also fruits like grapes.

Tiredness - it can be difficult to separate out the radiotherapy tiredness from that caused by hormone therapy but I do get tired. Naps help. The thing that has crept up on me is feeling OK, starting something and then quickly running out of steam.

So, to sum up, I think I am getting off lightly - things can kick in later so I gather but so far so good.

User

Posted 24 May 2016 at 13:42

Pete,

Great news you've finished your treatment at the RT centre. I recall my last day there when several of the radiographers and support staff came to say goodbye to me. I'd been amongst them for a period spanning 9 weeks and was not always their model patient. So I think they gathered together to ensure I left the premises and changed the locks after I left !

It felt strange the following few days not having to use the enemas and drink the 450 ml of water at a prescribed time too. The RT fatigue wore off for me after about 6 weeks but I still had and still have HT fatigue from time to time which is different.

One huge advantage you have is that you're retired . For me , I had been signed off work for the final 2 of the 9 weeks span and it was knowing when it would right for return to work which proved tricky to judge. I probably went back too soon - 6 weeks later on reduced hours and found it draining . But many do not have any time off work at all and seem to cope. We're all different.

I still keep in contact with one of the patients and infact we're meeting for lunch and a natter next week. He's not a member of this site and I think he likes to check that how he feels is as I feel and am 16 months later.

Good luck with your recovery, I too had some low spells and put this down to the HT but they are very and far between now, to almost nonexistent.

John

User

Posted 10 Aug 2016 at 22:00

I've recently updated my profile with recent events. In brief I have finished both the RT and the HT and the side effects have not been bad at all although I still get tired. I was on Tamsulosin for about a month but that was all I needed. Mild but entirely manageable bowel effects.

First PSA after treatment - 0.1ng down from 7.2 on diagnosis so all good. I have been warned it may "bounce" upwards a bit at my next review in early October as the bicalutamide wears off (I finished that in early July).

User

Posted 11 Aug 2016 at 08:33

Glad it's done and dusted with Pete and great news about the PSA.

We went the Brachytherapy route and were also warned about the bounce but so far so good.

Keep well

We can't control the winds - but we can adjust our sails

User

Posted 11 Aug 2016 at 09:45

Good to hear that things are going in the right direction.

Hopefully I will start my RT in September so good to hear others experienceso.

Sandy

User

Posted 19 Jul 2017 at 14:29

A long overdue update. I have had 3 PSA readings since my treatment finished:

1) 0.1 - first reading after treatment - August 2016.
2) 0.2 - second reading - October 2016
3) 0.7 - third reading - May 2017

The onco seems pleased. I won't see her now until May 2018 but I will have a PSA reading in this November - this will go on the file I assume to be considered along with all the others. I was a bit concerned about the upwards trend but there is obviously a bit of a prostate left so as this recovers an upturn is to be expected so I am told.

Other developments - well no real urinary problems to speak of and the bowel issue is now manageable. I have worked out what to do diet wise if I have to go out early in the day - usually for my monthly walk with former colleagues - and I haven't been embarrassed yet. I have taken immodium occasionally as an insurance!

Still get tired but that could be old age. In the bedroom department I can and do get erections. The odd thing is that I ejaculate very little fluid but still get the sensation of orgasm. I'll settle for that.

User

Posted 19 Jul 2017 at 15:22

Glad that your PC progress is upwards and good news on all the personal fronts. OK, some of it could be better but......

We too have just been told that the next appointment is annual. John did ask our GP recently if he could have an interim 6 monthly PSA test only to be told that the hospital has written he will be reviewed annually and they must ask for annual tests for a reason.

Couldn't be anything to do with GP budgets I suppose !! Ah well, it was a cheeky request and didn't expect much else I suppose. He readily gave him his normal prescription for Sildenafil and said he has noted the hospital's recommendation re Cialis so at least he has got that on record if John wants to go that route.

Good luck and speak to you in a year eh!

We can't control the winds - but we can adjust our sails

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