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Newly diagnosed - story so far.

User

Posted 10 Jan 2016 at 22:33

Hello Everyone

Just thought I'd introduce myself. My name is Pete and I am 67, retired, and living in Warrington with my wife Mary. I have 2 grown up daughters and 2 grandkids.

My PCa background starts with my Dad who died aged 57 from prostate cancer in 1971. It continues with my older brother being diagnosed in 2013 and now me, diagnosed just last month.

My brother is 6 years older than me. He had a PSA of 14 and, after biopsy, a Gleason score of 9. Luckily, although aggressive, his cancer was contained within the gland. He has had HDR temporary brachytherapy with a boost of 15 external beam radiotherapy sessions and 20 months on the anti androgen drug bicalutamide. He was on this for 20 months finishing in April last year. He is doing well and the cancer is in remission.

My PSA was 7.2. An MRI scan was clear but the 12 core biopsy revealed a Gleason score of 7 (4+3). I was deemed suitable for surgery, external beam radiotherapy or HDR temporary brachytherapy (this would include 6 months on bicalutamide and a top up of 15 external beam radiotherapy sessions.

I chose the brachytherapy largely because my brother had had it and has done well. He will be my guide and mentor! This Wednesday I am going to see the oncologist and, I gather, this is when my hormone therapy will start.

The diagnosis came as a blow but absolutely no surprise given my family history. I have to say, though, I am virtually asymptomatic. Yes I go a bit more often but have never had a weak stream or having to get up in the night. I am really glad I went for the PSA test (I had had one 4 years previously but that was normal).

My treatment is being done by the team at Clatterbridge Cancer Centre on Merseyside.

User

Posted 11 Jan 2016 at 12:39

Hi Johsan

I didn't ask for the precise reading of my first PSA test in 2011. It's a bit like blood pressure reading - you always seem to have to ask them for the exact figure.

Lesson here for everybody - ask what it was. When I had my most recent test in 2015 my new doc (we had moved house in the interim) couldn't find it in my paper records. It's relevant because I don't know if the 2011 reading was at the top end of normal. No DRE was done on that occasion.

User

Posted 12 Jan 2016 at 15:32

Hi,

Welcome from me. I had Brachytherapy and it's not too bad. Needles hurt a little but they'll probably give you an epidural. The radiation treatment afterwards was 5 weeks and also not too bad. You are having or will have HT (Zoladex) before and after. I have just finished 2 years. Doctors are great but they seem to prefer to give you information a little at a time. They did not prepare me for the fatigue and aches and pains and emotional up and downs that Zoladex gives you. In my case a fatigue express train hits me about 3 pm every day. This (I am told) will go on for about 6 months. But we can keep going.

Best of luck.

Edited by member 12 Jan 2016 at 15:32 | Reason: Not specified

User

Posted 22 Jan 2016 at 18:59

It's all voodoo Pete
Think men with loincloths sat round a fire with bones through their noses. I'm increasingly aware from reading on this forum that Oncologists have their own little recipes based on standard treatment protocols with their own personal experience and results. It's quite mind boggling some people on 2 yrs HT , others 6 months , varying types of HT , radiotherapy dose rates etc. Trial criteria, scan criteria etc etc. But heh they all trying to save our lives the best way they know how. I just wonder how effectively all the information is shared around the country and its experts. For instance I was dry almost immediately after my prostatectomy , and my surgeon was trying something new. Apparently I was the fifth in a row virtually instantly continent. I'm hoping that technique is getting shared asap for the good of all mankind.
I guess with HT we are all different animals to start with so it affects us differently with mood and physicality and desire etc. Good luck Pete
Chris

User

Posted 01 Feb 2016 at 14:51

I've become very used to HT and its effects - sadly.

I was told last week that I have to stay on HT for at least a further year, so at least until August 17.

What you're experiencing is exactly as I found it. However you start to accept it as your way of life and become used to dealing with the side effects.

If you're ' flushing 'a quick release is to gently lift up your shirt to one side to let the heat out. Or as I do just strip of my jumper double quick.

I continued to drink alcohol during HT until 2 days before I started RT and have not gone back to it. I surprised myself by not missing it at all. But then it was my choice.

When I drank alcohol the flushes were far far worse.

Avoid caffeine too.

Everything else you refer to seems quite normal in our situation and is almost the same as my own diet.

It's good you're retired. I worked through RT until the final 2 weeks and had 2 months off work. On going back I noticed that stress at work was evil for the flushes.

You can pace your day without having to worry about work.

I know what you mean about fuzziness. About 2 weeks in on RT whilst on HT , I could not cope with looking at the 2 computer screens on my desk at work.

Everything seemed blurry . Apparently this not considered unusual by the radio therapy reviewer and was told you'll become used to it. I did.

And excercise is good too on a daily basis. Even at my lowest points from both fatigue and low emotions, I still walked every day and gardened as I could.

I was unable to play tennis though, the risk of being ' caught short' was potentially embarrassing and also in the end I did not have the energy.

But I'm back now to where I used to be.

The teariness/ emotion is very normal. You'll see from many previous posts that many of us are in that position.

Have you been advised about acupuncture ?

I delayed considering this but everyone involved with my treatment actively promotes comp therapy.

Acupuncture for me has really helped with the flushes . I was a real doubter to begin with but have subsequently changed my mind.

Anyway, keep going. You're doing fine . It's worth it in the long run.

And you know we're all here for you.

John

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 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 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.

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User

Posted 11 Jan 2016 at 00:41

Hi Pete

Gosh your family is no stranger to PC. Wonderful news 're your brother. Hoping your treatment goes well.

Take care.

Cathy 💗💗💗💗

User

Posted 11 Jan 2016 at 02:14

Hi Pete,

Welcome. I'm sorry you find yourself here but it's a great place for support.

I just wanted to wish all the best for your chosen treatment.

Steve

User

Posted 11 Jan 2016 at 06:03

hi pete

welcome from me, you will not doubt have a lot more info on PCa then alot of us on here, best wish's to you and your brother with the treatment, keep us informed

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 11 Jan 2016 at 07:42

Hi Pete
You sound to have this well under control and I personally like your treatment path which I was offered but was then removed as my cancer was too aggressive. But after radical surgery I now need HT and RT anyway as the post-op results were sh***e .
Really sorry you are on this journey but interesting to see how you get on , and obviously the best of luck .
Best wishes
Chris

Edited by member 11 Jan 2016 at 10:12 | Reason: Not specified

User

Posted 11 Jan 2016 at 09:18

Hello Pete and welcome from me too.

You sound like you will already have a lot of family support but we're here if you need us.

Just curious (alright - nosey !) but when you had a PSA four years ago and it was "normal" what as the reading and was 4 years ago the last test?

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

User

Posted 11 Jan 2016 at 12:39

Hi Johsan

I didn't ask for the precise reading of my first PSA test in 2011. It's a bit like blood pressure reading - you always seem to have to ask them for the exact figure.

User

Posted 11 Jan 2016 at 13:26

A lesson indeed.
If you have a starting point then you can see when it increases.

"Normal" in a doctor's eyes can e very elastic

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

User

Posted 11 Jan 2016 at 16:09

Hi Pete
Welcome from me too.
Your post is refreshing in that you have made a positive defined treatment path based on the knowledge of you and your family plus no doubt lots of research.
It must be very settling to have a brother whose path you can follow and whose experiences you can refer to.
Unfortunately until one has PCa you really don't really understand the mental and physical effects of the disease and having a brother who you can talk with must be so helpful.

Everyone here also has many differing experiences and we are all here to help with anything bothering you and generally at any hour. Quite a few of us are around in the middle of the night.

I wish you all the best with your treatment.

Paul

User

Posted 11 Jan 2016 at 17:18

Thanks everyone for the warm welcome. I'm sure as I get further into my journey I'll need the support and outlet that communities like this can bring.

User

Posted 12 Jan 2016 at 15:32

Hi,

Best of luck.

Edited by member 12 Jan 2016 at 15:32 | Reason: Not specified

User

Posted 12 Jan 2016 at 18:50

Hi Pete

Welcome from me too, it's certainly the place for answers to questions you may have.

I recently had to make the choice of treatment, which is difficult in itself, finally settled for open surgery with the possibility of RT afterwards. Comfortable with my choice.

Keep posting your journey.

Sandy

User

Posted 12 Jan 2016 at 21:52

Hi PETE,

My husband was diagnosed in oct 2014 with similar figures to yours (although his Gleason was upgraded on pathology to 9). My father was diagnosed in 2001, and I agree that it's an easier path when you have done knowledge.

Good luck to you

Louise

User

Posted 22 Jan 2016 at 14:31

Just a little update. So far I have taken 4 bicalutamide tablets (150 mg) and I think some of the side effects are just beginning to kick in. Bit tired but also I might save on razor blades. Noticeable slowing of beard growth.

User

Posted 22 Jan 2016 at 15:05

Hi Pete
Bical knocked me flat for two weeks. Then I felt fine for a good while. Now at least 4 months into it I am very fatigued , lots of muscle loss and very emotional and irritable. No boobs or soreness. No hair issues. I'm still horny haha. Keep in touch and good luck
Chris

User

Posted 22 Jan 2016 at 17:46

It really does seem as if everybody is different in their reactions. I was out with my walking group yesterday and one of my mates was saying he didn't get the sore boobs or any real mood swings but found he was very tired and he lost a lot of mental sharpness. He couldn't even read the footie news in the paper!

He also said he started EBRT just a month after starting on the bical - that seems quite quick but maybe his prostate didn't need shrinking down too much.

User

Posted 22 Jan 2016 at 18:59

User

Posted 22 Jan 2016 at 21:20

The uros and oncos get together fairly regularly I think - John's uro goes to an annual PCa conference (I think organised by PCUK but I could be wrong) and when Jamie was asked this question at M-O-T-S, he had just been to a national conflab with his peers where they had discussed the outcomes of the early chemo trials. Medics have to have a certain number of days professional development every year to maintain their registration with the GMC so although not all the training / conferences will be about PCa, I think the good docs ensure they are up to date.

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?"

Edited by member 22 Jan 2016 at 21:21 | Reason: Not specified

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

User

Posted 01 Feb 2016 at 12:42

So, two weeks on the HT (bicalutamide 150 mg). Not as bad as I thought although I'm acutely aware that these are early days and I have another 22 weeks to go. Had the following:

1) I am definitely lacking a bit of energy - nothing serious but reckon important to keep exercise up.
2) I feel, mentally, a bit fuzzy. Definitely a bit of sharpness gone.
3) Occasional low mood - slightly emotional but nothing I can't cope with so far.
4) Hot flushes. Not that often but triggered by alcohol. Amazingly quick reaction as well. Just had one glass of wine with evening meal last night and the reaction was almost instantaneous - the alcohol couldn't even have got into my blood stream. Not just a one off either. The 3 or 4 I've had have all been triggered by alcohol.

I'm keeping up with the complementary stuff - green tea (about 2 cups a day), pomegranate juice every day, severe restriction on dairy although not complete elimination. Red meat only once a week and only 100 grammes.

User

Posted 01 Feb 2016 at 14:51

I've become very used to HT and its effects - sadly.

I was told last week that I have to stay on HT for at least a further year, so at least until August 17.

What you're experiencing is exactly as I found it. However you start to accept it as your way of life and become used to dealing with the side effects.

If you're ' flushing 'a quick release is to gently lift up your shirt to one side to let the heat out. Or as I do just strip of my jumper double quick.

I continued to drink alcohol during HT until 2 days before I started RT and have not gone back to it. I surprised myself by not missing it at all. But then it was my choice.

When I drank alcohol the flushes were far far worse.

Avoid caffeine too.

Everything else you refer to seems quite normal in our situation and is almost the same as my own diet.

It's good you're retired. I worked through RT until the final 2 weeks and had 2 months off work. On going back I noticed that stress at work was evil for the flushes.

You can pace your day without having to worry about work.

I know what you mean about fuzziness. About 2 weeks in on RT whilst on HT , I could not cope with looking at the 2 computer screens on my desk at work.

Everything seemed blurry . Apparently this not considered unusual by the radio therapy reviewer and was told you'll become used to it. I did.

And excercise is good too on a daily basis. Even at my lowest points from both fatigue and low emotions, I still walked every day and gardened as I could.

I was unable to play tennis though, the risk of being ' caught short' was potentially embarrassing and also in the end I did not have the energy.

But I'm back now to where I used to be.

The teariness/ emotion is very normal. You'll see from many previous posts that many of us are in that position.

Have you been advised about acupuncture ?

I delayed considering this but everyone involved with my treatment actively promotes comp therapy.

Acupuncture for me has really helped with the flushes . I was a real doubter to begin with but have subsequently changed my mind.

Anyway, keep going. You're doing fine . It's worth it in the long run.

And you know we're all here for you.

John

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.

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

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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