Newly diagnosed - story so far. - Start here! - Prostate Cancer UK Online Community

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

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