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A New Chapter

User
Posted 18 Apr 2016 at 14:58

Hi,

I start a new chapter in my life when I'm due to end my treatment at the end of June following two years of Hormone therapy and four weeks Radiotherapy. 

It's been hard going at times, especially in the last couple of months where fatigue has been overwhelming but I was looking forward to it finishing.

Last week, I saw my GP, following a day in hospital last Tuesday and he thought I should have a complete set of blood tests done.  He added a PSA test to the request as I mentioned it was November since I last had one. 

I rang this morning to see if the results had come through, hopefully that the downward tread since radiotherapy would have continued to an even a lower figure.  In November, my PSA was 0.027.  The results today were 0.043.  The first rise I've had for 18 months.  I was a little disappointed.  I know they can vary a bit so perhaps I shouldn't be concerned but my GP wants to see me about my other blood results so I'm curious why that would be. Hopefully nothing to worry about (easier said than done).

Steve

Edited by member 18 Apr 2016 at 16:28  | Reason: Not specified

User
Posted 21 Mar 2017 at 01:04
Hi,

So pleased to have completed the Reading Half Marathon on Sunday, the first one I've competed in for over 30 years. A very slow time (3hrs 14mins 06secs) but the only thing that mattered was finishing ok and not taking any chances with my heart.

It brought back memories of why I used to do these, it's so much fun.

I'm suffering now with aching muscles and the worst blister I've ever had, on my ankle, but doing it was so worthwhile, in spite of the pain.

There were times, after my heart attack, when I thought I would never be able to do one of these again. But this proves to me that everything's possible, if you want it enough.

Thanks everyone, especially my wife, for the support you have given me throughout everything.

Steve

Edited by member 21 Mar 2017 at 01:07  | Reason: Not specified

User
Posted 10 Jul 2019 at 08:45

Hi, 

I needed a bit of good news, after the way I've been feeling recently but I wasn't expecting this. 

After being told by my oncologist that she didn't expect my PSA to fall until she added additional treatment, my latest results show my PSA has fallen from 2.6 to 2.3 !

It's the first time my PSA has fallen since my first test after restarting treatment last year.  Since then, when the result was 0.775, all six tests had shown an increase.

It would be nice to think this would continue for a while. 

Steve 

 

User
Posted 23 Apr 2016 at 10:50
Thanks,

Chris, I don't think I will joining in as I'm finding it difficult to run at the moment. My energy levels are really low. I'm being checked out by the hospital but really need to have the Cardiac MRI scan.

Chris J, feeling good about being able to do some of my work for PCUK, they've just asked me to be their photographer for the London to Amsterdam Cycle Ride in June, so that should be interesting.

It feels good to feel that I might be doing something worthwhile.

Thanks guys.

Steve

User
Posted 17 Feb 2017 at 23:36

Hi,

Finally discharged from hospital this evening.

I did the Treadmill Test this afternoon.  I beat my previous best times. 11 minutes 25 seconds, during a difficult test where the speed and inclination of the treadmill increases every three minutes. You're not allowed to run, only walk, so it really pushes your heart rate to it's limits.

I was really pleased with how I did but when the results were reviewed by the consultant, he decided that they showed I did have a problem with my right coronary artery. It may be starting to block again (for the third time!). It's minor at the moment but he wants to see me again in two months time to decide if I need another operation. 

The good news was that he did give me the go ahead to do the half marathon.

It's good to be home.

Steve

User
Posted 06 Mar 2017 at 19:47
Hi,

Just had my results from a PSA test done last week. I'm really pleased, they have increased but not by as much as I suspected they would.

The figure has risen to 0.21 from 0.136 three months ago.

I'm happy with that.

Steve

User
Posted 01 Jan 2018 at 12:39
Good luck with the run Steve and happy new year. Your comments about seeing your Grandchildren grow up certainly resonates with me. I have a 4 year old Grandson that I dote on and found on Xmas day that I have another one due in June. It breaks my heart that I may not see the 4 year old become a teenager or the new one walk/talk etc. I hate this f%%%%%%g disease with such a passion!
User
Posted 18 Apr 2016 at 14:58

Hi,

I start a new chapter in my life when I'm due to end my treatment at the end of June following two years of Hormone therapy and four weeks Radiotherapy. 

It's been hard going at times, especially in the last couple of months where fatigue has been overwhelming but I was looking forward to it finishing.

Last week, I saw my GP, following a day in hospital last Tuesday and he thought I should have a complete set of blood tests done.  He added a PSA test to the request as I mentioned it was November since I last had one. 

I rang this morning to see if the results had come through, hopefully that the downward tread since radiotherapy would have continued to an even a lower figure.  In November, my PSA was 0.027.  The results today were 0.043.  The first rise I've had for 18 months.  I was a little disappointed.  I know they can vary a bit so perhaps I shouldn't be concerned but my GP wants to see me about my other blood results so I'm curious why that would be. Hopefully nothing to worry about (easier said than done).

Steve

Edited by member 18 Apr 2016 at 16:28  | Reason: Not specified

User
Posted 18 Apr 2016 at 15:41

Hi Steve

I think you have hit "ultra-sensitive psa test anxiety". You are down at such low levels of measurement that something like the time of day that you had the blood sample taken might alter the result. My GP (who I trust) is happy that any result under 0.1 is treated as effectively unmeasurable.

In Wales, the NHS is desparately short of funds, so we only have the less sensitive PSA test. As long as I keep clocking up <0.1, I'm happy and I can reserve my stress levels for other things. All the same, the family can tell when I am in the waiting period between each blood test and the result - that bit of anxiety doesn't go away!

If you want something to stop you worrying about PSA, start supporting Leicester City.... or Lewis Hamilton.... or Andy Murray.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 19 May 2016 at 02:24
Hi,

Thanks for your messages.

Starting to feel anxious about the outcome of the Cardiac MRI Scan l'm due to have on Sunday. I suppose I feel worse because I've waited so long for it. If it reveals that I'm suffering further problems with the arteries then I may face the possibility of further treatment not only this year but in future years. If no problems are found, it raises the question of what else could be causing the total lack of energy and severe breathlessness. I've suffered with fatigue during the last two years of HT but never as bad as this.

I haven't slept well the last couple of nights, which doesn't help.

Hopefully, taking part in a planning session with PCUK later today about my role as the photographer for the London to Amsterdam Cycle Ride in a couple of weeks time will take my mind off things.

The trip should be fun providing health issues don't get in the way of me going. Feeling that, somehow, you are helping with the work of the charity really helps raise your spirits.

Must try and sleep now.

Steve

Edited by member 19 May 2016 at 02:32  | Reason: Not specified

User
Posted 22 Jun 2016 at 16:18

Hi,

I've just had the best phone call ever!

One of my oncology support nurses has just rung me to say that my oncologist wanted me to know that my Bone Scan & CT Scan came back negative for cancer!!!  Instead of going for my July 5th results appointment, I don't need to go until next December! 

I'm so relieved, I could cry.  I probably will, why not.

Steve

 

User
Posted 23 Jun 2016 at 14:38

Great news Steve. Very pleased for you. You can rest easy now. Waiting for the BREXIT result may be a bit stressful though .

Cheers
Georgina

User
Posted 25 Jun 2016 at 06:25

Morning Steve.

Well firstly, real friends look out for each other and even though we are mostly virtual friends on here the main word is "Friend" so I personally would have been disappointed had you not felt the boost we all try to give, especially on a "down" day.

Guilty - Don't you dare. I mean it !

Guilt is reserved for wrongdoing and getting a good result from treatment you have undergone (and that does appear to have worked brilliantly) doesn't come under that heading.

Enjoy the new freedom from treatment. Try not to worry about the cancer coming back because it will put a damper on today's joy.

You (and your family) have worked hard at the treatment side to get where you are now.

I cannot imagine anyone on here, be it a man undergoing his own trials and tribulations with his cancer treatment, or any of us partners, being jealous of your news. Envious - yes. Encouraging - definitely.

Good news from any man on here is like a beacon of hope and is the proverbial light at the end of the tunnel and you have provided the in bucket loads.

Hopefully your fatigue will lessen with time and you can go back to a more normal way of living.

I wish you well my friend, really well so don't let me down!!

************

Edited by member 25 Jun 2016 at 06:27  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 24 Jul 2016 at 04:19
Hi,

One month today, my Hormone Treatment will end.

It should have been at the end of June but my GP decided to give me a 12 week implant rather than the 4 week one without telling me.

I was cross when I found out because for months I've struggled to cope with increasing fatigue. Another couple of months before possibly beginning to slowly regain some energy, wasn't something I needed.

I'm counting the days.

Steve

User
Posted 21 Oct 2016 at 10:49
Hi,

A very interesting evening at Kings College in London last night.

Kevin Webber (Irun) was giving a talk about how being diagnosed with Cancer has changed his life and how his love of running has helped him cope with an incurable diagnosis.

Highlight of the evening was his experiences of running the World's toughest race, the Marathon Des Sables, across the Sahara Desert.

Kevin has raised a huge amount of money for Prostate Cancer UK and has shown that even with the worst diagnosis, you can still achieve your goals, if you have determination and Kevin certainly has that. An inspiration to us all.

I took photos of the event. If you're interested seeing these, please visit my Facebook page. You can find it by searching for "Nikon Steve"

Have a good weekend everyone.

Steve

Edited by member 23 Oct 2016 at 02:40  | Reason: Not specified

User
Posted 17 Mar 2017 at 05:06
Hi,

Two days to go before I take part in the Reading Half Marathon.

Hopefully trying to raise funds for Prostate Cancer UK.

Steve

User
Posted 17 Mar 2017 at 18:37

Hi,

Thanks for your "Good Luck" messages.

If anyone is able to spare any money for a donation, I'd be very grateful.

https://www.justgiving.com/fundraising/Nikon-Steve

Thank you for your help.

Steve

User
Posted 01 Jan 2018 at 06:26

Hi,

Thanks for your replies to my messages.

Tony...Having hormone treatment definitely affected my ability to take exercise, especially running.  I found it really difficult to cope with the fatigue I was suffering.  I'm sure I will find the Reading Half easier to handle than the last time.  I was a very active runner at one time but since my cancer diagnosis, my heart attack and ongoing heart problems I have found it so hard to continue exercise like I used to.  Good luck in your races, your fitness can only help your treatment.

Barbara...Hormone treatment seems to have worked well for your husband and it would be nice to think that I would be able to enjoy "Hormone Holidays" too, but it took me over a year after stopping HT for the effect of my therapy to wear off.  I think that what was disturbing was that my PSA was rising even while under HT.  I know it's not the end of the road as far as my treatment goes and I could live as long as your husband but it's more of a feeling that my chance of a cure may have gone forever.  I could be on a new journey which may end with my death.  I would have liked to have lived to see my grandkids grow up.  What's happening now could mean that would never be possible.

Steve

Edited by member 01 Jan 2018 at 06:33  | Reason: Not specified

User
Posted 14 Mar 2018 at 15:36
Thank you everyone for your kind messages. They help a lot.

Good Luck to Arthur, Chris and Ian with your upcoming tests and scans.

You are a great group of people.

Steve

User
Posted 14 Mar 2018 at 15:45
Hi,

I was going to have my PSA test tomorrow, Thursday (15th) but suddenly remembered it was "The Ides of March".

Anyone who studied Shakespeare at school would know why I would want to avoid that date. So I'm at the hospital now, waiting for my blood test.

Steve

Edited by member 14 Mar 2018 at 15:49  | Reason: Not specified

User
Posted 22 Mar 2018 at 11:15
Steve

Sorry to hear about the rise but at least we are both still here to moan about it. Keep smiling mate.

Thanks Chris

User
Posted 08 Jan 2019 at 22:18

Steve,

l’m sorry to see your latest update, I hope and pray that you will receive the treatment you need to get your PSA back under control and the outcome is more positive for you.

Best wishes,    Arthur 

User
Posted 22 Jun 2019 at 09:11

Hi, 

Fortunately we're only moving a few miles away into a retirement complex.  Not the first place we would have chosen but I feel it will be much better for my wife when I'm no longer here.

Steve 

User
Posted 18 Apr 2016 at 18:47

Know what you mean. Last year, testosterone virtually zero, so on Testosterone Replacement Therapy, this year, thyroid too low so pills for that and now have to see haematology because my full blood count is too high. Good grief, falling to pieces.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 18 Apr 2016 at 18:59
Steve

As T say PSA is still low, but I know how you feel, any rise gets the brain working overtime. Hope the other bloods are nothing major.

Thanks Chris

User
Posted 18 Apr 2016 at 20:58

Wait to see what the GP says.
It is natural to worry, so it is allowed, and you don't need to worry about that reaction!
Best of luck.
Henry

User
Posted 23 Apr 2016 at 22:08

Not long now before the end of HT and increased energy as it's effect diminishes.

Have a great day tomorrow - will be watching on TV.

Barry
User
Posted 24 Apr 2016 at 17:37

Hi Steve
I'm very envious also that you're coming off HT. The fatigue really does get to you.

I've just had my 6 th 12 weekly Prostap jab and whilst I'm still running I'm struggling to do much more than a 10k.
I have to say though that after I've run that I do feel recharged so exercise for me seems to help.

I hope everything goes well for you and look forward to you reaching the "cured" camp.

Paul

Ps Hope you enjoyed photographing the London Marathon

User
Posted 29 Apr 2016 at 07:27

fingers x steve it all goes to plan

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 29 Apr 2016 at 10:59

Hope all goes well for you
Very Best
Gary

User
Posted 29 Apr 2016 at 13:50
Steve

Hope all goes well with the scan.

Thanks Chris

User
Posted 29 Apr 2016 at 16:24
Another wait Steve, til 22 nd May, but I hope all goes well for you and they can get to the cause of the heart problems.

Sounds like you are still feeling quite upbeat, good for you!

ATB

Alison

User
Posted 29 Apr 2016 at 20:27

Steve
Wow I'm not surprised if yore feeling upbeat.
Heart scans in May hopefully will show all is well and coming off HT in June well don't we all want to be off HT.
All the best
Paul

User
Posted 13 May 2016 at 19:47
Steve

I think we have both had an "interesting " two years, let's hope the next two years turn out to be good but uneventful. Take care.

Thanks Chris

User
Posted 13 May 2016 at 22:00
Hi Steve

Maybe 13 is your lucky number. Just think if you hadn't had those tests things might have turned out even worse.

I can understand your feelings though as I always think similar on my "anniversary".

Sending you my best wishes.

User
Posted 13 May 2016 at 22:39

Good luck for the 22nd Steve. I'll be thinking of you and keeping everything crossed.

I'm not surprised you're exhausted. A combination of HT, anaemia and stress is not a good cocktail.

Best Wishes to you as usual

We can't control the winds - but we can adjust our sails
User
Posted 14 May 2016 at 01:06

Hi Steve
Let's hope the next two years will be better, they can't be any worse than the last two. Keep on going, you will do that half marathon yet.
All the best
Paul

User
Posted 14 May 2016 at 07:47
Steve,

I'm approaching my second anniversary since dx too. But I think my journey has been slightly easier than yours. However you will soon be released from HT whereas I have a further year to go.

Good luck for the 22nd.

John

User
Posted 15 May 2016 at 12:43
Hi Steve thinking of you on the 22. Jx
User
Posted 19 May 2016 at 07:22

Two forty five in the morning and you're still up and on the computer!! Hope you got some rest. I do know what it's like to be awake when the rest of the world seems to be able to get its head down. It's a very lonesome feeling.
It also allows the mind to wander, probably down paths you shouldn't be looking at because there are no distractions.

Hope the planning sessions go well. Yes it's something to focus on as well as helping PCUK, but this is for you Steve.

It's what you do, what you are good at. I know you'll give it your very best shot. You'll need to find the strength and energy from somewhere but I'm sure you'll do it.

Go Steve Go !!!!!

We can't control the winds - but we can adjust our sails
User
Posted 19 May 2016 at 07:49

hi steve
hope you managed to get back into the land of Nod, the bike ride gives you a good focus at the moment have you posted any pics from the London marathon

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 22 May 2016 at 07:10
Hi Steve,

Wishing you all the best for today, hope it goes well

Arthur

User
Posted 22 May 2016 at 07:44

Hi Steve best wishes for today and I hope all goes well

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 22 May 2016 at 07:50
Steve,

I hope that all goes well for you today

John

User
Posted 22 May 2016 at 13:26

Hi,

Home now, following the Scan.

Scan seemed to go Ok but quite hard going.

Made me feel really tired, going to have to have a sleep before giving more info.

Steve

User
Posted 23 May 2016 at 13:00
Good luck Steve

Bazza

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 23 May 2016 at 13:44
Steve

Look forward to hearing good news from you.

Thanks Chris

User
Posted 23 May 2016 at 14:03

I hope the results don't take too long Steve

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

User
Posted 25 May 2016 at 11:32
Steve

Not the best news, but as you say you are still alive. Still being here always gives a hope of improvement. Enjoy the Amsterdam trip and don't do anything silly.

Take care.

Chris and Dawn

User
Posted 25 May 2016 at 11:46

hi steve
not the best of news, but you are still going to Amsterdam, stay off the wacky bakkie

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 25 May 2016 at 12:32
Steve,

After all you've been through you still have the green light for your Amsterdam trip. Shame about the other news though but as you say you're still with us.

John

User
Posted 25 May 2016 at 13:24

Sorry it wasn't better news Steve but forewarned is forearmed.

It presumably explains your constant tiredness?

Enjoy that Amsterdam trip

We can't control the winds - but we can adjust our sails
User
Posted 25 May 2016 at 13:31

Sorry the news was not the best.

Enjoy your trip to Amsterdam.

 

KRO...

User
Posted 25 May 2016 at 14:31

I guess at least you know where you are now and can plan accordingly. Hope you really enjoy your trip.

Best wishes

Rosy

User
Posted 02 Jun 2016 at 06:55
Steve,

The word 'envious' comes to my mind, I'm really pleased for you that you've had your last jab. Hopefully the side effects from the last 2 years will wear off for you soonest.

John

User
Posted 02 Jun 2016 at 07:39

Good news for you Steve.

Now it's just finding patience!!

We can't control the winds - but we can adjust our sails
User
Posted 02 Jun 2016 at 09:24
That's good Steve, I had my last HT injection last November and am feeling stronger and more alert than when I was having the injections. Hoping for the same for you asap.

Arthur

User
Posted 07 Jun 2016 at 18:05

Oh dear - how much has it risen by? Hopefully, it is simply that the GP who gave the wrong dose also injected it incorrectly or the practice has been storing it badly

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

User
Posted 07 Jun 2016 at 18:05

Disappointing is not a good enough word but I can't think of a better one at the moment. Hang on in there.

Thinking of you

Rosy

User
Posted 07 Jun 2016 at 18:12
Sorry to hear this Steve

Keep your chin up mate

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 07 Jun 2016 at 21:31
Hi Steve

What is the rise? Glad you are having the scans, it will give the oncologist the information needed to make the right decisions.

Sorry to hear this news Steve, maybe it's lucky you had the twelve week injection of HT after all.

Take care

Allison xx

User
Posted 07 Jun 2016 at 22:29
Steve,

Sorry to hear your PSA is up, hopefully the scans are just a precaution.

All the best,

Arthur

User
Posted 08 Jun 2016 at 06:19
Steve,

Sorry to hear your news but wish you all the best for the scans.

John

User
Posted 08 Jun 2016 at 08:31

Hi Steve,

Sorry to hear this latest news... good luck with the scans

KRO...

User
Posted 08 Jun 2016 at 08:39

Hi Steve

Every time you are up, it seems there's a sledgehammer to knock you down again. Hope the scans results go OK and the PSA rise was due to the injection.

Paul

Stay Calm And Carry On.
User
Posted 08 Jun 2016 at 10:24
Originally Posted by: Online Community Member
Hi,

To be honest, I haven't thought too much about it until now becauseI've beenso busy over the last few days with the work I've been doing for PCUK, photographing the London to Amsterdam Cycle Ride. It was a great event, so many heroes taking part to raise money to help us all in our fight against PCa. I was so pleased they asked me to take on this role, I finally got chance to see the city I've wanted to visit for ages. I justhope they like the stuff I shot.

Well, I'll try and post my results tomorrow evening.

Steve

[/quote

Just a thought Steve - is it possible that your PSA has gone up because of being busy with the cycle ride?

Arthur

Edited by member 08 Jun 2016 at 10:26  | Reason: Not specified

User
Posted 08 Jun 2016 at 12:27
Steve,

Thanks for posting your results. Hopefully it is just a blip but I can understand your concerns. I'm 17 months past RT now and my levels have remained at 0.2 for the last two tests. I'm dreading my next Onco visit next month. I sincerely wish you well.

John

User
Posted 08 Jun 2016 at 12:29

Check out Ray's profile to remind and reassure yourself how the PSA can vary when you still have a prostate, of which healthy cells can repair over time.

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

User
Posted 08 Jun 2016 at 13:56
Steve

Not the news you wanted and having a slowly rising PSA myself I know how you must feel. Try to stay positive, not that I always do.

Take care.

Thanks Chris

User
Posted 08 Jun 2016 at 19:31

Try to keep upbeat mate....some sound advice from Lynn..

Bri

User
Posted 08 Jun 2016 at 20:15

not a high number Steve it may still level off so all is not lost mate fingers crossed Andy

User
Posted 09 Jun 2016 at 21:34

hope it is good news next week for you Steve wishing you all the best Andy

Edited by member 09 Jun 2016 at 21:35  | Reason: Not specified

User
Posted 09 Jun 2016 at 23:33
Steve,

I too was dx'd 2 years ago this week. Good luck for the bone scan, at least you know what to expect. I recall having that scan too.

John

User
Posted 10 Jun 2016 at 15:44
Hi Steve

You must feel like your whole life has been on 'hold' for 2 years.

I think we all probably have had that feeling, scared to plan anything, dreading blood tests, worrying and wondering what will happen next.

I hope that the scans will show that there is nothing to worry about, it is good news that you are getting these scans, so either way, action can be taken ( or not as the case may be). Another difficult wait though, both for them and the results.

My OH is due the full set of tests again in October and the test times seem to come around so fast.

Is there any support in the area, people you can chat to face to face?

Of course you always have us lot!

Alison

User
Posted 10 Jun 2016 at 18:18

Hi Steve
Don't worry , my psa goes up and down but has remained under 0.1 over the last 15 months. I don't worry too much about increases in the 0.0x range but then I'm an engineer.

Sounds like your photography sessions are great, they must give you great pleasure and motivation. Concentrate on the plusses Steve.

I'm thinking of you

Paul

User
Posted 10 Jun 2016 at 19:29

Hello Steve,
Have just started to pick up posts having been away again camping.
Sorry that you appear to have stepped back in time.

No point in saying "Don't worry" because you will eh ! Natural after all.

Next Tuesday will seem like a very long time to wait. I really really really hope that the scan can show reasons for the rise. Thinking of you as usual.
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 12 Jun 2016 at 22:08
Hi Steve,

Keep your chin up , not easy I know we are going tomorrow for our results. Life is sometimes very hard but stay positive.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 Jun 2016 at 02:24

Hi Steve, sorry that you are in a worrying spot again. Try and stay positive. Waiting for results is very stressful and time moves so slowly when waiting. Cheers Georgina

User
Posted 17 Jun 2016 at 19:54

Hi Chris,

Good Luck for Monday.  I wish my results were due next week. 

I had my CT Scan this morning, now comes the wait to see what they find.  Hopefully, nothing. 

Have a good weekend.

Steve

User
Posted 22 Jun 2016 at 16:21
Terrific news Steve

Well done,

Arthur

User
Posted 22 Jun 2016 at 16:36

Well, they'll be happy tears won't they.

Good for you Steve.

Hope everything else in your life is looking up too !!

Big Big sigh of relief.

We can't control the winds - but we can adjust our sails
User
Posted 22 Jun 2016 at 16:40

Lovely news Steve
I hope you can chillax a little now !! Remember the ticker !!
Very best wishes
Chris

If life gives you lemons , then make lemonade

User
Posted 22 Jun 2016 at 17:28

Brilliant news! Cry lots of happy tears!!!

User
Posted 22 Jun 2016 at 17:39

Fantastic news Steve!

Keep Right On!

KRO

 

User
Posted 22 Jun 2016 at 18:44
Very pleased to hear this good news!
User
Posted 22 Jun 2016 at 19:15

Steve.

******* well done mate, really pleased for you. You certainly deserve some good news.

 

Thanks Chris

 

 

User
Posted 22 Jun 2016 at 20:58

Great news Steve you must feel a great weight has been lifted from your shoulders, will raise a glass of wine for you tonight .Andy

Edited by member 22 Jun 2016 at 20:59  | Reason: Not specified

User
Posted 22 Jun 2016 at 21:02

That's fantastic !! It's great to hear such positive news 👍🏼
Viv

The only time you should look back is to see how far you have come
User
Posted 22 Jun 2016 at 21:14
So good to read fantastic news Steve

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 22 Jun 2016 at 21:18

Fabulous news,Steve, I think I will cry for you as well.

The more good news the better on here, it gives us all hope and our spirits a lift up.

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 22 Jun 2016 at 21:21
Steve,

Absolutely fantastic news. Really pleased for you.

John

User
Posted 22 Jun 2016 at 22:52
Fandabidosie ,

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Jun 2016 at 23:27

Steve
That's fantastic news Steve , it's great to hear good news.

All the best for forever

Paul

User
Posted 23 Jun 2016 at 07:00
Fabulous news Steve, what a massive relief.

I have been off line for a while as we are moving house but been thinking about you!

Alison

User
Posted 23 Jun 2016 at 09:45

That's really good news. New day, new Steve!

 

User
Posted 23 Jun 2016 at 10:09
Wonderful news Steve you have been through a lot to get to this point, but you did it, I'm so pleased for you.

Roy

User
Posted 25 Jun 2016 at 01:11

Hi,

Thank you, everyone, for your kind messages.

I'm so pleased to reach the remission stage of my treatment after all the events of the last two years but feel guilty for celebrating this when I think of those who are not so lucky on this site.  I'm just so relieved that, after being told two weeks ago, that my radiotherapy may have failed, to have reached this point.

I realise that, given my original diagnosis, my oncologist has warned me that my cancer may well return in the future but for now, I appear to be clear. 

I still feel really tired, weak and totally lacking in energy but hopefully that will improve in the coming months, once my hormone treatment finishes.  I do have an appointment with an haematologist in a couple of weeks, that may provide some answers, as some of my blood figures are not as they should be.

I will continue to do voluntary work (using my photography skills) with PCUK and Macmillan Cancer Care as it's the only way I can usefully contribute towards the work of these charities, because I'm pretty useless at anything else. 

Thank you, for being really good friends, not only to me, but many others on this site.

Steve

 

User
Posted 25 Jun 2016 at 06:55
Steve,

I am not in your position yet but am really happy for you that you have reached the stage where you have have had good news. So enjoy it and don't feel guilty at all. After all it's what having gone through the treatment is all about. Aiming to give you the chance of survival and for the moment you've achieved that and long may that continue.

We all like good news and you've provided that for us. But you have given us some scares too !

Best wishes,

John

User
Posted 25 Jun 2016 at 08:45

hi steve
good to read about your news about blooming time good things started happening for you long may it continue

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 25 Jun 2016 at 20:35

Steve,
it's great to hear some good news.
And it's fantastic that it has happened to you.
Well deserved!

Kick back and enjoy the good times :)

All the best

KEvin

User
Posted 25 Jun 2016 at 22:14

Hi Steve

I am so pleased to hear of your really good news

see you in the flyer in Dec

Barry

User
Posted 24 Jul 2016 at 08:54

I'll bet you are Steve and this heat isn't helping either is it.

Still, it's done now and he must have had a good reason (at least I hope he did rather than pick up the first implant that came to hand!!)

You'll get there. It has to end some time.

Best Wishes

Sandra


********

We can't control the winds - but we can adjust our sails
User
Posted 24 Jul 2016 at 21:46
It'll take many months to feel normal again Steve, but it will be worth it.

Lots of love

Devonmaid

User
Posted 25 Jul 2016 at 22:39

Hi,

Found out some wonderful news this afternoon. 

We found out we're due to be grandparents again! 

A total surprise but delighted.  A brother/sister for Alex, our first.

Steve

 

User
Posted 25 Jul 2016 at 22:53
Way to go ,

Steve this is as good as it gets my friend , do a few hooplas and a couple of loop the loops . Mind the heart though.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Jul 2016 at 23:59

Congratulations to you all

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

User
Posted 26 Jul 2016 at 08:12

Whoop!

Congratulations Steve!

Don't you love unexpected surprises like that?

That put a bounce in your step I bet.

 

Best wishes to all

 

Kevin

User
Posted 26 Jul 2016 at 23:46

What lovely news. Something good to look forward to!

 

User
Posted 10 Aug 2016 at 17:22

Hello Steve,

congratulations on the good news!  New grandchild means more work, so take it easy my friend.

 

Frank.

User
Posted 10 Aug 2016 at 21:13
Lovely news for you Steve, you are going to be a busy man, not least with the camera.

Hope that things are steadily improving for you and that you are feeling a little stronger.

One day at a time my friend.

Alison x

User
Posted 10 Aug 2016 at 23:22

Hi Steve

Brilliant news. Many congratulations!

Paul

Stay Calm And Carry On.
User
Posted 12 Aug 2016 at 17:50

I've got my fingers and toes crossed Steve. Good luck.
Paul

User
Posted 12 Aug 2016 at 18:17

Everything crossed for you including my eyes as usual!!


*********

We can't control the winds - but we can adjust our sails
User
Posted 12 Aug 2016 at 19:33
Steve

Congratulations on the news and hope the PSA stays where it should be.

Thanks Chris

User
Posted 13 Aug 2016 at 20:01

SB time Steve

Good luck

User
Posted 14 Aug 2016 at 07:45
Steve

Great news about grand child.

Good luck with the PSA...

KRO...

User
Posted 14 Aug 2016 at 09:39
Hi Steve lovely news about your grandchild something good to focus on. Hope all goes well with psa. Jayne
User
Posted 17 Aug 2016 at 16:04

Hmmmmm. Can understand your concern since it's risen every time. Easily said but try not to worry too much.

*****

We can't control the winds - but we can adjust our sails
User
Posted 19 Aug 2016 at 16:19

Hope somebody can help you Steve. it must be very worrying for you.

****

We can't control the winds - but we can adjust our sails
User
Posted 19 Aug 2016 at 16:30
Hi Steve,

Hoping and praying for a positive answer for you.

Best wishes,

Arthur

User
Posted 19 Aug 2016 at 17:40

The rise to 0.07 is still lower than it was in May 2015 and you were on HT then. It may just be your healthy prostate cells recovering - you still have a prostate so you are not really expected to go down to undetectable and then stay there. Look at Ray's profile for reassurance. My guess is that the onco will be more interested in seeing what happens once the HT is out of your system - if it rises rapidly or goes above 2, then there may be some cancer cells left that are too small to see on the scans. Even if that was the case, you know from others here that oncos have very different views about where the threshold is for re-starting HT on a longer-term basis - some say 5, some say 10 and some wait until it gets to 20.

Even if that is what happens to you in the future, this opportunity from September onwards to get your body clear of the chemicals makes sense.

Edited by member 19 Aug 2016 at 17:40  | Reason: Not specified

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

User
Posted 19 Aug 2016 at 17:44

Steve.

Your onco is on the ball requesting scans. Most likely PSA too low to show, if there is anything to show, or scan needs a more thorough investigation.

Good luck and my fingers crossed for you its just one of those blip periods I've had

Ray

Edited by member 19 Aug 2016 at 17:46  | Reason: Not specified

User
Posted 24 Aug 2016 at 18:42


Well done Steve

A milestone indeed. Enjoy that beer or two !

Best Wishes

Sandra

*******

We can't control the winds - but we can adjust our sails
User
Posted 24 Aug 2016 at 18:43

That must be such a good feeling,
Enjoy your night tonight Steve I think you more than deserve a pint or two after all you have been through 🍻🍻🍻
Viv

Edited by member 24 Aug 2016 at 18:44  | Reason: Not specified

The only time you should look back is to see how far you have come
User
Posted 24 Aug 2016 at 19:52
Enjoy your pint

I'll raise a glass for you tonight Steve

Cheers!

🍺🍺

Arthur

Edited by member 25 Aug 2016 at 07:30  | Reason: Not specified

User
Posted 24 Aug 2016 at 19:55

Steve

Good to reach a goal, it has been an eventful couple of years, lets hope the next couple are less eventful.

Thanks Chris

User
Posted 24 Aug 2016 at 20:04

You've been through so much Steve. I'm sure the future will be brighter and more relaxed. All the best

If life gives you lemons , then make lemonade

User
Posted 24 Aug 2016 at 20:43

Enjoy your pint Steve. Nice evening for it.

 

Kevin

User
Posted 24 Aug 2016 at 21:42
Well done Steve...

A pint or two well deserved!

KRO...

User
Posted 25 Aug 2016 at 07:34
Hi Steve at last you have reached your target date. I really hope you had a great evening and had a pint or two with no hangover today 😊
User
Posted 26 Aug 2016 at 07:17
Hi Steve, really glad you have had a good week - it really is about time 😊. Lovely news about your daughter. Have a good weekend. Jayne x
User
Posted 26 Aug 2016 at 08:55

Phew ! Glad that worry is over now anyway.

Well done to your daughter. It isn't easy for our children to have to cope with studying at the same time as putting up with the rubbish bits of our lives

*****

We can't control the winds - but we can adjust our sails
User
Posted 30 Aug 2016 at 19:20

Hello Steve,

congratulations to your daughter's GCSE results - fabulous!  Also well done on completing your current treatment.

 

Frank.

 

User
Posted 21 Sep 2016 at 11:03
Hi Steve,

From NHS England Site:

"You have the legal right to ask to see a particular doctor or nurse at the GP practice. For more information, see: Can I choose to see a male or female GP?"

KRO...

User
Posted 29 Sep 2016 at 18:23
Hi Steve

I was off HT one day short of a year. In that time my testosterone only got back to 7.2 I only had a big increase in testosterone in the last month

Must admit I did feel much better and the hot flushes went quite quickly

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 29 Sep 2016 at 19:26
Hi Steve,

I was on HT for almost 3 years. in January my oncologist told me to stop having the injections, next one was due in February. By my next appointment in May I was feeling that I had more energy but still had the odd hot flush, but my testosterone was still low. We went on holiday in June and did a lot of walking, considering my wife uses a wheelchair I felt quite strong by then. When I went to my next appointment in August my testosterone was normal. My only problem now is the lack of motivation to go for walks etc. My wife says I need to buy a dog!!

Arthur

User
Posted 01 Oct 2016 at 14:32
Hi,

Si, thanks for your reply, I hope everything is going well for you with the break from HT. It's too early to expect any change for myself but am looking forward to it when It does come. Hoping to come up to Newark sometime soon, I've been away too long.

Arthur, pleased to hear you are enjoying some improvement after finishing HT. Hopefully, we'll have chance to have a chat at the Flyer if you can make it.

Steve

User
Posted 21 Oct 2016 at 12:59
Hi Sandra,

Unfortunately I had to get home even though it would have nice to stay somewhere.

It was really nice to see PCUK staff members I've got to know and others who are fundraising or have Prostate Cancer.

A very pleasant evening.

Steve

User
Posted 21 Oct 2016 at 19:23
Saw the FB photos Steve thank you for that , Kev ( I run ) is such an inspiration those of us on this forum know that he has his down times but what a guy and so glad that you were able to be there to witness and photograph the event.

Shame you couldn't stay the night but at least you were able to capture the moment in pictures.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Oct 2016 at 12:38
Hi Steve,

Just because your PSA has been rising it doesn't necessarily mean it will continue to rise now you've stopped the HT, but I can understand your concern. It's always a nervous time but hopefully any fears you have will be unwarranted. My last HT injection was November 2015 and I've had 4 monthly appointments with the oncologist this year, my next appointment is also on 1st December so all being well we can compare notes at the "Flyer" on the 7th?

All the best,

Arthur

Edited by member 25 Oct 2016 at 15:24  | Reason: Not specified

User
Posted 25 Oct 2016 at 14:05

Been exactly where you are Steve. Incurable does not mean imminent death, please try to get that out of your mind. If the PSA has risen, there are many cocktails of hormones and permutations to keep your quality of life on par with what it is today. My radiotherapy ended in January 2013 and the PSA started to rise then indicating I was incurable. That is nearly four years ago. I'm still here.

Also, December 1st is a bit far away to be worrying about the PSA just yet. As the world's worst worrier, can I suggest that you really try hard to put it out of your mind (much easier said than done), focus on your life in the moment and only allow yourself to worry the week before. This is the approach I take and it works. Nothing on this earth will ever stop you worrying about your health and indeed your life. It is what makes us human, but trying to compartmentalise worry is a strategy that I as a clinically diagnosed catastophist is one which works.

Wishing you a great November and strength and good luck for the first week of December.

Bazza

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 04 Nov 2016 at 21:53

Hi,

A bit of a milestone yesterday.  It marked one year since I last spent time in hospital because of my heart problems.  In the previous 12 months, I had been admitted five times into the Cardiac Care Unit so to go a whole year without further admissions makes me feel really good.

Just hope my cancer treatment (radiotherapy) has worked.  Now I've ended hormone treatment, I may find out in the coming months, hopefully I might know more when I see the oncologist next month.

Have a good weekend everyone.

Steve

User
Posted 04 Nov 2016 at 22:43
Steve

Not going to tempt fate, so well done and see you soon.

Thanks Chris

User
Posted 04 Nov 2016 at 22:51
That's great news Steve, here's hoping for more to come.

Arthur

User
Posted 05 Nov 2016 at 01:36

Hopefully, one year will turn into two and then three and then ten!

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

User
Posted 05 Nov 2016 at 17:02

Good luck brother

Bazza

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 06 Nov 2016 at 07:51

Keep on rocking Steve. Good luck

Paul

User
Posted 06 Nov 2016 at 20:26

Good luck Steve, - my, doesn't time fly!  Keep rolling with those punches!

flexi

User
Posted 10 Nov 2016 at 16:08
Hope all going well Steve.

Keep Right On...

KRO...

User
Posted 12 Nov 2016 at 11:21

Hope all well with you Steve.

We can't control the winds - but we can adjust our sails
User
Posted 12 Nov 2016 at 12:05
Hi,

Unfortunately, the new avatar doesn't reflect how I feel.

Steve

User
Posted 23 Nov 2016 at 16:37

Hello Steve,

I pray that you are feeling better.  Good luck with your next appointment.

 

 

Frank.

User
Posted 27 Nov 2016 at 06:56

Hello Steve.

Sorry to see the latest news.

Hope you had a restful (hospital - restful - oxymoron!) night and that the medical staff are looking after you well.

Hope you feel better soon.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 27 Nov 2016 at 09:15
Sorry to hear this Steve.

Get well soon mate.

KRO...

User
Posted 27 Nov 2016 at 09:46
Best wishes for a speedy recovery Steve

Arthur

User
Posted 27 Nov 2016 at 12:42

Sorry to hear this - hope all is sorted out soon

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

User
Posted 27 Nov 2016 at 20:06

Best wishs Steve,
Thinking of you, know what its like to have ticker probs

User
Posted 28 Nov 2016 at 19:44
Hope you feel better soon

Very Best

Gary

User
Posted 28 Nov 2016 at 19:44

Hi Arthur,

Yes, I'm home now.

I've just spent half an hour writing a long post and then lost it off the screen when I tried to post it.  Really frustrating.

I will post later this evening but feel a bit tired just now.

Thanks for your message.

Steve

User
Posted 28 Nov 2016 at 19:53

Take it easy Steve

Bri

User
Posted 29 Nov 2016 at 06:58
Hi Steve

I'm glad everything went well with the cardio and have my fingers and toes crossed for your next onco appointment.

All the very best

Paul

User
Posted 29 Nov 2016 at 07:40
Steve

Everything crossed for your blood test.

Thanks Chris

User
Posted 29 Nov 2016 at 08:15

Hi Steve,
sorry to hear of your recent issues.

Regarding your PSA, as you may remember I too came off HT at the same time as you and see my Onco in December.
I managed to sweet talk the surgery and had a PSA test last month which shows both PSA and Testosterone still on the floor.
I would guess yours will probably be the same as the HT takes some time to flush from the system.

Keep well matey,

Kevin

User
Posted 29 Nov 2016 at 19:45
Steve - hope all is well with your PSA test - Walter
User
Posted 09 Dec 2016 at 17:48

Glad that you and the doc are happy Steve. Always a worry.

Working 18 hour days is a bit of a mixed blessing eh. Money for Christmas but too tired to enjoy it?

We can't control the winds - but we can adjust our sails
User
Posted 10 Dec 2016 at 02:10
Steve

Glad the doctor happy for the time being and hoping they bring the PSA under control.

Walter

User
Posted 10 Dec 2016 at 09:16

Sounds good to me Steve. Now you have a good run before your next test.
I hope you will continue to feel better without the HT, let me know when you are jogging/running again. Good luck mate

Paul

Edited by member 10 Dec 2016 at 09:17  | Reason: Not specified

User
Posted 20 Jan 2017 at 22:04

Hi,

Looking forward to taking part in a bucket collection for Macmillan Cancer Care tomorrow at our local Argos store. Only problem is that I have to work too so I will be calling back at different times of the day.

It's happening nationwide so if you visit an Argos store tomorrow, please donate a bit of cash. Every little helps. Thanks.

Have a good weekend.

Steve

User
Posted 17 Feb 2017 at 07:47
Hard luck!

Rest, and cancel some of those things.

User
Posted 17 Feb 2017 at 08:13
Wishing you well Steve.

Arthur

User
Posted 17 Feb 2017 at 09:08
Steve

Hope it is nothing serious, take it easy.

Thanks Chris

User
Posted 17 Feb 2017 at 09:43

Trying to fit it all in Steve, it was bound to take it's toll. Hope you feel better soon

We can't control the winds - but we can adjust our sails
User
Posted 17 Feb 2017 at 09:47

Hope it is sorted quickly Steve

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

User
Posted 17 Feb 2017 at 10:30
All the best, Steve
User
Posted 23 Feb 2017 at 00:54

Hi,

Wow. A very special day today (Wednesday).

At lunchtime my eldest daughter gave birth to her second child, our third grandchild (all boys, we're halfway to a six-a-side football team !).

We feel so proud to be grandparents again and so excited about going to see them both in hospital tomorrow afternoon. A wonderful reason to visit the hospital rather than my experience last week.

Steve

User
Posted 23 Feb 2017 at 06:04
Congratulations, granddad!

Walter

User
Posted 23 Feb 2017 at 06:21
Good for you!

Pleased to read!

Bravo!!

As we the Spanish would say, ¡enhorabuena!

User
Posted 23 Feb 2017 at 08:55

Congratulations Steve and Mrs Steve. Some good news at last

Enjoy your hospital visit this time!!

We can't control the winds - but we can adjust our sails
User
Posted 06 Mar 2017 at 22:40

Good news :-)

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

User
Posted 07 Mar 2017 at 00:48

Hi Steve,

Good news, you deserve a break.

:)

Dave

User
Posted 07 Mar 2017 at 08:16

Happy for you, Steve

User
Posted 17 Mar 2017 at 09:39

Good luck :-)

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

User
Posted 17 Mar 2017 at 10:29
Steve

Good luck with the run. Any links to a sponsorship site ?

Thanks Chris

User
Posted 17 Mar 2017 at 15:25
Good luck Steve. Don't forget to listen to your body.

Arthur

User
Posted 17 Mar 2017 at 19:41

Well proud of you giving this a go Steve. Take it easy and good luck

If life gives you lemons , then make lemonade

User
Posted 17 Mar 2017 at 19:58
Brilliant Steve keep going and good luck.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 19 Mar 2017 at 22:17
Hi Steve,

I've seen the results- on the Reading half marathon website - you did it - well done!

Hope your post race recovery goes well

All the best

Arthur

Edited by member 19 Mar 2017 at 22:20  | Reason: Not specified

User
Posted 21 Mar 2017 at 08:31

I was so pleased to see you did it Steve, just getting to the starting line took some guts.

I hope you raised the money you hoped to raise.

We can't control the winds - but we can adjust our sails
User
Posted 21 Mar 2017 at 08:31
Fantastic achievement Steve - very well done. The blisters will fade but not the buzz.
User
Posted 21 Mar 2017 at 08:40

Bravo!!

Incredible guy!!

User
Posted 22 Mar 2017 at 19:43
Well done Steve...

Hope all going well with you.

KRO...

User
Posted 22 Mar 2017 at 21:09
Fantastic news Steve.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Apr 2017 at 11:52

Hi Steve,

as always I'm late. Well done on completing the marathon - I could never do that!

Never mind on your time, that shows that you didn't over-work your heart.  Great news on completing your treadmill test, the other day. I'm afraid I didn't complete mine last year. So I will be reviewed in a couple years time.

 

Frank.

User
Posted 14 Jun 2017 at 02:07

Hi,

Today (Tuesday) I had my 6 month review with my oncologist.  She was satisfied with my progress as my PSA had only risen to 0.356 from 0.136, when I last saw her in December.  The disappointing news was that she thought the effects of my Hormone Treatment (stopped last August) may last for anything up to another 18 months, as a recent testosterone test showed my levels were only 0.3, when the normal range is anything between 7 and 31. 

The side effects of the HT are still very much still with me and I'm sure it's the reason why I lack the motivation to do things sometimes.  Having said that, I would still recommend RT and HT as a treatment option as some seem to have much greater problems following surgery.

At least I'm still here and have a lot to be grateful for.

Steve

Edited by member 14 Jun 2017 at 02:14  | Reason: Not specified

User
Posted 14 Jun 2017 at 08:35

As you say Steve, you're still here.

Long may it continue (with improvement of course!)

We can't control the winds - but we can adjust our sails
User
Posted 08 Sep 2017 at 02:25

Hi,

I have not posted for a while but wanted to update my situation.

I had my latest PSA results this week and was a little shocked by the increase in the figures. 

I usually have the test done every three months and have found that the figure has risen in every test since my low point of 0.027 in December 2015.  It has been a gradual rise, with the figure reaching 0.356 in June this year.  With this test, I expected the figure to be around 0.5 but was shocked to learn that the figure has gone up to 0.910 this time.  At that rate of rise, the figure could be close to 1.50 by the time I see my oncologist in December.  She did say in June that she would consider restarting hormone treatment if the figure went over 2.10 as it probably meant that the curative treatment may have failed if that happened.

I feel as if, all of a sudden, I might soon be facing the prospect of the cancer being incurable.  I feel very uncertain about my future survival, in much the same way as I did when I was first diagnosed just over three years old.

Steve

Edited by member 08 Sep 2017 at 15:09  | Reason: Not specified

User
Posted 08 Sep 2017 at 08:18
Hi Steve,

Sorry to hear your PSA readings have risen, hopefully your Oncologist will have something to be able to reverse this.

Best wishes as always,

Arthur

User
Posted 08 Sep 2017 at 15:20

As someone once said to me,  "There's probably light at the end of the tunnel, but with my luck, it would probably be an oncoming train!"

User
Posted 08 Sep 2017 at 16:58

Hi Steve, Sorry your readings are rising like this. Are you now going to arrange seeing your oncologist or a specialist nurse before December?

As Arthur has said I am sure the oncologists will have a treatment plan in mind. Hopefully whatever they decide to do will knock your PSA back into submission. On another note thank you for your reply to the message I sent you a few weeks ago. It was very much appreciated and helpful. I did reply but was told your private message inbox was full!

All best wishes, Ian. 

Ido4

User
Posted 08 Sep 2017 at 18:25

Just catching up with posts now I'm home Steve and again, I'm sorry to read your news.

 

Could you perhaps speak to your consultant's secretary and ask for at least a telephone consultation to put your mind at rest?

We can't control the winds - but we can adjust our sails
User
Posted 08 Sep 2017 at 18:54

Hi Steve,

Sorry to hear your news - its an anxious time.  Keep posting your up-dates - I feel sure everyone is thinking of you and supporting you in this.  Take care

 

User
Posted 08 Sep 2017 at 19:39
Hi Steve

Sorry to hear of the PSA rise. If the rise is as you expect in December I would suggest asking for a PET/CT Scan or similar to pinpoint the area of concern, but let hope it is a blip.

All the best

Roy

User
Posted 09 Sep 2017 at 07:41

Hi Steve

don't start panicking yet, Tony was diagnosed gleason 9 T3B spread to seminals in 2006. he had ht and rt. he has been on and off ht ever since, he is still here with no side effects apart from hot flushes. whenever he has had to go back on ht his psa has gone down almost straight away to almost undetectable.

regards Barbara.

User
Posted 10 Sep 2017 at 09:09
Steve

Disappointing to hear about the rise but as others have said there will be options. Take care of yourself and stay positive.

Thanks Chris

User
Posted 10 Sep 2017 at 13:08
Steve

Thinking of you in these worrying times.

Ulsterman

User
Posted 10 Sep 2017 at 18:32

Hi Steve,
I would start asking for monthly PSA tests, not sure of your Gleason score your Onco will advise you when / if you should look at going back on HT,
I was on 2/3 monthly tests and my PSA was going up to 1.70 when it suddenly went down to 1.40 , they then said we will put you on four monthly tests as your PSA has gone down, I did think then that is the F@@@@@G kiss of death and I was right four months later PSA 3.02 and had a scan spread to bones , be careful
Barry

PS I am now lining up early Chemo six sessions {based on Stampede results} and back on HT but it was hard work getting Onco to look at this treatment path.

User
Posted 11 Sep 2017 at 14:27

Hi Steve
Sorry about your latest results but hopefully nothing to worry about.
It might be advisable to talk to your onco or nurses before your appointment though.
Paul

User
Posted 24 Nov 2017 at 07:31

Hopefully it will be ok Steve. I’m in the same boat —- a blood test for everything on the 5th and Onco 8th. My psa is expected to have doubled to around 15 :-(.
I’m just dreading the words scans , Chemo and Abi. Best wishes

If life gives you lemons , then make lemonade

User
Posted 24 Nov 2017 at 08:20
Steve

Being nervous is better than worrying, hope all goes well.

Thanks Chris

User
Posted 24 Nov 2017 at 10:48
Hi Steve

Always a bit of trepidation but try not to worry as all you will achieve is to waste time that could be spent enjoying yourself. You will deal with the results when you get them the same as you have dealt with everything else that has been thrown at you.

All the best to you.

Kevan

User
Posted 24 Nov 2017 at 16:47
Hi Steve, It's always the same waiting for test results with a bit of dread at the back of your mind. Hopefully you can find things to occupy your mind to reduce the nervousness. Wishing you all the best, Ian.

Ido4

User
Posted 26 Nov 2017 at 08:08

Hi Steve, just catching up with site news - don't come on here very often lately.  Will keep everything crossed for you (as I do for my o/h (whose PSA has also risen)  and all the other guys out there) its a sensitive time of year for a lot of people so as I said, will be thinking about you and wishing you well.  Take care now.

 

 

 

 

User
Posted 04 Dec 2017 at 06:08
Hi,

Thank you for your nice comments.

My apprehension over my PSA test have been overshadowed by recent events.

For those who don't get to see my facebook page, you wouldn't know that in the early hours of Saturday morning, my Mum passed away. Fortunately I was with her when it happened, so she didn't die alone. She had lived a long life but it still seems she was taken too soon.

She was the best Mum anyone could have. I was very lucky.

Rightly or wrongly, I never told her about my cancer or my heart attack. I didn't want her final years to be spent worrying about my health, which she would have done. It wouldn't have been fair on her. I hope if she knows now, looking down on me, she would forgive me for that.

Live will never be quite the same again.

Steve

User
Posted 04 Dec 2017 at 07:35

Hello Steve
I am so sorry to hear about your Mum but am glad you where with her at the end.
My thoughts are with you at this sad time.
regards
Barbara

User
Posted 04 Dec 2017 at 09:56
Steve

So sorry to hear about your mum, please accept our sincere condolences. Mums are so special,I still miss mine and shed a tear many years after her passing. I took some comfort that I was with my mum at the end and I hope it gave her some too.

Take care of yourself, thinking of you.

Love Chris and Dawn

User
Posted 04 Dec 2017 at 14:53

Hi Steve,

Sorry to hear about the loss of your mum. My mum died about the same time but a few years back and it’s hard. I hope you are able to deal with all that’s required easily.

Hope your oncology appointment on the 19th goes well and you get some positive news.

Best wishes,

Arthur

User
Posted 04 Dec 2017 at 16:11

Very sorry to hear the news about your mum Steve. Always very sad losing someone.

Will be thinking about you and the rest of the famliy.

Take care, Ian.

Ido4

User
Posted 04 Dec 2017 at 17:34
Hi Steve

Very sorry to hear the news about your Mum as no time ever seems to be the right time regardless of age or state of health.

You evidently thought the world of her and to have dealt with your own health problems in the way that you have without adding to her worries is testament to the type of guy you are.

All the very best with the test result on the 19th. Let us know how you get on.

Kind regards

Kevan

User
Posted 04 Dec 2017 at 21:00
Sorry to read about your mum Steve, my sincere condolences, Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 05 Dec 2017 at 07:17

Morning Steve, so very sorry to hear that news.  What a comfort to you and I hope to your Mother that you were together right to the end.  I am sure everyone is being supportive to you at this sad time.  I lost my own mother this time of year - so do understand how you are feeling.  As I said to her the night before she passed away, I have the best mother in the world - very wisely she said to me 'we all think that' and I guess she was right but it hurts.  You take care now and I know you will be supported both with your family, wider circle of friends and this community.

User
Posted 06 Dec 2017 at 11:43

Hi Steve

A bit late reading about your mum. So sad to read that and yes like many mothers she will understand your reasons. Hope the result is a good one.

Ray.

User
Posted 30 Dec 2017 at 12:27

Well, I'll keep my fingers, toes and eyes crossed for you too Steve, and good luck with the half marathon.

You can do it !!

We can't control the winds - but we can adjust our sails
User
Posted 30 Dec 2017 at 13:41
Steve

Good luck for the race.

Sorry to read of your concerns about possibly of needing more hormone therapy. Fingers crossed you won't need it.

I've avoided Reading since surgery but looks likely I'll be going there again for radiotherapy soon as my PSA has now shown two sustainable rises. I see the oncologist on Wednesday. I'm going to ask for Bracknell - the cancer centre there is apparently very good.

Ulsterman

User
Posted 30 Dec 2017 at 14:59
Another runner! I’m also a runner. Ran 2 marathons a week apart at the start of April as training runs for an ultra. Managed around 3.50 on both. Then my “groin strain” was diagnosed as adavance stage PCa widespread through the bones and the pain was caused by stress fractures of the pelvic bone caused by running on cancer weakened bones. Started HT straight away and so far it’s kept the PSA at none registerable levels (although blood tests next week may say otherwise). Took me 2-3 months to get back to running and it’s been so tough without testosterone. I’ve gone from just behind my clubs fast runners to just ahead of the slow ones! Confidence was badly affected and the stress of diagnosis and treatment didn’t help. I ran Manchester Half in October to raise money for Christies and was expecting to come in around 2.15 (1.39 the previous year) but somehow managed 1.56 and was elated. I’ve always loved my running but now I quite often find it soul destroying but I do know that I have to stick at as the exercise helps with the fatigue. How has the PCa impacted on your running?
User
Posted 30 Dec 2017 at 17:20
Good luck for the race Steve. I hope you can avoid going back on HT, keeping everything crossed for you. Ian.

Ido4

User
Posted 31 Dec 2017 at 09:35

Hi Steve
if you do have to go back on hormones don't' think that it will be necessarily for life, my husband has been on and off them for years one time it was only 6 months, as soon as his psa has gone back to almost zero he has been taken off them. He went back on them at the beginning of this year and was told he would be on them for good but this is 11 and half years from when he was diagnosed. his only other treatment was RT.
regards Barbara

User
Posted 13 Feb 2018 at 18:51

Hello Steve, 

I'm sorry to hear you're feeling down.Is your PSA currently 2?  Why do you believe that you may die? Excuse my naiivity.

Which health condition gives you more worry? For myself, I worry about my heart disease.

With all your problems, I admire your determination to even enter a running race! I can't run 10 yards! The only exercise I can take, is to go out walking, or use my exercise bike.

Keep pestering your oncologist and health professionals. If they give you hormone therapy once more, wouldn't that be a good thing; besides the side effects of course. And don't think that you may not be cured - have you actually been told that?

 

 

Frank.

 

User
Posted 14 Feb 2018 at 10:05
Steve - I got a dog to take out on long walks. Not the same as your runs, but it does get me out of the house. On another note, I'm taking a bit of a career break, so if you'd ever want to meet up for lunch or a dog walk, we're not that far away from each other. PM me if you fancy it.

Ulsterman

User
Posted 13 Mar 2018 at 15:28

Best wishes for Tuesday ,
Debby

User
Posted 13 Mar 2018 at 15:32
Steve

Hope all goes well with your appointment.

Thanks Chris

User
Posted 13 Mar 2018 at 15:36

I'm currently on holiday Steve and won't always be able to log on so I'll wish you good luck now in readiness for Tuesday.

We can't control the winds - but we can adjust our sails
User
Posted 13 Mar 2018 at 15:43

Good luck for next week Steve xx

 

User
Posted 13 Mar 2018 at 15:53
Hope all goes well for your test Steve. Try to stay positive.

I think I seem to follow you - I’ve got my PSA Test next week followed by appointment with oncologist on 22nd

All the best,

Arthur

Edited by member 13 Mar 2018 at 22:37  | Reason: Not specified

User
Posted 13 Mar 2018 at 16:09

Me too Steve. Psa and CT Friday. Full bone scan next Monday then results Fri 23rd. Good luck to us both. My psa expected to be around 24 :-//
It’s the scans I’m worried about as I feel FINE !!!

If life gives you lemons , then make lemonade

User
Posted 13 Mar 2018 at 17:21
I will be thinking about you Steve, hope it’s better news than you expect. I had a full body bone scan Monday 26/2/18 and have a pelvis MRI next Monday to check things are ok.

Nervous about that too.

Ian

Ido4

User
Posted 13 Mar 2018 at 19:32

Good luck Steve

Barry

User
Posted 14 Mar 2018 at 06:01
Wishing you all the best, Steve, take care, Janet
User
Posted 15 Mar 2018 at 10:46
The waiting for results is awful, I sympathise.

Ian

Ido4

User
Posted 17 Mar 2018 at 07:21
Steve,

Don’t beat yourself up, you’ve made a wise decision, there’s always another day.

Arthur

User
Posted 17 Mar 2018 at 08:54
Hi Steve

I think you are just being sensible. You know how you feel and it would be a bit daft to put yourself at risk and potentially undo all the good work that you and the medics have done for you.

I appreciate that you feel disappointed but maybe you can still encourage others by going along and giving them a cheer or getting some photos that others will appreciate.

Don't be so hard on yourself as there is no need.

There is snow in the wind here and it is a pretty strong, cold wind (by southern standards) as well and I am about 40 miles from you so I think you are a wise man.

Take care.

Kevan

User
Posted 20 Mar 2018 at 07:20

Thinking of you today Steve and hoping the results are what you want

Fingers crossed !!

We can't control the winds - but we can adjust our sails
User
Posted 20 Mar 2018 at 08:06
Hi Steve

Hope today goes well for you so will be thinking of you.

Kevan

User
Posted 20 Mar 2018 at 08:25

Good Luck today Steve

Don't deny the diagnosis; try to defy the verdict
User
Posted 20 Mar 2018 at 08:37
Hi Steve, I will be thinking of you today.

Ian

Ido4

User
Posted 20 Mar 2018 at 11:09
Best wishes for today Steve

Arthur

User
Posted 20 Mar 2018 at 13:11

Best wishes for today
Debby

User
Posted 20 Mar 2018 at 16:02

Hope the results were ok Steve

Bri

User
Posted 20 Mar 2018 at 17:11
Hi Steve

Sorry to hear that you didn't get the news you wanted but at least you know now and can crack on with the HT. It's probably no consolation to you but after RALP and SRT didn't get me down to undetectable my first PSA following HT got the result and it's still there at the moment.

All the best

Kevan

User
Posted 20 Mar 2018 at 17:36

Sorry to hear that news Steve. Another step change I guess. It’s all steps and new norms isn’t it ! The worrying just never ends. Keep strong

If life gives you lemons , then make lemonade

User
Posted 20 Mar 2018 at 18:18
Really sorry to hear that Steve. I know you won’t be happy being back on HT but hopefully it will bring your PSA down quickly.

It’s a major disappointment that RT has failed.

Wishing you all the best, Ian.

Edited by member 20 Mar 2018 at 18:25  | Reason: Not specified

Ido4

User
Posted 21 Mar 2018 at 18:13

Hi Steve,
Sorry to hear that news ,
Has your Onco set out a treatment path

Barry

User
Posted 01 Apr 2018 at 21:15
Hi Steve, so sorry to read that. Hope the medics can come up with something to make the HT tolerable.

Are you getting a cardiac check done?

Best wishes, Ian.

Ido4

User
Posted 02 Apr 2018 at 06:18

I am sorry to learn your news too Steve. Does you oncologist liaise with the consultant involved with your cardiac condition?

Barry
User
Posted 02 Apr 2018 at 08:55

Thinking of you as usual Steve.

We can't control the winds - but we can adjust our sails
User
Posted 02 Apr 2018 at 10:10

Steve

sorry to read you're having troubled times yet again. Fingers crossed they get the treatment for you sorted.

Ray

User
Posted 03 Apr 2018 at 11:26
Hi Steve, have you had any of the newer PSMA scans to try and localise the recurrence?? If it's in a node that can still be irradiated this could help??
User
Posted 03 Apr 2018 at 20:28

Sorry to hear about the poor result Steve. Hope you get back out running soon, good weather on its way.

User
Posted 05 Apr 2018 at 23:57
Hi,

Bone Scan done. Hopefully, may get the results by the end of next week. I feel ok.

I face a really busy weekend and week ahead. It will be tiring but then my wife and I are off for a short break in Amsterdam to see the tulips. Looking forward to that, it's been a tough month, in many ways.

Steve

User
Posted 11 Jun 2018 at 19:03
Steve, so sorry that your have been going through all this. I understand how you feel: tired, sad, but after having fought life so hard, please, keep on going. This is not the end of the way.

It seems your PC is still there, but even so, come on. Try to find some relief to your dolency and live

You know better than me that even with that f***** disease men can survive.

Big hug!

Lola

User
Posted 11 Jun 2018 at 21:28

Hi Steve, it’s a difficult road we are travelling, I hope you can get to a point where you feel better than you do right now.

Last time you posted you had a bone scan. How were the results?

Have you had any other scans?

best wishes, Ian

Ido4

User
Posted 11 Jun 2018 at 21:33
Hi Steve,

So sorry the RT failed to do the job and for all your cardiac problems. Hope HT works well long term and anything else that needs to be added or changed in due course. Do let us know how it goes.

Barry
User
Posted 11 Jun 2018 at 22:30
Hi Steve,

Sorry to read your update - what treatment are you having now?

Keep strong.

Best wishes,

Arthur

User
Posted 22 Jun 2018 at 18:25
Steve

All sounds pretty good in your new life.

I understand totally what new life means and like you have to adapt to the new level

I'm so glad you are still doing the photography to keep you active.

Great numbers on the scorecard.

Keep on trucking

All the best

Paul

User
Posted 23 Jun 2018 at 19:12
Results sound positive Steve. Your attitude sounds pretty upbeat also which as we know is half the battle

Happy anniversary it was our 30th on the 18th also

Bri

User
Posted 28 Jun 2018 at 05:39
Just caught up with your post Steve.

Belated Wedding Anniversary wishes to you both.

Excellent news on the PSA front, long may it continue

We can't control the winds - but we can adjust our sails
User
Posted 06 Sep 2018 at 19:58

Hi Steve,

Sorry to hear of this rise in PSA, hopefully it will stabilise or plateau out.

What’s your oncologist’s view on this?

Keep strong my friend.

Arthur

User
Posted 06 Sep 2018 at 21:33

Sorry to hear about the PSA rise Steve ,

But there is loads in the box yet

keep on top of your Onco 

I know that you have been through the mill

 

Barry

User
Posted 06 Sep 2018 at 22:13

Sorry to read ths Steve. Keep fighting my friend. There are more treatments in the tool box.

 

Ido4

User
Posted 06 Sep 2018 at 22:28
Sorry to hear your news Steve keep going
User
Posted 06 Sep 2018 at 22:31
I’m so sorry to hear your bad news, Steve. I’m on the (hopefully) “curative RT” path myself (started HT on 17th Aug, RT due to start next Feb). It’s a salutary reminder that it doesn’t always work. I wish you the very best of luck on your future journey.

(Keen photographer myself, using Olympus OM-D E-M1 Mark II)

Chris

User
Posted 06 Sep 2018 at 22:47
Sorry to read your news Steve. As Barry says loads in the box yet.

Keep strong

Ray

User
Posted 07 Sep 2018 at 19:57
Ah Steve, just seen your update. What a b****r for you. You have definitely been through such a lot

Thinking of you and your family my friend. Don't give up yet !!

We can't control the winds - but we can adjust our sails
User
Posted 30 Oct 2018 at 20:09
Hi Steve ,

I know we are all different But have a look at my PSA results and treatment from

15th Nov 2015 0.6,

15th Dec 2015 1.14,

15th Jan 2016 1.2 slowed at last.

22nd Feb 2016 0.9 going down testro 16.04

Appointment at the RM back on six monthly

5th May 2016 PSA 1.11 Testro 16.6

Update on the UCLH ,in London my efforts on getting an AUS fitted takes another step this Friday 22nd May 2016

I go in for another stretch as it is closing up again

27th May 016

Had a stretch at the UCLH , when I came home I went straight into retention cathetering a couple/three times a day

10th August 2016 PSA 1.15 up .04

Oct 2016 1.73 Psa up .6

Nov 2016 1.52 Psa down .21

Jan 2017 1.40 Psa down .12

June 2017 3.2 Psa doubled and a bit

Scan results tomorrow

Had PET/CT Scan results on the 27th July

Opps not so good three hot spots

neck

shoulder

groin

Back on Hormones Prostap

User
Posted 30 Oct 2018 at 23:53

Steve

None of us like to see a PSA increase, no matter how small.

Ulsterman

User
Posted 31 Oct 2018 at 10:59

Hi Steve,

Sorry to hear your PSA has risen again, try to keep positive.

Best wishes

Arthur

User
Posted 31 Oct 2018 at 12:10

Sorry to hear this Steve. Is it worth contacting your specialist nurse or the oncologist‘s secretary to see what their thoughts are?

Ian

Ido4

User
Posted 31 Oct 2018 at 15:55
Sorry this has happened Steve.

Thinking of you all

We can't control the winds - but we can adjust our sails
User
Posted 01 Nov 2018 at 08:19
Time for a psma scan, to see what's been missed and if it's locally treatable.
User
Posted 01 Nov 2018 at 14:13
Agree a PSMA scan might be helpful. You could check whether you could have this on the NHS.Certain hospitals have already indicated they wish to do this and I am not sure whether lack of implementation is due to any one or more of three considerations, namely NICE approval for NHS, lack of funds, the need to have nearby source of generating the ligand. Unfortunately, the cost of the scan privately is of the order of £2500 depending where you go which unless things have changed recently means in the London area for UK.

If only a very few hotspots are found it may be possible to treat these and slow the progression of cancer, either as stand alone or with systemic treatment.

In view of your other medical condition it would be best to establish whether the foregoing would be helpful.

Barry
User
Posted 01 Nov 2018 at 19:22
Sorry to read your latest result. Worth asking for an earlier than planned onco meet?

Ray

User
Posted 02 Nov 2018 at 08:22

The oncologist at the Royal Marsden Hospital told me they have a PSMA scanner there but it’s only available for patients within their catchment area. I think it would cost me more than £2600 to move from Coventry to Sutton in Surrey to be included in that group, should I ever need such a scan!

I think there is also one at UCLH, and at the Mount Vernon Hospital: https://www.stricklandscanner.org.uk/

There does seem to be a dearth of these sophisticated scanning facilities in Britain and the Birmingham Prostate Centre say they have had to send over 30 patients to Germany for such scans in the past. So much for the miracle of the NHS (although it has been miraculous for me recently).

A recent post here noted that a new Thorium isotope is showing good promise as an even better PET tracer than Gallium 68, the gold standard up till now. This nuclear medicine is advancing rapidly, almost daily, so we all might be completely cured one day soon! 😉

Cheers, John.

Edited by member 02 Nov 2018 at 08:30  | Reason: Not specified

User
Posted 03 Nov 2018 at 16:34
There are lots of cases out there who really seem benefit from further salvage radiation if there are only a couple of hot spots to deal with.

I think it would be worth asking about.

User
Posted 08 Jan 2019 at 22:04

Steve

Sorry to see this. It's all very unsettling. 

I'm wondering if we are with the same oncologist.

Ulsterman

User
Posted 09 Jan 2019 at 06:36
That sounds really disappointing Steve. So your first HT hasn’t lasted a year then ? Hope the next one does a lot better for you

If life gives you lemons , then make lemonade

User
Posted 09 Jan 2019 at 08:37

Sorry to here this Steve. I hope your oncologist will send you for scans soon rather than wait and then plan any additional treatment based on the scan results.

My wife and I have renamed my oncologist Dr. WTF because of the number of appointments where he has taken a completely different tack from the expected one. Usually a more pessimimistic one too.

Is it worth contacting specialist nurses and getting a second opinion?

 

 

Ido4

User
Posted 09 Jan 2019 at 11:55
Yes, If I were you I would request a second opinion on the NHS with an eminent oncologist of your choosing.

Best of luck.

Cheers, John.

User
Posted 09 Jan 2019 at 16:13
What was your testosterone reading? If you are above castrate level then the HT isn't working - possibilities include the wrong dose being given, too long a gap between injections, it being injected in the wrong site or stored incorrectly. If you are below castrate level then yes, you are becoming hormone independent but it is sensible to delay adding another hormone like bicalutimide at the moment because it has a limited life span in terms of effectiveness. The only possible alternative I could see right now is chemo but a) there is no evidence of mets outside the prostate bed (so could be a sledgehammer / nut scenario) and b) your heart problems may rule it out anyway.

So waiting until the PSA is a bit higher and then having a body scan seems very wise.

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

User
Posted 09 Jan 2019 at 20:17
Hi Steve

I don't know if early Chemo would work for you , I have had eighteen months since chemo plus HT , they may give you early chemo plus Abbi tabs ,I am now 70 , psa 0.04 and feeling ok

Barry

User
Posted 11 Jan 2019 at 23:50
That's one possibility - or maybe to have the 3 monthly dose every two months; there are a couple of men on here that have needed to do that. Adding bicalutimide is another possibility, or trying Stilboestrol (oestrogen) instead of ADT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jan 2019 at 13:06

Hope you get a way forward soon Steve. Your GP sounds fantastic.

That level of support is very reassuring.

Ian

Ido4

User
Posted 12 Jan 2019 at 14:29

Good luck moving forward Steve, been following your fight for a while, inspired me mate. 

Best wishes

Chris.

User
Posted 12 Jan 2019 at 15:10

What they did was dose me a three monthly dose every six weeks. This kept me clear and PSA stable albeit a little high for three and a half years. It was only in July last year when the PSA started to take an upwards tumble with a low T reading which indicated the start of metastasis and therefore the chemo which I began on Monday this week.

Edited by member 12 Jan 2019 at 19:57  | Reason: Not specified

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 12 Jan 2019 at 20:45
Great to hear you have such a supportive GP Steve. Try and take heart in the fact that there is still much in the armoury

Bri

User
Posted 13 Jan 2019 at 08:25
Seems a bit of an oversight by your onco that they haven't checked your totesterone as a matter of course??

Definitely get that question answered

User
Posted 15 Jan 2019 at 17:22

Steve

Instead of the usual good luck messages, I saw this quote and thought of you straight away.

Life is like a camera..

Focus on whats important..

Capture the good times...

Develop from the negatives..

If things dont work out, 

Take another shot !!

Im getting soppy in my old age, gotta be the ht ? 

Take care mate

Chris.

User
Posted 07 Mar 2019 at 09:26

Morning Steve,

sorry to hear that the numbers are on the way up.

Perhaps the Zolodex will need more time to get a hold second time round?

It must be very worrying for you.

Thinking of you,

 

Kevin

User
Posted 07 Mar 2019 at 09:47
Steve

Sorry to read of the continuing increase. Hopefully they wiĺl soon add something to reverse the trend.

Keep fighting

Ray

User
Posted 07 Mar 2019 at 12:35

Hello Steve,

I'm so sorry to hear about your rising PSA levels.

I was taking Prostap injections, until July of last year. I'm also still experiencing side effects.

Is there a particular reason, why your PSA levels continues to rise? Your oncologist doesn't sound very friendly, I must say.

You remain in my prayers, dear friend.

 

 

Frank.

User
Posted 07 Mar 2019 at 12:39
Any chance of early chemo or ABI??
User
Posted 07 Mar 2019 at 18:15
Sorry to read this Steve. It's a fear many of us have that some cells are not hormone sensitive. I hope when the oncologist adds Abi, enzo or chemo you get a good response.

Thinking of you.

Ido4

User
Posted 07 Mar 2019 at 18:21

Steve

It's been a long slog so far and you have got past many hurdles along the way, keep going mate.

Thanks Chris and Dawn.

User
Posted 08 Mar 2019 at 12:06

Steve, Zoladex failed very quickly for me too. try Prostap 3 monthly then, if you show signs of failure, increase the frequency of dosage. i have 3 monthly injections every 6/8 weeks. it lasted four yesrs before failing again 

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 28 May 2019 at 20:34

Hi, 

Had a phone call from a doctor this afternoon which really shook my confidence in my GP surgery.

He phoned me up to express concern that the results from recent blood tests showed that my testosterone level was only 0.4, the normal range being 7 to 31.

Shocking news..... to someone not on hormone treatment, but when I told him I was on Zoladex for my cancer treatment, he apologised saying that he'd not noticed I had incurable prostate cancer. 

I'm really going to make sure that any appointment I have there in the future , is not with him!

Steve 

Edited by member 28 May 2019 at 21:11  | Reason: Not specified

User
Posted 28 May 2019 at 23:18

 Very concerning Steve. It worries me that doctors are under so much pressure they don’t really know their patients.

When my PSA jumped from undetectable to 0.3 the GP who looked at my result ticked it as being in the normal range despite my prostatectomy.

I was furious that they didn’t read or know my background.

Hope you are dong ok back on the HT bus.

Ido4

User
Posted 28 May 2019 at 23:19

Steve, it was great to meet you on Friday. This forum feels like a giant second family, but still nothing beats meeting up face to face those whose contributions you follow.
Can I remind you about the info on the walk you were going to email me?
Obviously, this should have been a PM, but your inbox is full.

Cheers, Andrew

User
Posted 31 May 2019 at 04:38

I cannot believe a slow release which is supposed to last 84 days would suddenly stop working on the 85th or 86th day. However, I have searched for such data in the past as I was curious how long you had to wait after the last injection before no more goserelin was being released, and no such data seems to be available - all testing seems to stop on the 84th day. The nurse doing mine said they are not permitted to administer even 1 day early, but to aim for a 5 day period from the 84th day, although I've not found any scientific evidence or manufacturer data to back that up. There is a graph of the release rates of the 4 week and 12 week doses on page 10 of this document: https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/020578s034,020578s035lbl.pdf, but again not showing what happens on the days after 84th

It is interesting to note that the release profiles of the 4-week and 12-week Zoladex are completely different, with the 4 week peaking in the middle of the period, and the 12-week peaking (much higher) for the first 4 days. For administration to females, the 4-week seems to be required, but for males, there seems to be no preference between the 4-week or the 12-week.

User
Posted 11 Jun 2019 at 08:14
Happy anniversary!! Keep up the the good fight!!
User
Posted 11 Jun 2019 at 08:40
My husband had to wait an extra three days for his injection due to the nurse being called away on the day his was due. It was fine and they said up to five days was ok.
User
Posted 11 Jun 2019 at 09:09

I hope you’re still here for a long time Steve.

Great post.

Ido4

User
Posted 11 Jun 2019 at 12:09
Steve

Well done for 5 years. I'm jogging along right behind you.

It's amazing as you say how the treatment seems to wear you down more than the illness.

But you must keep on trucking, you're photography must help you keep active.

Best of luck for the next 5 years

Paul

User
Posted 11 Jun 2019 at 21:49

5 years so far Steve and many more to come I am sure. 

For what it’s worth I have had my zoladex late by up to a week due to me being away and I can’t believe that a few days will mean the cancer suddenly takes off so don’t worry about a couple of days.

take care 

Kev 

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 11 Jun 2019 at 22:25

Steve.

I am just over five years since surgery, although we went down different routes we have both had "interesting" journeys. Here's to the next five years. Still here and still moaning.

Thanks Chris And Dawn.

User
Posted 11 Jun 2019 at 22:26
Keep reaching those milestones. It's been a tough time for you but use that experience to be even stronger in the years ahead.

Good luck

Ray

User
Posted 11 Jun 2019 at 23:03

Well done! Here’s to another 5 and another 5 and another 5 etc!

x

User
Posted 11 Jun 2019 at 23:04
Well done Steve. It will be 7 years for me in November since I was diagnosed

Bri

User
Posted 22 Jun 2019 at 03:48
Moving home after so many years can be traumatic especially if you move far away leaving behind friends and neighbours and various things you were involved in. My wife and I wanted to downside anyway but we moved from surrey to Devon to support our younger daughter and her children. One of the downsides has been having to travel to Greater London for hospital appointments, whereas I was only a few miles from the Sutton Marsden previously. It would have been a lot easier for us if circumstances had allowed us to stay within the district we knew so well. I think that unless you move within a district you know well it's better to do so before you get so old as it can be difficult to build new friendships when you move much further away and are elderly.

Anyway, wish you well in your new home and of course with your medical problems.

Barry
User
Posted 22 Jun 2019 at 08:28
Sometimes that change can bring plenty of excitement and lots of little jobs and projects to keep your mind occupied. But I’d hate to move as we have made our house our forever home. But El will probably have to move on when I do. :-((

Good luck Steve

If life gives you lemons , then make lemonade

User
Posted 22 Jun 2019 at 10:08
Just make sure it's not one of those places that locks you in!

Also it's not wise to try and predict the future to much none of us knows what is going to happen. I certainly did not see my 34 year old marriage ending the way it did. Or meeting someone new who suits me so much better.

So while I understand you have done the maths and worked out the odds don't assume that path is written.

User
Posted 22 Jun 2019 at 17:28

Steve

Hope all goes well with the move.

Thanks Chris And Dawn

User
Posted 22 Jun 2019 at 17:47
Good luck with the move Steve. Hope the sale goes through without too much hassle.

We've moved 7 times (excluding rental) and debating whether to move again ( I'm the more keen one by far) and if so where and what to.

Ray

User
Posted 22 Jun 2019 at 19:55

I am eyeing up those retirement complexes Steve but they are very expensive round here. Good idea to do it now as there is no way John could move now. Good luck and enjoy the change 

love Devonmaid cxx

User
Posted 23 Jun 2019 at 09:30

Good decision, Steve, but I understand your regrets. Once moved I hope it takes a lot of stress away, and remember nothing can take away memories of your long time home and life there.

I hope the positives make it all worthwhile.

Take care, Janet 

 

User
Posted 23 Jun 2019 at 14:14

All the best with the move Steve.

Ido4

User
Posted 23 Jun 2019 at 20:41

Watch out for hidden charges Steve.

Barry

User
Posted 24 Jun 2019 at 08:34

I hope you will be happy in your new home. Make sure you keep up with hobbies etc and keep getting out and about. I hope there will be lots of new opportunities for you. All the best.

Edited by member 24 Jun 2019 at 08:44  | Reason: Not specified

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User
Posted 18 Apr 2016 at 15:41

Hi Steve

I think you have hit "ultra-sensitive psa test anxiety". You are down at such low levels of measurement that something like the time of day that you had the blood sample taken might alter the result. My GP (who I trust) is happy that any result under 0.1 is treated as effectively unmeasurable.

In Wales, the NHS is desparately short of funds, so we only have the less sensitive PSA test. As long as I keep clocking up <0.1, I'm happy and I can reserve my stress levels for other things. All the same, the family can tell when I am in the waiting period between each blood test and the result - that bit of anxiety doesn't go away!

If you want something to stop you worrying about PSA, start supporting Leicester City.... or Lewis Hamilton.... or Andy Murray.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 18 Apr 2016 at 16:49

Hi Tony,

You're right of course.  I think my main concern is about the other blood test results as my general health and fitness have got worse over the last two months.  I can't even run much more than twenty yards without being totally exhausted.

I've edited my post to put my last line next to my previous sentence instead of starting a new paragraph.  It seems to make more sense that way.

Don't worry, I'm more stressed by the fate of Leicester City, as Bill Shankley once said talking about football "It's not about about Life and Death, it's more important than that!

Steve

Edited by member 18 Apr 2016 at 16:58  | Reason: Not specified

User
Posted 18 Apr 2016 at 18:47

Know what you mean. Last year, testosterone virtually zero, so on Testosterone Replacement Therapy, this year, thyroid too low so pills for that and now have to see haematology because my full blood count is too high. Good grief, falling to pieces.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 18 Apr 2016 at 18:59
Steve

As T say PSA is still low, but I know how you feel, any rise gets the brain working overtime. Hope the other bloods are nothing major.

Thanks Chris

User
Posted 18 Apr 2016 at 20:58

Wait to see what the GP says.
It is natural to worry, so it is allowed, and you don't need to worry about that reaction!
Best of luck.
Henry

User
Posted 22 Apr 2016 at 23:52

Hi,

Saw a GP today and he said that my blood test results showed that I was anaemic.  He's sending me to have more blood tests at the hospital to try and find out why this is happening.  So hopefully, it will be sorted soon.

Facing a really interesting weekend as I'm working as a photographer for Prostate Cancer UK at the London Marathon.  I'm really looking forward to it.

Last Sunday I covered the Brighton Marathon for them, which they seemed pleased with, so hopefully, I can do the same for them this week.

Have a good weekend.

Steve

User
Posted 23 Apr 2016 at 07:18
Steve

Have a great time at the marathon and remember not to join in with the running.

Thanks Chris

User
Posted 23 Apr 2016 at 07:23

Glad you are feeling more able to do stuff again Steve. Those light sunny mornings help me loads. Boosts me completely.
Chris

If life gives you lemons , then make lemonade

User
Posted 23 Apr 2016 at 10:50
Thanks,

Chris, I don't think I will joining in as I'm finding it difficult to run at the moment. My energy levels are really low. I'm being checked out by the hospital but really need to have the Cardiac MRI scan.

Chris J, feeling good about being able to do some of my work for PCUK, they've just asked me to be their photographer for the London to Amsterdam Cycle Ride in June, so that should be interesting.

It feels good to feel that I might be doing something worthwhile.

Thanks guys.

Steve

User
Posted 23 Apr 2016 at 12:51
Great news Steve, and lovely to see you posting again in such a positive frame.

I hope that they can sort out the anaemia issue, as this will be sure to be making you feel tired out and with all this work coming up you will need some extra energy!

ATB

Alison

User
Posted 23 Apr 2016 at 13:07
Thanks Alison,

I feel very much as if I need a new set of Duracell batteries for my body. Looking forward to ending my hormone treatment in June to see if that gives me an energy boost. Hope so.

Hope everything is ok with you.

Steve

User
Posted 23 Apr 2016 at 14:22
Steve,

I'm really envious of you stopping HT in June. I've been given a further year now and am due to finish in August 17 ( 36 months ). Being on HT is really draining so I hope that you gain the extra energy coming off this summer. Fingers crossed for you. I could with some of that energy right now !

John

User
Posted 23 Apr 2016 at 18:40
Hi Steve

We are okay at the moment thanks, breathing a sigh of relief after the blood in urine incident on Easter Sunday.

My OH finished the HT about 6 months ago and starting to feel a little more energized, I know it takes time, I hope you will feel the same.

keep in touch

Alison

User
Posted 23 Apr 2016 at 22:08

Not long now before the end of HT and increased energy as it's effect diminishes.

Have a great day tomorrow - will be watching on TV.

Barry
User
Posted 24 Apr 2016 at 17:37

Hi Steve
I'm very envious also that you're coming off HT. The fatigue really does get to you.

I've just had my 6 th 12 weekly Prostap jab and whilst I'm still running I'm struggling to do much more than a 10k.
I have to say though that after I've run that I do feel recharged so exercise for me seems to help.

I hope everything goes well for you and look forward to you reaching the "cured" camp.

Paul

Ps Hope you enjoyed photographing the London Marathon

User
Posted 29 Apr 2016 at 00:28

Hi,

Good News. 

I've finally received the date for my Cardiac MRI Scan (after a three month wait).  It's booked for the 22nd. May at 9am.  I was surprised to see that it was a Sunday but when I received the written details this morning, I found out that it's going to be done at a private hospital.  Probably my regular hospital is trying to catch up with the backlog of appointment requests.

I hope this scan helps to find out if my heart is performing ok and the arteries are not blocking up again.  If everything is ok then it will be a big relief and give me confidence that I'm not going to suffer a heart attack again if I push myself too hard.

I suppose if the heart was blocking again it would be a reason why I've been feeling breathless and so lacking in energy in recent months.  I feel so exhausted most of the time, far more than I've ever done before.

I know finishing HT in June will help with the fatigue and if I get the all clear for my heart in the next month, it will help me to feel as I used to before these medical issues started (if that's possible for any of us here).

Steve

 

 

Edited by member 29 Apr 2016 at 00:40  | Reason: Not specified

User
Posted 29 Apr 2016 at 07:27

fingers x steve it all goes to plan

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 29 Apr 2016 at 10:59

Hope all goes well for you
Very Best
Gary

User
Posted 29 Apr 2016 at 13:50
Steve

Hope all goes well with the scan.

Thanks Chris

User
Posted 29 Apr 2016 at 16:24
Another wait Steve, til 22 nd May, but I hope all goes well for you and they can get to the cause of the heart problems.

Sounds like you are still feeling quite upbeat, good for you!

ATB

Alison

User
Posted 29 Apr 2016 at 20:27

Steve
Wow I'm not surprised if yore feeling upbeat.
Heart scans in May hopefully will show all is well and coming off HT in June well don't we all want to be off HT.
All the best
Paul

User
Posted 13 May 2016 at 19:33

Hi,

I just realised that it's two years ago today that I was sent to hospital for blood tests which resulted in me finding out that my PSA was 48.85.

I didn't even know what PSA was and didn't realise that I was beginning a journey that was going to change my life forever.

Perhaps 13 was an unlucky number for me.

Steve

 

User
Posted 13 May 2016 at 19:47
Steve

I think we have both had an "interesting " two years, let's hope the next two years turn out to be good but uneventful. Take care.

Thanks Chris

User
Posted 13 May 2016 at 22:00
Hi Steve

Maybe 13 is your lucky number. Just think if you hadn't had those tests things might have turned out even worse.

I can understand your feelings though as I always think similar on my "anniversary".

Sending you my best wishes.

User
Posted 13 May 2016 at 22:39

Good luck for the 22nd Steve. I'll be thinking of you and keeping everything crossed.

I'm not surprised you're exhausted. A combination of HT, anaemia and stress is not a good cocktail.

Best Wishes to you as usual

We can't control the winds - but we can adjust our sails
User
Posted 14 May 2016 at 01:06

Hi Steve
Let's hope the next two years will be better, they can't be any worse than the last two. Keep on going, you will do that half marathon yet.
All the best
Paul

User
Posted 14 May 2016 at 07:47
Steve,

I'm approaching my second anniversary since dx too. But I think my journey has been slightly easier than yours. However you will soon be released from HT whereas I have a further year to go.

Good luck for the 22nd.

John

User
Posted 15 May 2016 at 12:43
Hi Steve thinking of you on the 22. Jx
User
Posted 19 May 2016 at 02:24
Hi,

Thanks for your messages.

Starting to feel anxious about the outcome of the Cardiac MRI Scan l'm due to have on Sunday. I suppose I feel worse because I've waited so long for it. If it reveals that I'm suffering further problems with the arteries then I may face the possibility of further treatment not only this year but in future years. If no problems are found, it raises the question of what else could be causing the total lack of energy and severe breathlessness. I've suffered with fatigue during the last two years of HT but never as bad as this.

I haven't slept well the last couple of nights, which doesn't help.

Hopefully, taking part in a planning session with PCUK later today about my role as the photographer for the London to Amsterdam Cycle Ride in a couple of weeks time will take my mind off things.

The trip should be fun providing health issues don't get in the way of me going. Feeling that, somehow, you are helping with the work of the charity really helps raise your spirits.

Must try and sleep now.

Steve

Edited by member 19 May 2016 at 02:32  | Reason: Not specified

User
Posted 19 May 2016 at 07:22

Two forty five in the morning and you're still up and on the computer!! Hope you got some rest. I do know what it's like to be awake when the rest of the world seems to be able to get its head down. It's a very lonesome feeling.
It also allows the mind to wander, probably down paths you shouldn't be looking at because there are no distractions.

Hope the planning sessions go well. Yes it's something to focus on as well as helping PCUK, but this is for you Steve.

It's what you do, what you are good at. I know you'll give it your very best shot. You'll need to find the strength and energy from somewhere but I'm sure you'll do it.

Go Steve Go !!!!!

We can't control the winds - but we can adjust our sails
User
Posted 19 May 2016 at 07:49

hi steve
hope you managed to get back into the land of Nod, the bike ride gives you a good focus at the moment have you posted any pics from the London marathon

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 22 May 2016 at 07:10
Hi Steve,

Wishing you all the best for today, hope it goes well

Arthur

User
Posted 22 May 2016 at 07:44

Hi Steve best wishes for today and I hope all goes well

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 22 May 2016 at 07:50
Steve,

I hope that all goes well for you today

John

User
Posted 22 May 2016 at 08:34
Hi,

Thanks.

Just arrived at the hospital, about to go in.

Funny, I'm sitting in my car next to the flat I lived in for five years before the building was bought by the hospital for use as offices. So many happy memories of that time.

Have to go.

Steve.

User
Posted 22 May 2016 at 13:26

Hi,

Home now, following the Scan.

Scan seemed to go Ok but quite hard going.

Made me feel really tired, going to have to have a sleep before giving more info.

Steve

User
Posted 23 May 2016 at 13:00
Good luck Steve

Bazza

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 23 May 2016 at 13:44
Steve

Look forward to hearing good news from you.

Thanks Chris

User
Posted 23 May 2016 at 14:03

I hope the results don't take too long Steve

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

User
Posted 25 May 2016 at 10:29

Hi,

I managed to speak very briefly to the cardiologist who wanted me to have my Cardiac MRI. 

The good news was that I do not need any further treatment just at the moment and  she ok'd the Amsterdam trip. 

Not so good was that she said the MRI showed my heart has been damaged as a result of the heart attack and other operations I've had and unfortunately it can't be repaired.  So it looks like things may not improve.  I'll have to live with it. 

 

At least I'm alive.

Steve

Edited by member 25 May 2016 at 10:30  | Reason: Not specified

User
Posted 25 May 2016 at 11:32
Steve

Not the best news, but as you say you are still alive. Still being here always gives a hope of improvement. Enjoy the Amsterdam trip and don't do anything silly.

Take care.

Chris and Dawn

User
Posted 25 May 2016 at 11:46

hi steve
not the best of news, but you are still going to Amsterdam, stay off the wacky bakkie

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 25 May 2016 at 12:32
Steve,

After all you've been through you still have the green light for your Amsterdam trip. Shame about the other news though but as you say you're still with us.

John

User
Posted 25 May 2016 at 13:24

Sorry it wasn't better news Steve but forewarned is forearmed.

It presumably explains your constant tiredness?

Enjoy that Amsterdam trip

We can't control the winds - but we can adjust our sails
User
Posted 25 May 2016 at 13:31

Sorry the news was not the best.

Enjoy your trip to Amsterdam.

 

KRO...

User
Posted 25 May 2016 at 14:31

I guess at least you know where you are now and can plan accordingly. Hope you really enjoy your trip.

Best wishes

Rosy

User
Posted 02 Jun 2016 at 01:23

Hi,

Just had my last (hopefully) Zoladex hormone implant at 5.40pm today (Wednesday).  I really look forward to feeling a little better over the next few months.

Steve

 

User
Posted 02 Jun 2016 at 06:55
Steve,

The word 'envious' comes to my mind, I'm really pleased for you that you've had your last jab. Hopefully the side effects from the last 2 years will wear off for you soonest.

John

User
Posted 02 Jun 2016 at 07:39

Good news for you Steve.

Now it's just finding patience!!

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