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User
Posted 31 May 2022 at 09:50

Hi there. I tried to do this yesterday and never realised it would use my full name which I didn’t want to do.  So again I would like to say thanks for all the information that is on the site and the forums here.

 A little about me I had typical symptoms leading to concern around prostate cancer, especially with getting up in the night for toilet and a very slow flow.  I should have when writing added that I am 53 years old.  Went for my PSA with the GP and he immediately let me know this could be cancer.  The long story short now is that I have had all scans and the biopsy.  Before the biopsy they did already diagnose me with advance PC based on discussion of the scans.  The information I have currently is the PSA was 127 and the cancer has spread to bones (ribs and sacrum).  There is also involvement of the lymph nodes, I think nearest to prostate at the moment.  I am still waiting (it’s jsut been a week) on the results of biopsy for the Gleeson score.  I believe my TN and M is T3/4 N1 and M1 Gleason score to come.  So not great :( 

In terms of treatment I have started on Hormone Therapy, initially with the Bicalutamide tablets, 50mg and my first monthly injection of Prostap this Thursday.  I guess I will hear from the Oncologist when the biopsy results are back.  The urologist thought they would go for Chemotherapy. 

So it has been quite a blow as you can imagine however I am trying to stay positive and taking one day at time.  Obviously the nature of things is that this is not curable by my hope and belief is that I can get on with treatment and contain for as long as possible.  The good thing is that ironically I took control of my life last year and have got myself very fit through running, I lost a lot of weight and I can run many miles comfortably.  

So that is me and again I just wanted to say thank you for all the stories, support and posts on this site. It has been very useful in the last few weeks.  I will try and engage with the site and if you are interested let you know my experience and journey.  

Sending positive thoughts to all affected. 

Edited by member 31 May 2022 at 10:59  | Reason: Add some more info including my age.

User
Posted 14 Jun 2022 at 22:26

Wishing you all the best for your future. My late husband was diagnosed at 63 with similar counts to you. All I can say is that it helps to stay positive and do all those things that you want to do. We did a lot together and enjoyed whatever we could for as long as we could. He even climbed a mountain and we had good holidays in a motorhome. We had almost 10 years longer than we expected initially and treatments are being developed all the time.

User
Posted 14 Jun 2022 at 10:34

It is a shock it's a mental battle as well as a physical one you don't have to give into it when you know your treatment plan it's helps go through it and move on  I went r/t hormone therapy route as apart from having a fear off operations didn't want the incontinence issues that most have and to be fair overcome being single and just changed jobs after 25 years πŸ™ˆ didn't qualify for any sick pay only basic and tried various places that help with that sort off thing didn't even get a reply off some soon realized unless you are a regular nothing from the government to help either soon realized it was me against the world but still here and working πŸ™ all the best and good luck with your treatment plan xx gaz

User
Posted 17 Jul 2022 at 18:32
Hi ,my Oh Gary diagnosed at 55 was PSA 23 Gleason 4+5 with spread to lymph nodes .like you he started on prosap ,then he commenced with early chemo .

6 sessions 3 weeks apart , he was lucky as that he continued to work all the way through , only losing body hair .his PSA came down to undetectable after about 3/4 session, he did get tired towards the end .

He is now on a trial which involves enzolutamine and Abiraterone combo .

His diagnosis was 6.5 years ago ,he is still working and his PSA is still undetectable.

Yes life has changed ,fatigue is the major factor but he also needs 2 knee replacements which doesn’t help .

Hope all goes well for you .

Lots of advice on this website

Best wishes

Debby

User
Posted 13 Jun 2022 at 23:40

I was in same situation gleeson 9 5/4 psa 24.9 37 rounds off radiotherapy 2 years hormone therapy 13 months in psa now 0.01 worked all the way through treatment things are currently ok  there is light at the end of the tunnel πŸ‘ keep positive gaz

User
Posted 14 Jun 2022 at 20:40

No problem I had a fantastic job but decided I needed a change alas no sick pay but look forward you will be ok as soon as treatment starts you be see a way forward and realize you are in good hands we are very lucky we have a fantastic health service πŸ‘

User
Posted 15 Jul 2022 at 17:59

Stay strong and positive. Take things one day at a time, no use on dwelling and worrying, I wish you all the best for the future.

God Blesss you. Amen.

User
Posted 15 Jul 2022 at 22:23

Hey Michael, I have followed your post since the end of May and admire, wholeheartedly, your commitment to stay positive and your gratitude at those who endeavour to ensure your best care. I too, in my scratching research, came across the change curve by Elisabeth Kubler-Ross. A quite brilliant bit of insight into the grieving process.

As you say, to battle. There are many of us here that stand shoulder to shoulder with you brother.

Holding your towel.

 

Jamie

Edited by member 15 Jul 2022 at 22:40  | Reason: Not specified

User
Posted 17 Jul 2022 at 17:30

Great that you’re ready for the battle Michael and keeping positive. Definitely the best approach and I’m quite sure a good mindset can take you so much further. Best of luck with the treatment 

User
Posted 24 Jul 2022 at 14:13

Hi there 

I'm new to this site (today actually)and have just read your story I'm also 53 would class my self as fit and healthy also and was diagnosed with advanced prostate cancer in late March with a PSA reading of over 2000!!! I know crazy but that's a long story,good news is I've reacted well to first hormone treatment and my latest PSA reading was 3.5.

Have began new treatment yesterday and moving onto tablets in a few weeks I also had kidney failure so have double pee bags fitted at mo.

I'm the same as you as its takes a lot of getting used to and is emotionally draining for me and my wife

Stick in there pal I'm with youπŸ‘

 

User
Posted 25 Jul 2022 at 11:44

Hi Both

Thanks for response have updated my profile to give you some idea where i am.

Had my 1st Prostap 3 injection Fri 22/07/22 also been given 2 week course of Bicalutamide to see me over till i start my course of Enzalutamide ( why are these treatments so much of a tounge twister lol) tablets in the next week or so.Realise this is the start of my journey and hope to see me 60th birthday!!!am i asking to much?have you heard of many good stories you could tell me guys?

Cheers

User
Posted 11 Aug 2022 at 17:53

Great update Michael, glad to hear your feeling positive and heading in the right direction. Good man.

 

Jamie.

User
Posted 01 Sep 2022 at 07:55
Until recently, it was common for men on long term HT to be given zometa (zoledronic acid) but I have noticed that has tailed off in the last 4 or 5 years. Zometa is given as an infusion whereas aledronic acid is tablet form so easier to dispense. Usual advice is to see a dentist before starting the treatment and, once on it, to always remind your dentist/ hygienist that you are on a bisphosphonate
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Sep 2022 at 18:13

Thanks πŸ‘ gaz

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User
Posted 31 May 2022 at 10:22

Hi Michael,

Really sorry you find yourself here.

Good news that you have commenced treatment already and hopefully that will keep things at bay for a very long time. So much that can be done these days and new trials being done all the time.

Wishing you all the very best and will keep up to date with your journey.

Take care 

Elaine 

User
Posted 31 May 2022 at 18:13

Hi Michael.

Nice to hear from you even though the circumstances are far from ideal. Is the plan to switch to 3 monthly hormone injections. Let's face it you're in this for the long haul so if they can cut down the number of doctor visits etc. You will find this more manageable.

Dave

User
Posted 13 Jun 2022 at 23:40

I was in same situation gleeson 9 5/4 psa 24.9 37 rounds off radiotherapy 2 years hormone therapy 13 months in psa now 0.01 worked all the way through treatment things are currently ok  there is light at the end of the tunnel πŸ‘ keep positive gaz

User
Posted 14 Jun 2022 at 00:39

Yes try to keep positive Michael. Great post from Gaz who is proving there’s definitely light at the end of the tunnel.

It really is a difficult time, and having to wait so long for appointments doesn’t help. Hopefully you will have a good plan in place after the appointment in July.

Sending very best wishes 

User
Posted 14 Jun 2022 at 06:18

Yes keep positive I am just getting ready for work life goes on now πŸ‘ 

User
Posted 14 Jun 2022 at 10:34

It is a shock it's a mental battle as well as a physical one you don't have to give into it when you know your treatment plan it's helps go through it and move on  I went r/t hormone therapy route as apart from having a fear off operations didn't want the incontinence issues that most have and to be fair overcome being single and just changed jobs after 25 years πŸ™ˆ didn't qualify for any sick pay only basic and tried various places that help with that sort off thing didn't even get a reply off some soon realized unless you are a regular nothing from the government to help either soon realized it was me against the world but still here and working πŸ™ all the best and good luck with your treatment plan xx gaz

User
Posted 14 Jun 2022 at 20:40

No problem I had a fantastic job but decided I needed a change alas no sick pay but look forward you will be ok as soon as treatment starts you be see a way forward and realize you are in good hands we are very lucky we have a fantastic health service πŸ‘

User
Posted 14 Jun 2022 at 22:26

Wishing you all the best for your future. My late husband was diagnosed at 63 with similar counts to you. All I can say is that it helps to stay positive and do all those things that you want to do. We did a lot together and enjoyed whatever we could for as long as we could. He even climbed a mountain and we had good holidays in a motorhome. We had almost 10 years longer than we expected initially and treatments are being developed all the time.

User
Posted 30 Jun 2022 at 13:16

It’s probably the HT giving you a bit of bone pain Michael, hopefully this will settle after a little while. Not long for appointment now but I know it’s so frustrating when you just want to get information and can’t. I felt better when I knew the HT was working and knew the side effects. Take care 

User
Posted 01 Jul 2022 at 16:21

Michael, Not much I can say that has not already been said. However, what I would say is to keep positive. Always thankful for each new day. I lost my beloved mother last year after 9mths battle with a debilitating stroke, then got diagnosed with high blood pressure and 2months later got diagnosed with PCa. I have taken it all in my stride and grateful, always look on the bright side, I have a devoted wife (no fuss), I sleep easy at night, even though 6weeks post surgery, I wake up with with my pads full on some morning! I am always looking forward to the next night. I remember, telling my wife before surgery, each time we made love this might be it. The key is to keep re-evaluating what matters and what is important.

User
Posted 15 Jul 2022 at 17:59

Stay strong and positive. Take things one day at a time, no use on dwelling and worrying, I wish you all the best for the future.

God Blesss you. Amen.

User
Posted 15 Jul 2022 at 22:23

Hey Michael, I have followed your post since the end of May and admire, wholeheartedly, your commitment to stay positive and your gratitude at those who endeavour to ensure your best care. I too, in my scratching research, came across the change curve by Elisabeth Kubler-Ross. A quite brilliant bit of insight into the grieving process.

As you say, to battle. There are many of us here that stand shoulder to shoulder with you brother.

Holding your towel.

 

Jamie

Edited by member 15 Jul 2022 at 22:40  | Reason: Not specified

User
Posted 17 Jul 2022 at 17:30

Great that you’re ready for the battle Michael and keeping positive. Definitely the best approach and I’m quite sure a good mindset can take you so much further. Best of luck with the treatment 

User
Posted 17 Jul 2022 at 17:44

Hi Michael,

I just read your thread and admire your optimistic tone and calm demeanour when writing on here.  Reading of aggressive treatment on the NHS is pleasing.  I read some American sites and it seems second nature with good results, although they seem to give chemo very early and say PCa chemo isn't as daunting as other chemos. So I think you should feel you're on a good track and look forward to reading your reports. All the best Peter

Edited by member 17 Jul 2022 at 17:51  | Reason: Not specified

User
Posted 17 Jul 2022 at 18:32
Hi ,my Oh Gary diagnosed at 55 was PSA 23 Gleason 4+5 with spread to lymph nodes .like you he started on prosap ,then he commenced with early chemo .

6 sessions 3 weeks apart , he was lucky as that he continued to work all the way through , only losing body hair .his PSA came down to undetectable after about 3/4 session, he did get tired towards the end .

He is now on a trial which involves enzolutamine and Abiraterone combo .

His diagnosis was 6.5 years ago ,he is still working and his PSA is still undetectable.

Yes life has changed ,fatigue is the major factor but he also needs 2 knee replacements which doesn’t help .

Hope all goes well for you .

Lots of advice on this website

Best wishes

Debby

User
Posted 24 Jul 2022 at 14:13

Hi there 

I'm new to this site (today actually)and have just read your story I'm also 53 would class my self as fit and healthy also and was diagnosed with advanced prostate cancer in late March with a PSA reading of over 2000!!! I know crazy but that's a long story,good news is I've reacted well to first hormone treatment and my latest PSA reading was 3.5.

Have began new treatment yesterday and moving onto tablets in a few weeks I also had kidney failure so have double pee bags fitted at mo.

I'm the same as you as its takes a lot of getting used to and is emotionally draining for me and my wife

Stick in there pal I'm with youπŸ‘

 

User
Posted 24 Jul 2022 at 17:16

Welcome Phil. Impressive PSA, but more important an impressive reaction to HT. Stick with us and ask questions there are some knowledgeable people here.

Dave

User
Posted 25 Jul 2022 at 11:44

Hi Both

Thanks for response have updated my profile to give you some idea where i am.

Had my 1st Prostap 3 injection Fri 22/07/22 also been given 2 week course of Bicalutamide to see me over till i start my course of Enzalutamide ( why are these treatments so much of a tounge twister lol) tablets in the next week or so.Realise this is the start of my journey and hope to see me 60th birthday!!!am i asking to much?have you heard of many good stories you could tell me guys?

Cheers

User
Posted 25 Jul 2022 at 11:58

Hi Phil, I know we have people who have been on here over 15 years who were diagnosed with advanced prostate cancer, and other people who had prostatectomy but the cancer returned (that isn't the good part) who are still here 15 years later (the good part). But actually the thousands of people who have prostate cancer but don't come to this site because they have no problems are probably the good news, but we don't hear about them.

Dave

User
Posted 25 Jul 2022 at 13:01
The bicalutimide should have been started 2 weeks before the first prostap injection - it doesn't really have anything to do with the enzalutimide.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jul 2022 at 20:22

Thanks all for your advice it's put me more at ease with myself.

My paperwork come through the post this morning from my 1st oncology consultation my outlook has been put at several years!!!I understand that that could mean anything but time will tell ah.

The tingleling and funny feelings I get which presume are side effects from the treatment always seem to come on later in the day and evening in the morning I've got a spring in my step,does that make sense with you guys??

User
Posted 26 Jul 2022 at 22:01

Glad you’re feeling a little better about things Phil. 
You’re certainly not asking too much to reach your 60th birthday, the most important thing I think is that you always believe it….keep yourself fit and well and just keep enjoying life. 

In terms of side effects, I know my husband tended to get his hot flushes etc in the evening too….some fatigue throughout the day though.

Wishing you all the very best 

 

User
Posted 11 Aug 2022 at 17:53

Great update Michael, glad to hear your feeling positive and heading in the right direction. Good man.

 

Jamie.

User
Posted 11 Aug 2022 at 23:16

Good to see your update Michael.

Glad you are getting reduced pain and your PSA is going down.

Are you still managing to do your running? Hope so. 

Take care x

User
Posted 01 Sep 2022 at 07:55
Until recently, it was common for men on long term HT to be given zometa (zoledronic acid) but I have noticed that has tailed off in the last 4 or 5 years. Zometa is given as an infusion whereas aledronic acid is tablet form so easier to dispense. Usual advice is to see a dentist before starting the treatment and, once on it, to always remind your dentist/ hygienist that you are on a bisphosphonate
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Sep 2022 at 21:05

Brilliant update Michael, Great to hear your good news and more importantly, your positivity.

Heres to that further drop mate.

Slanj

Jamie.

User
Posted 30 Sep 2022 at 13:13

I thought i would sure a further wee update. It’s been a tricky month. Some of the progress made has reversed somewhat and PSA is stuck for the moment higher than I would like. Discussion with oncologist today and the general theme was that we wouldn’t and shouldn’t panic…yet. So will see how things are in a fortnight and then 2 weeks after that. As ever I am trying to stay as fit as possible and trying to keep a positive mindset. That’s been a wee bit difficult with a flare in symptoms but there is no point living every day in fear of what might come. The here and now is the best place for me to be at this time. Thoughts are will all of you and especially those who are in much worse positions than I am. Have a good weekend all.  Numbers in my profile. 

Edited by member 02 Oct 2022 at 16:03  | Reason: Slight update.

User
Posted 30 Sep 2022 at 13:52

Sorry to hear this Michael. Is your PSA still around the 6 mark then? It’s frustrating for you again as more waiting and wondering I’m sure. Maybe they will look into the chemo as an earlier option now. We were told and I hear others mention the benefit of going in with early chemo, I think that information came from one of the trials. Fingers crossed you see further improvement in 2 weeks time. Keep doing what you’re doing and stay positive. Wishing you all the best x

User
Posted 30 Sep 2022 at 14:16

Hi Elaine, yeah unfortunately.  One of things the consultant was saying was as I am younger I may have more testosterone keeping things at a higher level thus meaning the reduction in PSA stalls a little.  She seems keen to carry on with Abiraterone and Prostap for now.  Chemo is in the plan for so it may be sooner than I expected.  See what this month brings and take it from there. Onwards and upwards :) As I say there are many people a lot worse of than me, so I will stay positive :) thank you for taking the time to reply.  

User
Posted 30 Sep 2022 at 15:24

Well that sounds positive in itself that it seems something she has experienced before and presumably although slower your PSA will get there in time. 

I’m sure you will see a difference in the next few weeks 🀞🏼

All the best Michael and keep us posted x

User
Posted 30 Sep 2022 at 15:36

Ditto Elaine Michael keep positive lots iff thing's they can do  I was diagnosed Gleason 9 psa 24.9 2years on psa 00.1 after 37 lots off radiotherapy just finishing h/t and things are ok  keep moving forward πŸ‘gaz

User
Posted 30 Sep 2022 at 17:03

Thanks Elaine. Absolutely I’m sure I things will improve 

User
Posted 30 Sep 2022 at 17:04

Absolutely, as you say lots of options so onwards and upwards. Glad you are doing well 

User
Posted 30 Sep 2022 at 18:13

Thanks πŸ‘ gaz

User
Posted 31 Oct 2022 at 20:56

Hi Michael. Not sure how its the first time reading your post, as it feels like I’ve read thousands since my OH was diagnosed.   His ‘scores on the doors’ are very similar to yours but with higher PSA, we also live in Scotland but treatment plan seems different with his being Prostap and Chemotherapy.  

 

I hope you are following the Dr’s orders and resting until the MRI!

Edited by member 31 Oct 2022 at 20:58  | Reason: Not specified

 
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