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User
Posted 14 Nov 2020 at 21:12

Was diagnosed on Wednesday 11th November this year. When I heard the news my world stopped, I’m upset, confused, frightened and just don’t know what to do, all I can see is doom and gloom. Told I’ll need radiotherapy or prostrate removal, my Gleason score is the high end of seven. I haven’t got a dedicated nurse yet or contact details as it was only 3 days ago I got the news, I just feel like my life is over. I’m waiting for a letter I’m guessing giving me grades and details and stuff, I’m dreading it and can only think the worst.

Edited by member 04 Dec 2020 at 17:06  | Reason: Update. Saw the surgeon today after deciding to go ahead with the op, spent a few sleepless days and

User
Posted 14 Nov 2020 at 22:49
Try not to get too stressed. The fact you're being offered a prostatectomy means that the cancer is localised and treatment will be given with curative intent. It is a shock to be diagnosed, but although the treatment is certainly life-changing, localised prostate cancer is not a death sentence. A Gleason score of 7 is not catastrophic.

It may seem difficult to believe now, but you will come to terms with it and get on with life. Everyone does.

If you need help understanding any medical stuff, phone the PCUK nurses on the Freephone number at the top of the page. They're incredibly helpful.

Best wishes,

Chris

User
Posted 15 Nov 2020 at 00:17

As Chris says it's a shock getting diagnosed but you will get over that shock, and life will get back to normal. Treatment isn't too bad, is very likelly to cure you completely and if you're lucky the side effects won't be too bad. Keep us informed. 

Dave

User
Posted 15 Nov 2020 at 00:30

Norrie

The one thing I remember from my diagnosis meeting is , you will still be here in 10- 15 years time.

Thanks Chris

User
Posted 15 Nov 2020 at 02:43

By your age more men are likely to have PCa than not but whether they know this or not, most will go on to die of something else. However, if PCa is found and treated at an early stage, the chances of eradicating it or at least slowing down its spread is improved. New treatments, including drugs and refinements of existing treatments mean men have a better chance of survival now than hitherto. We won't be able to see where you are until you post the full details of your diagnosis. It might help you come to terms with your situation if you learn more the disease and the way suitable patients can be treated. If you have questions there are people here who can help answer in a general way. Certain aspects must be put to your consultants and you may have to decide which option of those you are offered you wish to plump for. (There are pros and cons for each treatment and potential side effects). To help you here, I suggest you download or obtain a hard copy of the 'Tool Kit' from this Charity here :- https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

 

Edited by member 15 Nov 2020 at 02:46  | Reason: to highlight link

Barry
User
Posted 15 Nov 2020 at 12:19

It is .normal to feel devastated but once the shock has subsided you will be able to go forward as you are treated. My lovely husband lived for almost ten years with cancer and 9 of those years were good and we did a lot of things we never thought we could. 

I would say that it is better if you can do all things you want to do while you feel well. Everybody is different and responds differently. 

Good luck. X

User
Posted 15 Nov 2020 at 14:38
2004 at 58 Informed Gleason 8, collect pills (pre HT)from hospital pharmacy, take one today. 16 years on I can still go to the spot where I deliberated whether to take it not. So glad I did.

Whatever treatment you choose remember progress has been made over those years. You can do this.

Good luck.

Ray

User
Posted 15 Nov 2020 at 16:08

Hi Norrie,

It is a bit of a shock when we first get diagnosed  but it is still early days and you will need a few more tests and meetings to get your full report.

Seven is not a bad number to start with but seven comes two ways 3+4=7 or 4+3=7  they will tell you more at your meeting.

I had 3+4=7 and a Psa of 2.19 at the age of 70 in 2016 and had the choice of Robotic removal or Brachytherapy and after reading up about both options took the Brachytherapy route but neither options have any guarantees .

I have reached four years from my operation and my Psa is down to 0.18 with a new test this month.

If you click on my Avatar you can see  my journey to date.

Good luck John.

User
Posted 15 Nov 2020 at 16:59

I was G 4+3=7, the same as you, I guess, and had a prostatectomy two and a half years ago, and am now cancer-free. I did lose some penis length and can no longer get an erection.

The leading prostate cancer oncologist at The Royal Marsden cancer hospital told me I won’t die of it 😀

I guess I’ll have to die of something else, but not just yet!

Best of luck.

Cheers, John.

Edited by member 16 Nov 2020 at 00:01  | Reason: Not specified

User
Posted 15 Nov 2020 at 17:17

There are plenty of people on here that can offer support

It is a shock and I think was for nearly all of us

But sounds like you have some good options. I had surgery back in March and so far all is good

Ask anything on here and people will try and help

User
Posted 15 Nov 2020 at 20:52

Norrie the first few weeks were the worst for us.....waiting for scans, biopsy then the wait on results. But once we had a treatment plan we could breathe again. I hope you will feel the same way.

You will get lots of support and advice here. Take care.

User
Posted 15 Nov 2020 at 22:19

Hi Norrie,

What a shock. It's awful hearing those words.

Just to offer some hope and encouragement, My husband was diagnosed 6 years ago with a much higher Gleason and diagnosis. He's doing great! With your gleeson, and the fact you can have surgery, you have a very positive outlook. 

The thing about this cancer us it is very treatable especially caught at your sort of stage.

Try to get good sleep and get support from friends, family and here. It'll be tough going through next few weeks, but there's lots of hope!

All the best and keep us posted.

'Sorrow looks back, worry looks around, but faith looks up'
User
Posted 16 Nov 2020 at 07:57
Keep fit and consider starting Kegel exercise which can be helpful if you opt for surgery.
Barry
User
Posted 17 Nov 2020 at 10:41
Most prostate cancers are very slow growing, so don’t get too het up waiting for a diagnosis and potential treatment letter.

I waited from November to June so I could have the right surgeon, once I had considered all my options and second opinions.

Cheers, John.

User
Posted 17 Nov 2020 at 11:46
The waiting is torture I know but things do oddly get better.

The first shock recedes and you kind of learn to live with the knowledge of your diagnosis. You don't have to consciously do anything, it just happens. The mind is a wonderful thing. After a while, you find you are not consumed with thinking about it every hour of the day. Your life ticks along with it. At first you will wake in the night and it will hit you afresh each time. That goes too.

The early weeks are the worst, we've all been through them.

Take care

LW

User
Posted 17 Nov 2020 at 13:40

Originally Posted by: Online Community Member

I hope everyone who responded to my post get to see this, I’m not very good with technical stuff. I just wanted to say to everyone who responded to my post, thank you so much for your kind, thoughtful and helpful replies. It’s been a week now since I was told the news and that a letter would be sent to me explaining my diagnosis and options, the waiting is tortuous and I still haven’t heard anything, I did phone the hospital and they said give it a few more days. At the moment it’s one step forward ten steps back but it really helps to know I’m not alone in this thank you all again and best wishes to everyone.

The waiting is torture. If the letter is a copy of a letter to your GP, does your GP surgery have an online access system? I've found that the actual physical letters from consultants in Oxfordshire usually take about 2 weeks to arrive through the door. But often they are visible the next day in the GP's online system. Might be worth finding out.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 18 Nov 2020 at 17:51
Are you sure it was TO?

If it is prostate confined you be T 1 or 2

You will have a TNM grading.

The T is where is is in the prostate, one side, both lobes, breaking out

The N is for lymph node involvement, the number you want after that is O

And the M is for evidence of metastatic spread, again the number you want after that is O

Once you start treatment you will feel better still. It will feel you are doing something positive , fighting back as it were.

User
Posted 18 Nov 2020 at 20:45

Originally Posted by: Online Community Member

Yes it does say T0, it did confuse me as I couldn’t find any reference to T0 

T0 Doesn't make any sense. Must be a mistake. N0 and M0 are good though, means no spread.

https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/tnm-staging 

https://prostatecanceruk.org/prostate-information/prostate-tests/scans-to-see-if-your-cancer-has-spread 

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 18 Nov 2020 at 21:36

Originally Posted by: Online Community Member
Norrie the T staging comes from MRI report.

 

The T staging usually comes from combining the MRI results with the DRE (finger up the bum) and the patterns seen in the biopsy cores. T0 is used only rarely so it is possible that this is a typing mistake on the report; if not an error, it means they are undecided what staging to give it, or the staging is yet to be agreed by the multidisciplinary team. 

 

The fact that the nurse feels confident you will be suitable for curative treatment is a good sign!  

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

User
Posted 20 Nov 2020 at 12:52

Norris hi.

I was diagnosed 12 months ago and like you was devastated. 

I made a decision early on to have removal ,robotic surgery,  which due to delays with covid didn't take place till end of july 20. 

I am 14 weeks on, back at work , had no post op issues, pain,etc. Am nearly at normal with incontinence.  It has not been a problem as I was expecting. 

Stay positive.  I  probably like you and many others searching the internet.  Stay focussed on prostate cancer uk website or NHS.  I found lots of factual help. Also any issues concern you have speak to the helpdesk nurses . They are truly brilliant. 

Regards

User
Posted 20 Nov 2020 at 23:27
Glad you've made a decision. Don't try to play the "what if..." game; just go with the flow and get yourself sorted. You've got a treatable condition and it's being treated. The future is good - look forward to it. You'll get through it absolutely fine. Stop worrying!

Cheers,

Chris

User
Posted 21 Nov 2020 at 08:55

You've made a good decision 

I am 65 and had never been in hospital before or had anaesthetic, and everything went so good, when I look back , i was worrying too much. Put your faith in the hospital staff who know what they are doing, and stay strong. 

Not sure if you are a fit/active person, but I would recommend you "train " yourself for surgery. get yourself fit, not super fit, but healthy. Go for walks, jogs etc, and this gives you a feel good factor too, mentally.  Do your exercises , pelvic floor, they really do help. I completed hundreds of reps , not because I had too, but they really do help, post surgery. Yes I wasnt looking forward to catheter either. I had mine in, came out and was home with catheter for 10 days. During this time I was able to move around, go for short walks, and there was no pain for me. I had the catheter out, it was done in under 2 seconds, and there again was no pain. No after effect. Not sure whether this is the norm, but for me , it was. 

Stay positive, as you can, take comfort from those posting here,  stay strong 

User
Posted 21 Nov 2020 at 14:23

Norrie

Just try and stay calm and think about the future ( I know its easy to say but have been where you are)

You have made a decision so think about what you can do to optimise the outcome. Are you fit ?if so get fitter and if not start doing some walking (assuming no medical issues) and pelvic floor exercises

The catheter is no big deal. Its inconvenient and feels a bit odd but it will be fine.

Try and channel that worry into something you can focus on.

Have you some specific concerns that maybe people on here or your nurse can help with?

Best of luck

 

User
Posted 24 Nov 2020 at 09:46

Norrie , as I previously mentioned, I had no symptoms, no issues , my PSA was 5.5 average, my Gleason 4+3. 

I decided to go for Surgery, as I understand, should anything return after surgery I can be offered Radio or Chemo therapy. The alternative is not so easy or possible. 

I met with my consultant surgeon who put me at ease very quickly. I had to wait from mid March till end of July for surgery. 

Surgery happened, recovery now 14 weeks, on, no discomfort, very little if any incontinence, I'm back at work, and I regularly exercise, running, aerobics etc. 

For me it was the best and right decision, and I would recommend, but I guess its down to you. 

Stay positive , and as I mentioned previously I think, start doing the pelvic floor exercises and try to be in a healthy and fit state of mind and body . It really has helped me 

 

regards 

User
Posted 24 Nov 2020 at 18:12
You've made your decision. Stick with it. Don't start worrying about whether or not you've made the right choice - that's the road to anxiety and stress. Surgery and RT have pretty much identical success rates. Try to get on with life and get yourself sorted.

Cheers,

Chris

User
Posted 01 Dec 2020 at 15:09

We all worry whether we made the right decision but I believe there is no harm in changing it either. I was up for the operation to remove and  two weeks later decided on Bracytherapy . Best decision I have ever made but I did speak with 3 different doctors BUT MADE MY DECISION. If anybody needs help on low dose Bracy love to help.

 

Gleason 3+4 psa 6.8 good luck everyone

User
Posted 04 Dec 2020 at 14:11

Norrie , I was diagnosed as 4+3 and had my prostate removed by the robot,you stay in hospital for one night and wear a horrible catheter for a week,after that I went back to work, I am now less than >0.1 PSA and clear,pat yourself on the back for getting an early diagnosis you have done very well and you can now beat it,the biggest thing is to find it and treat it,I was 56 (three years ago) when I found mine with no symptoms and only seeing the prostate badge encouraged me to get a test and now I have won the fight,you are in a very good position.  Once you find it at an early stage and treat it as you have you are in a very good place,the bad place is to leave it and let it grow. 

Show Most Thanked Posts
User
Posted 14 Nov 2020 at 22:49
Try not to get too stressed. The fact you're being offered a prostatectomy means that the cancer is localised and treatment will be given with curative intent. It is a shock to be diagnosed, but although the treatment is certainly life-changing, localised prostate cancer is not a death sentence. A Gleason score of 7 is not catastrophic.

It may seem difficult to believe now, but you will come to terms with it and get on with life. Everyone does.

If you need help understanding any medical stuff, phone the PCUK nurses on the Freephone number at the top of the page. They're incredibly helpful.

Best wishes,

Chris

User
Posted 14 Nov 2020 at 23:06

Thank you what you’ve told me has helped.

User
Posted 15 Nov 2020 at 00:17

As Chris says it's a shock getting diagnosed but you will get over that shock, and life will get back to normal. Treatment isn't too bad, is very likelly to cure you completely and if you're lucky the side effects won't be too bad. Keep us informed. 

Dave

User
Posted 15 Nov 2020 at 00:30

Norrie

The one thing I remember from my diagnosis meeting is , you will still be here in 10- 15 years time.

Thanks Chris

User
Posted 15 Nov 2020 at 02:43

By your age more men are likely to have PCa than not but whether they know this or not, most will go on to die of something else. However, if PCa is found and treated at an early stage, the chances of eradicating it or at least slowing down its spread is improved. New treatments, including drugs and refinements of existing treatments mean men have a better chance of survival now than hitherto. We won't be able to see where you are until you post the full details of your diagnosis. It might help you come to terms with your situation if you learn more the disease and the way suitable patients can be treated. If you have questions there are people here who can help answer in a general way. Certain aspects must be put to your consultants and you may have to decide which option of those you are offered you wish to plump for. (There are pros and cons for each treatment and potential side effects). To help you here, I suggest you download or obtain a hard copy of the 'Tool Kit' from this Charity here :- https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

 

Edited by member 15 Nov 2020 at 02:46  | Reason: to highlight link

Barry
User
Posted 15 Nov 2020 at 12:19

It is .normal to feel devastated but once the shock has subsided you will be able to go forward as you are treated. My lovely husband lived for almost ten years with cancer and 9 of those years were good and we did a lot of things we never thought we could. 

I would say that it is better if you can do all things you want to do while you feel well. Everybody is different and responds differently. 

Good luck. X

User
Posted 15 Nov 2020 at 14:38
2004 at 58 Informed Gleason 8, collect pills (pre HT)from hospital pharmacy, take one today. 16 years on I can still go to the spot where I deliberated whether to take it not. So glad I did.

Whatever treatment you choose remember progress has been made over those years. You can do this.

Good luck.

Ray

User
Posted 15 Nov 2020 at 16:08

Hi Norrie,

It is a bit of a shock when we first get diagnosed  but it is still early days and you will need a few more tests and meetings to get your full report.

Seven is not a bad number to start with but seven comes two ways 3+4=7 or 4+3=7  they will tell you more at your meeting.

I had 3+4=7 and a Psa of 2.19 at the age of 70 in 2016 and had the choice of Robotic removal or Brachytherapy and after reading up about both options took the Brachytherapy route but neither options have any guarantees .

I have reached four years from my operation and my Psa is down to 0.18 with a new test this month.

If you click on my Avatar you can see  my journey to date.

Good luck John.

User
Posted 15 Nov 2020 at 16:59

I was G 4+3=7, the same as you, I guess, and had a prostatectomy two and a half years ago, and am now cancer-free. I did lose some penis length and can no longer get an erection.

The leading prostate cancer oncologist at The Royal Marsden cancer hospital told me I won’t die of it 😀

I guess I’ll have to die of something else, but not just yet!

Best of luck.

Cheers, John.

Edited by member 16 Nov 2020 at 00:01  | Reason: Not specified

User
Posted 15 Nov 2020 at 17:17

There are plenty of people on here that can offer support

It is a shock and I think was for nearly all of us

But sounds like you have some good options. I had surgery back in March and so far all is good

Ask anything on here and people will try and help

User
Posted 15 Nov 2020 at 20:52

Norrie the first few weeks were the worst for us.....waiting for scans, biopsy then the wait on results. But once we had a treatment plan we could breathe again. I hope you will feel the same way.

You will get lots of support and advice here. Take care.

User
Posted 15 Nov 2020 at 22:19

Hi Norrie,

What a shock. It's awful hearing those words.

Just to offer some hope and encouragement, My husband was diagnosed 6 years ago with a much higher Gleason and diagnosis. He's doing great! With your gleeson, and the fact you can have surgery, you have a very positive outlook. 

The thing about this cancer us it is very treatable especially caught at your sort of stage.

Try to get good sleep and get support from friends, family and here. It'll be tough going through next few weeks, but there's lots of hope!

All the best and keep us posted.

'Sorrow looks back, worry looks around, but faith looks up'
User
Posted 16 Nov 2020 at 07:57
Keep fit and consider starting Kegel exercise which can be helpful if you opt for surgery.
Barry
User
Posted 17 Nov 2020 at 10:28

I hope everyone who responded to my post get to see this, I’m not very good with technical stuff. I just wanted to say to everyone who responded to my post, thank you so much for your kind, thoughtful and helpful replies. It’s been a week now since I was told the news and that a letter would be sent to me explaining my diagnosis and options, the waiting is tortuous and I still haven’t heard anything, I did phone the hospital and they said give it a few more days. At the moment it’s one step forward ten steps back but it really helps to know I’m not alone in this thank you all again and best wishes to everyone.

User
Posted 17 Nov 2020 at 10:41
Most prostate cancers are very slow growing, so don’t get too het up waiting for a diagnosis and potential treatment letter.

I waited from November to June so I could have the right surgeon, once I had considered all my options and second opinions.

Cheers, John.

User
Posted 17 Nov 2020 at 11:46
The waiting is torture I know but things do oddly get better.

The first shock recedes and you kind of learn to live with the knowledge of your diagnosis. You don't have to consciously do anything, it just happens. The mind is a wonderful thing. After a while, you find you are not consumed with thinking about it every hour of the day. Your life ticks along with it. At first you will wake in the night and it will hit you afresh each time. That goes too.

The early weeks are the worst, we've all been through them.

Take care

LW

User
Posted 17 Nov 2020 at 13:40

Originally Posted by: Online Community Member

I hope everyone who responded to my post get to see this, I’m not very good with technical stuff. I just wanted to say to everyone who responded to my post, thank you so much for your kind, thoughtful and helpful replies. It’s been a week now since I was told the news and that a letter would be sent to me explaining my diagnosis and options, the waiting is tortuous and I still haven’t heard anything, I did phone the hospital and they said give it a few more days. At the moment it’s one step forward ten steps back but it really helps to know I’m not alone in this thank you all again and best wishes to everyone.

The waiting is torture. If the letter is a copy of a letter to your GP, does your GP surgery have an online access system? I've found that the actual physical letters from consultants in Oxfordshire usually take about 2 weeks to arrive through the door. But often they are visible the next day in the GP's online system. Might be worth finding out.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 18 Nov 2020 at 16:35

Hi Barry, thank you for your reply, I’ve tried to post an update but not sure if I’m doing it right as I’m really not too tech savvy. I have more information I’d like to share with the lovely people who responded to my post but don’t know how to let them all know. I think I received good news.. Gleason 4+3=7, the confusing one was T0 ? The only references I could find were T2, T3 etc. Got through to my specialist nurse, she said as far as she knows the cancer hasn’t spread beyond my prostrate and that she was confident they could offer me curative treatment ? My core scores ? Were 5 out of 19 ? I do feel a bit more positive about things now, but bizarrely I feel so so guilty about being a little bit positive when I see so so many people on here with bigger higher numbers than I think I have, thank you again.

User
Posted 18 Nov 2020 at 17:51
Are you sure it was TO?

If it is prostate confined you be T 1 or 2

You will have a TNM grading.

The T is where is is in the prostate, one side, both lobes, breaking out

The N is for lymph node involvement, the number you want after that is O

And the M is for evidence of metastatic spread, again the number you want after that is O

Once you start treatment you will feel better still. It will feel you are doing something positive , fighting back as it were.

User
Posted 18 Nov 2020 at 18:42

Yes it does say T0, it did confuse me as I couldn’t find any reference to T0 

User
Posted 18 Nov 2020 at 20:37

Hi Norrie

sounds like good results ...  hopefully many good years ahead for you!

x

User
Posted 18 Nov 2020 at 20:45

Originally Posted by: Online Community Member

Yes it does say T0, it did confuse me as I couldn’t find any reference to T0 

T0 Doesn't make any sense. Must be a mistake. N0 and M0 are good though, means no spread.

https://www.cancerresearchuk.org/about-cancer/prostate-cancer/stages/tnm-staging 

https://prostatecanceruk.org/prostate-information/prostate-tests/scans-to-see-if-your-cancer-has-spread 

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 18 Nov 2020 at 20:53

Norrie the T staging comes from MRI report. Have you had MRI yet? My husband had the TRUS biopsy first as it was the start of lockdown and they couldn’t offer him a MRI. He had one later down the line.

User
Posted 18 Nov 2020 at 20:59

I don’t know what MRI is, I just know I was put in a long noisy scary tube, sorry I can’t be more specific I’m just a stranger in a very strange land .

User
Posted 18 Nov 2020 at 21:36

Originally Posted by: Online Community Member
Norrie the T staging comes from MRI report.

 

The T staging usually comes from combining the MRI results with the DRE (finger up the bum) and the patterns seen in the biopsy cores. T0 is used only rarely so it is possible that this is a typing mistake on the report; if not an error, it means they are undecided what staging to give it, or the staging is yet to be agreed by the multidisciplinary team. 

 

The fact that the nurse feels confident you will be suitable for curative treatment is a good sign!  

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

User
Posted 18 Nov 2020 at 21:58
I registered for the ‘EMIS Patient Access’ app, which means I can see all my medical records at the same time my doctor gets any test results.

Not all practices offer full access though for some strange reason, so check with your GP if you can register for it.

Best of luck.

Cheers, John.

User
Posted 18 Nov 2020 at 22:18
The long noisy scary tube is an MRI scanner ("magnetic resonance imaging") 😁. Basically uses an intense magnetic field and radio waves to see inside you.

Cheers,

Chris

User
Posted 18 Nov 2020 at 22:24

Read Chris's reply again. He's exactly right!  This is FAR from doom and gloom.  Yes, there will be some changes whatever the treatment, but often temporary.  It's only been a few days so being in shock is normal, especially when you don't have enough information yet to understand the situation. 

Albert

User
Posted 18 Nov 2020 at 22:37

Originally Posted by: Online Community Member
The long noisy scary tube is an MRI scanner ("magnetic resonance imaging") 😁. Basically uses an intense magnetic field and radio waves to see inside you.

If you had a cannular fitted and a machine gave you an injection about 3/4 way through the MRI, this was a contrast dye (gadolinium) and the scan was a multi-parametric MRI (mpMRI) scan.

This helps with imaging any cancer in the prostate, although radiologists are now saying they can get just as good images from 3T MRI scans using bi-parametric scans, which don't have a contrast dye used.

User
Posted 20 Nov 2020 at 12:52

Norris hi.

I was diagnosed 12 months ago and like you was devastated. 

I made a decision early on to have removal ,robotic surgery,  which due to delays with covid didn't take place till end of july 20. 

I am 14 weeks on, back at work , had no post op issues, pain,etc. Am nearly at normal with incontinence.  It has not been a problem as I was expecting. 

Stay positive.  I  probably like you and many others searching the internet.  Stay focussed on prostate cancer uk website or NHS.  I found lots of factual help. Also any issues concern you have speak to the helpdesk nurses . They are truly brilliant. 

Regards

User
Posted 20 Nov 2020 at 20:26

Tried to add to my original post, really not sure about all this tech stuff, anyway after going through all the paperwork I was sent, had a sleepless disturbed night and a conversation with my nurse this morning, I’ve decided to go with the operation, really worried about it and I really don’t like the thought of the catheter. There was some confusion about my T number ? It said T0 which was confusing ? The nurse said it meant that they hadn’t found any lumps or ‘ridges’ ‘rough areas’ on my prostate so it must all be inside ? The Scan I had said there was a ‘lesion’ on it ? Anyway surgery it is, so worried and thinking the worst ‘what if’ etc. Hate to be going on about myself when there are so many others in here going through the same thing, maybe if I can get better I might be in a position to be of help in the future, once again I just can’t thank you all enough,

User
Posted 20 Nov 2020 at 23:27
Glad you've made a decision. Don't try to play the "what if..." game; just go with the flow and get yourself sorted. You've got a treatable condition and it's being treated. The future is good - look forward to it. You'll get through it absolutely fine. Stop worrying!

Cheers,

Chris

User
Posted 21 Nov 2020 at 08:55

You've made a good decision 

I am 65 and had never been in hospital before or had anaesthetic, and everything went so good, when I look back , i was worrying too much. Put your faith in the hospital staff who know what they are doing, and stay strong. 

Not sure if you are a fit/active person, but I would recommend you "train " yourself for surgery. get yourself fit, not super fit, but healthy. Go for walks, jogs etc, and this gives you a feel good factor too, mentally.  Do your exercises , pelvic floor, they really do help. I completed hundreds of reps , not because I had too, but they really do help, post surgery. Yes I wasnt looking forward to catheter either. I had mine in, came out and was home with catheter for 10 days. During this time I was able to move around, go for short walks, and there was no pain for me. I had the catheter out, it was done in under 2 seconds, and there again was no pain. No after effect. Not sure whether this is the norm, but for me , it was. 

Stay positive, as you can, take comfort from those posting here,  stay strong 

User
Posted 21 Nov 2020 at 14:23

Norrie

Just try and stay calm and think about the future ( I know its easy to say but have been where you are)

You have made a decision so think about what you can do to optimise the outcome. Are you fit ?if so get fitter and if not start doing some walking (assuming no medical issues) and pelvic floor exercises

The catheter is no big deal. Its inconvenient and feels a bit odd but it will be fine.

Try and channel that worry into something you can focus on.

Have you some specific concerns that maybe people on here or your nurse can help with?

Best of luck

 

User
Posted 24 Nov 2020 at 09:31

Morning folks, hope you are all as well as can be expected. Could do with some advice please, I’ve said I’ll have surgery to remove the prostate but have spent a sleepless night wondering if I’ve made the right decision ? Gleason 4-3, psa 2.5 and a T0 ? The o was confusing but the nurse said although they could see a ‘lesion’ on the prostrate they couldn’t feel any lumps or ridges so it’s a T0. I’m wondering now should I have radiotherapy or go ahead with the operation ? Pro’s and con’s of both would be helpful please. I was told that if I have radiotherapy and it comes back then it’s more difficult to remove the prostate. If I have radiotherapy and it comes back, is there anything else can be done ? The hospital I go to has a far above the national average numbers for prostrate removal, don’t know if I could or should read anything into that ? Thanks in advance for any comments.

User
Posted 24 Nov 2020 at 09:46

Norrie , as I previously mentioned, I had no symptoms, no issues , my PSA was 5.5 average, my Gleason 4+3. 

I decided to go for Surgery, as I understand, should anything return after surgery I can be offered Radio or Chemo therapy. The alternative is not so easy or possible. 

I met with my consultant surgeon who put me at ease very quickly. I had to wait from mid March till end of July for surgery. 

Surgery happened, recovery now 14 weeks, on, no discomfort, very little if any incontinence, I'm back at work, and I regularly exercise, running, aerobics etc. 

For me it was the best and right decision, and I would recommend, but I guess its down to you. 

Stay positive , and as I mentioned previously I think, start doing the pelvic floor exercises and try to be in a healthy and fit state of mind and body . It really has helped me 

 

regards 

User
Posted 24 Nov 2020 at 18:12
You've made your decision. Stick with it. Don't start worrying about whether or not you've made the right choice - that's the road to anxiety and stress. Surgery and RT have pretty much identical success rates. Try to get on with life and get yourself sorted.

Cheers,

Chris

User
Posted 24 Nov 2020 at 18:45

Thanks Chris, it was a temporary blip, still a bit up and down but trying to focus on just getting it done, and being a bit more positive, it’ll take time but hopefully I’m moving forward slowly but surely, thank you for your encouragement.

User
Posted 01 Dec 2020 at 15:09

We all worry whether we made the right decision but I believe there is no harm in changing it either. I was up for the operation to remove and  two weeks later decided on Bracytherapy . Best decision I have ever made but I did speak with 3 different doctors BUT MADE MY DECISION. If anybody needs help on low dose Bracy love to help.

 

Gleason 3+4 psa 6.8 good luck everyone

User
Posted 04 Dec 2020 at 14:11

Norrie , I was diagnosed as 4+3 and had my prostate removed by the robot,you stay in hospital for one night and wear a horrible catheter for a week,after that I went back to work, I am now less than >0.1 PSA and clear,pat yourself on the back for getting an early diagnosis you have done very well and you can now beat it,the biggest thing is to find it and treat it,I was 56 (three years ago) when I found mine with no symptoms and only seeing the prostate badge encouraged me to get a test and now I have won the fight,you are in a very good position.  Once you find it at an early stage and treat it as you have you are in a very good place,the bad place is to leave it and let it grow. 

User
Posted 04 Dec 2020 at 16:31

Thanks for your comments and words of encouragement, really means a lot, saw the surgeon today and feel a bit more at ease with it all and beginning to think I might be ok, surgeon said I was lucky as they found it by accident and it’s at an early stage, so I’m grateful but sad for others less fortunate. I’m sure you know only too well the devastation a diagnosis causes, it was/is like something I’ve never ever known before, words couldn’t describe it, anyway thanks for your comment, best wishes to you and yours :)

Edited by member 22 Jan 2021 at 14:10  | Reason: I had the prostatectomy 6 weeks ago, no results till February. I had a catheter in for four weeks, i

 
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