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Just diagnosed a word of thanks

User
Posted 30 May 2018 at 11:13

Greetings 

I have just come back from the hospital having found out I have been diagnosed with PCa Gleason 7 (4+3)  PSA 10,  apparently the chances are its contained but I am due a CT and bone scan to confirm.

You never think its going to happen to you especially when you have had no symptoms at all, the only reason I had a PSA test was my wife's insistence  and news of Stephen Fry and Bill Turnbull.

After my PSA test results I consulted Google as you do and found this site it has been a great help in understanding what was going on and all the posts were very informative, although sometimes a tough read. It enabled me to go into the meeting this morning informed and definitely lessened the shock.  

 

So my message is thanks to all you contributors it has been a great help. I will keep my profile updated it may help someone along the way.

Good luck to you all.  

 

    

 

 

 

   

 

User
Posted 30 May 2018 at 11:13

Greetings 

I have just come back from the hospital having found out I have been diagnosed with PCa Gleason 7 (4+3)  PSA 10,  apparently the chances are its contained but I am due a CT and bone scan to confirm.

You never think its going to happen to you especially when you have had no symptoms at all, the only reason I had a PSA test was my wife's insistence  and news of Stephen Fry and Bill Turnbull.

After my PSA test results I consulted Google as you do and found this site it has been a great help in understanding what was going on and all the posts were very informative, although sometimes a tough read. It enabled me to go into the meeting this morning informed and definitely lessened the shock.  

 

So my message is thanks to all you contributors it has been a great help. I will keep my profile updated it may help someone along the way.

Good luck to you all.  

 

    

 

 

 

   

 

User
Posted 30 May 2018 at 13:11
Hi Janet

Yes your right very similar including brilliant service from the NHS, all being well I also will opt for surgery, good luck with the scans keep us posted

User
Posted 30 May 2018 at 15:12
My best wishes to you...

'Become informed - learn about the thing' is perhaps the best any of us can do.

Shock and worry are natural - so I hope you don't get too dragged-down.

:-)

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User
Posted 30 May 2018 at 11:57
Hello Bobm and belated welcome to the site

As you have found out for yourself, this site is brilliant for the help and advice it gives us, especially new people who are naturally in panic mode.

please come back and update us as you say, when you've had your scans.

Good luck

We can't control the winds - but we can adjust our sails
User
Posted 30 May 2018 at 12:09

Hi Bob,

My husband has the same Gleason score exactly with a PSA of 13.4 and no symptom.  Like you, he is booked for a bone scan to ensure no further spread but it looks localised.  Fingers crossed 🤞 

Of the two treatments offered he has elected to go for the surgery to remove the prostate and this is booked for Friday, 13 July.  It’s a good job we’re not superstitious!  

The NHS have been 1st class.  

i await your next post with interest as we seem to be on a parallel course....

 

janet

User
Posted 30 May 2018 at 13:11
Hi Janet

Yes your right very similar including brilliant service from the NHS, all being well I also will opt for surgery, good luck with the scans keep us posted

User
Posted 30 May 2018 at 15:12
My best wishes to you...

'Become informed - learn about the thing' is perhaps the best any of us can do.

Shock and worry are natural - so I hope you don't get too dragged-down.

:-)

User
Posted 31 May 2018 at 11:32
As someone with no symptoms diagnosed in January with the same Gleason score as you and Janet’s husband, I must say the NHS (hospital side) has been fantastic. The cancer seems to be contained, my bone scan is normal and I am undergoing surgery on Monday.

My surgeon says he can cure me, so fingers crossed for us all!

User
Posted 31 May 2018 at 12:06

Good Luck Bollinge

 

Keep us posted

User
Posted 01 Jun 2018 at 13:12

Similar situation to my own case: no symptoms and as fit now as when I was playing football in my 20's. I only went for a PSA test as a friend had passed away with PC and his wife kept nagging me. 

I was diagnosed in March with a Gleason 3+3 but nothing showing on the mpMRI; so now on AS which I am pretty relaxed about.

The NHS has been superb as has this wonderful site enabling one to shine a torch in what was once the dark: it is just so much more comforting when you can find out about your condition from sympathetic yet pragmatic experts.

Bollinge may I wish you the very best of luck with your operation; it would be great if you could keep us informed of your progress.

User
Posted 01 Jun 2018 at 18:16

Hi there,

Not been on the site for a while but just seen this trail. I am 60 and had the robotic prostatectomy on the 10th April. Brilliant NHS service from start to finish. Recovered really well, no continence issues at all. I feel blessed and very grateful for the skills of all involved.

iI really do feel like a new man. Only problems lie on the erection front, but that is totally expected and there are a number of things that can be done for that.

I hope all goes well for you. Good luck.

Jes

User
Posted 02 Jun 2018 at 14:45
Hi Jes,

Might I enquire where you had your surgery?

Cheers, John

User
Posted 02 Jun 2018 at 20:32

Hi John,

Surgery was under NHS at Royal Berks in Reading.

Cheers

Jes

User
Posted 25 Jun 2018 at 16:04

Hi  to everyone on this page 

  After a lot of persuasion and Bill Turnbulls very sad  story I finally managed to get my husband Aloan to have a PSA test and his test came back with a reading of 18. that doesn’t seem particularly high to some readings I’ve seen on this site however it was enough to concern our GP and the consultant so we were sent to see the consultant and Alan had a biopsy done. 12 samples were taken and one came back with cancer cells. His glee son score was 7(3+4). we saw the consultant again and he gave Allan his options  but suggested that he went on active surveillance. he also suggested that Alan have a template biopsy which was done last Thursday. we have just received a letter that follows “I am pleased to report that your recent template biopsies do not show prostate cancer.  this in no way means the initial biopsies  were incorrect just that the volume of tumour is likely to be extremely small.  The pathologist have commented that there is both an acute and chronic inflammatory changes within the prostate which probably accounts for the rather high PSA “ . Allan will now be seen in 4 months for another PSA test to monitor things. 

And that is where we are. Very happy that things are not more serious. But I just wanted to tell our story as so many words of help and concern when this all began came from all of you lovely people on this site. Some explanations not necessary what we wanted to heat or just not relevant to Allan but none the less effective as support. We all need kind strong words to help us and I thank everyone who pulled me along when my lovely man and I were so scared and panicky and unsure and definitely without enough knowlege. I will keep posting with updates and truly hope our story continues on this positive road but for anyone who is struggling with their story please remember to talk get informed and let all of us be with you on your journey. We all need help and to help. God bless Pat 

 

User
Posted 31 Jul 2018 at 09:08

Hi Bobm hope all goes well with the operation, I had mine on 14/06/18 all went well and recovering well just the normal side effects you are probably aware of, keep positive and try to continue your life as close to normal as possible you will have the odd day when your mood swings go up and down like a yoyo but with good family support you should be fine. best of luck in the future and hopefully you make a full recovery.

User
Posted 31 Jul 2018 at 10:36

Thanks for that Eddy 

I shall report back in a couple of days 

 

I hope all goes well with you keep your profile updated 

 

Cheers

User
Posted 14 Aug 2018 at 12:50

31/7/18                Finally had the Prostatectomy, it was due to be a Retzius sparing procedure but when I came to from the operation I realised that the catheter I had was of the Urethral variety whereas the Retzius procedure uses a Suprapubic catheter.  Talking to the consultant the next day he informed me that due to the position of the tumour and the fact they were removing a number of Lymph glands  it was decided that the normal approach was a better option.

The after effects of the operation have not been too bad I was discharged the next day with 6 sore wounds on my abdomen, after a day or two I had a scrotum of truly magnificent proportions but that has now returned to normal, the skin around the area is sore very like the pain I had with shingles which was like I had been mildly scalded .  

The daily injections took some getting used to but considering this is a normal part of many people’s lives it is a small price to pay, these last for 28 days  ( 14 more to go).  

I am due to have the catheter removed tomorrow (15/8/18). The catheter itself has sometimes been uncomfortable but that is all.  I have found it better to go commando so as not to pull the pipe to one side, and to wear tracksuit bottoms which generally hide the bags and  pipes etc.

I am due to see the consultant on 28/8/18 (squeaky bum time)  he was very upbeat about it after the operation but other people’s experiences on the forum have shown me that although all the scans etc show containment within the prostate only the biopsy shows  the  true condition, so I am trying keep an open mind on this. There is also the first PSA results to consider and the chance of biological recurrence but “hey ho” it is what it is.

A final comment the NHS were brilliant !!

User
Posted 20 Aug 2018 at 18:30
Hi Bobm

I hope you don't mind me sharing my experience on your thread. I am aged 58 T2c Gleason 3+4 PSA 6.4 and had robot assisted surgery 4 days ago (not Retzius sparing).

Recovery has been amazing so far. Discharged day one and needed a total of four paracetamol to date. Increasing exercise by walking a bit further each day. Stomach bloating was a problem for two days but helped by laxatives and high fibre. Catheter is a nuisance and the injections are OK with such a fine needle.

Like you there I will have some anxiety before the histology results but you just have to deal with the next hurdle.

I know many people don't have such a smooth postoperative course but for anyone approaching surgery hopefully they will find my experience reassuring.

I agree with your comment about the NHS, they have been professional, caring and are brilliant.

User
Posted 13 Sep 2018 at 11:11

1-9-2018
Saw consultant today unfortunately not the surgeon who carried out the operation as I really would have liked to thank him have been told to come back in 3 months maybe I'll get a chance then. 

the post op biopsy shows a Gleason of 7 3:4 as opposed to the original 4:3

Margins are negative with 42 Lymph nodes removed

So good news all round really although I don't think your ever out of the woods. I count myself very lucky and wish everybody going through the same experience good outcomes

User
Posted 18 Sep 2018 at 12:51

Hi Bobm great first results, how was your PSA blood test result did that come back negative as well. also how are you progressing with the water works and the impotence, I am finding the latter a up hill struggle no movement down below at all I live in hope. 

hope all goes well in the future and hopefully you can make a full recovery.

User
Posted 18 Sep 2018 at 13:45
Great news Bob
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Sep 2018 at 15:49

Hi eddy

I dont get a PSA test for 3 months apparently so thats still up in the air. Aas far as waterworks is concerned ok unless I'm tired as far as impotence is concerned not much doing sometimes I wake up in the night and think ah maybe but it soon passes  

How are you progressing otherwise are you having further treatment ?   

 
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