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18 months post surgery.

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User
Posted 23 Jun 2023 at 21:48

Cool nice to hear something positive I been negative about it today as basically don't understand it !

Vern.

User
Posted 23 Jun 2023 at 22:30
Good Heavens! Feeling negative???? This is an excellent result - basically your PSA is 100 times lower than the threshold for success! Have a pint or a glass of wine and enjoy the moment
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Jun 2023 at 09:47

Thank you Lyn , for a beginner it's difficult to understand these things and helps when someone can give a experienced view . For myself and my wife there was a number 9 at the end so must have meant Cancer still there.

Forgive my ignorance of medical matters !

Vern.

User
Posted 24 Jun 2023 at 10:31
I know - everything seems so frightening when you are new to it. You can reassure your wife that she would have a higher PSA than yours if she was breastfeeding or had just had a great orgasm!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Aug 2023 at 17:20

Hi All,

I'm due my next PSA test which will be 7 months from Surgery and bit confused as to which test to have , I can have test at GPs which is a less sensitive test or private hospital test which is much more sensitive my last result there was 0.009 while previous one at GPs was < 0.1.

Takes 3 days to get results from GPs. But took 3 weeks to get private results from Consultant's office.

Any thoughts please.

 

Vern.

 

Vern.

User
Posted 07 Aug 2023 at 17:32

The consensus on here seems to be consistent in where you test. I always use my GP but fortunately they are testing more sensitivity than your GP,  down to 0.04.

User
Posted 07 Aug 2023 at 17:51

It is a great result. It seems you live on your own. If so, it is tough. Send me a private message if you wish to chat. Be positive and try and not push yourself so hard physically.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 07 Aug 2023 at 19:48

Seems to me you’re doing very well….Onwards and Downwards!😊

User
Posted 08 Sep 2023 at 13:25

Hi All,

Time passing quickly and I'm doing ok . Just had my seven month PSA and it's 0.007 three months ago it was 0.009.

Kind Regards to you all.

 

 

Vern.

User
Posted 08 Sep 2023 at 13:31

Great result Vern.

Dave

User
Posted 08 Sep 2023 at 17:09

Hoping you luck and successful "cure" like me - my PSA has remained the same, <0.003, for the past 12 years. I still worry though!!

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 08 Sep 2023 at 18:11

Vern, great result.

Thanks Chris.

User
Posted 30 Oct 2023 at 17:43

Hi All,

I'm now 9 months post op and was doing ok but last couple months have crashed on hopeless thoughts involving my health both physical and mental, very disturbed sleep which doesn't help I'm 4 years into retirement and should be doing better .

Any advice to how I go about improving things would be appreciated, feeling I need more than 10 minutes in GP surgery.

 

Regards to you all.

 

 

Vern.

User
Posted 30 Oct 2023 at 19:19

Hi Vern,

I am 2 years post surgery, but I do recall many dark days and moods approaching the first anniversary - ( even though like you my PSA was undetectable at 0.006) - perhaps a delayed post trauma reaction. Perhaps it is with darkening days of autumn ?  Don't beat yourself up - I think it is just being human.

I retired post surgery, and keep myself busy with art painting as my main pastime, getting out and walking in nature for birds, orchids, butterflies, or fungi now as autumn progresses. Always trying to find small pleasures each day. What are your main hobbies ?

The first year was hard with slow recovery over incontinence, now only 1 pad a day, minor leaking.  Ongoing ED a definite source of dark moods, but in this 2nd year there is recovery and progress in this area too.

I think it is thought, "oh one is healed from the surgery, so all should be ok", but it is more complicated and more drawn out than that.  So I concur with the rollercoaster of moods and thoughts. Here for you.  

P.

Edited by member 30 Oct 2023 at 19:21  | Reason: Not specified

User
Posted 30 Oct 2023 at 19:33

A very kind reply and makes sense lots of things piling in on me including the ED and now 5 weeks from next PSA test, like you I love getting out and walking I tend to walk by the sea at least three times a week and happy place for me .

Also suffer from extreme anxiety over bad weather which we have plenty of at moment not sure anything can be done about that .

Again thanks for taking the time .

Vern.

User
Posted 30 Oct 2023 at 19:34

Ey up Vern.

Like you, I'm 9 months post RARP.

An examination of the removed prostate revealed Gleason 9 (4+5), Grade Group 5, Extraprostatic extension pT3a, left posterior, radial distance 1 mm. I've been told there's a 50% chance of recurrence but fortunately my last three PSA checks have been: <0.02, <0.05, <0.02 which are classed as undetectable.

My incontinence has virtually gone but I still wear a pad during the day just in case.

I'm prescribed Invicorp which is generally successful.

I'm fairly upbeat, I think my gallows sense of humour helps. However, like the vast majority of cancer suffers, there are times when I feel down in the dumps. Sites like this and speaking to online specialist nurses have helped lift my mood enormously.

Speak to one of these nurses they don't, unlike most GPs, have 10 minute time limits.

Best of luck pal.

Adrian

 

Edited by member 30 Oct 2023 at 19:51  | Reason: Spelling.

User
Posted 30 Oct 2023 at 19:40

Thanks Adrian,

I might give nurses a call I'm old school and don't find asking for help very easy .

Vern.

User
Posted 07 Dec 2023 at 15:14

Hi All,

Time moves on and I'm 10 months post surgery I had PSA results today and its   < 0.006 down again from 0.007 last time and 0.009 six months ago, Consultant very pleased and put me on six monthly testing now.

My best wishes to you all.

 

Vern.

Edited by member 07 Dec 2023 at 17:22  | Reason: Not specified

Vern.

User
Posted 07 Dec 2023 at 19:03

Great result mate. 🙂👍

User
Posted 18 Dec 2023 at 11:44

I'd like to thank everyone for their help and encouragement on my journey this year it really has helped, helping each other is so important when things are difficult so let's keep it up.

So looking forward to going to football with my son on boxing day and making more memories.

Wishing you all a Happy Christmas.

Vern.

User
Posted 15 Jan 2024 at 13:23

Hi All,

One year on from surgery and one month from a undetectable PSA <0.006 and consultant saying move to 6 monthly PSA testing I've not been feeling great and appointment with GP shows blood in urine and thoughts please.

Vern.

User
Posted 15 Jan 2024 at 13:39

Hello again mate.

When you say you feel unwell, what exactly do you mean? Is the GP doing anything about the blood in your urine.

User
Posted 15 Jan 2024 at 13:44

Hi Buddy,

GP has sent urine sample to the Lab and having bloods tomorrow, just tired and general aches and pains.

Vern.

User
Posted 15 Jan 2024 at 13:59

Me and you seem to be on a very similar journey and we're both a very similar age. I had RARP on 15 Feb 2023 so almost a year on. Like you I've had 3x3 monthly PSA checks, all undetectable, and got a fourth in a couple of weeks time. I get very tired, but I'm putting a lot of that down to the general stress of dealing with the side effects of treatment over the past year and not sleeping as well as I used to. I think blood in urine can be caused by numerous things most are not serious. You seem to be doing very well to me and I'm sure your GP will sort out your latest concern. It maybe you're feeling a little depressed and that can make you feel fatigued and generally unwell.

Adrian

 

User
Posted 15 Jan 2024 at 14:33

Yes hopefully not to serious, I thought same about our journey's being similar I'll update later this week when results back .

 

Vern.

User
Posted 19 Jan 2024 at 15:14

This week's blood tests all ok , Lab urine test showed no infection but blood , GP has marked it down as no infection so will he follow up the blood presume so but not sure, Do i wait see  if GP gets back to me or contact my private guy that did the surgery 12 months ago ?

Reminder my last PSA was < 0.006 

Vern.

User
Posted 19 Jan 2024 at 16:36

Hi Vern, thanks for the update.

I would assume your GP would follow up the reason to why there's a bit of blood in your urine. A couple of my mates had a similar problem, they had a couple of tests, found nothing untoward, and situation resolved itself.

Adrian 

User
Posted 21 Jan 2024 at 12:36

Hi,

Would tne bladder have been included in MRI scan looking at Prostate? Had mine year ago and can't remember if included.

Vern.

User
Posted 31 Jan 2024 at 07:13

Tried posting new but it was rejected so will do shortened version here .

One yr today surgery PSA < 0.006 end November, consultant happy " cancer free move to 6 monthly PSA testing, all seemed good but by Xmas feeling tired and aches and pains , went to GP blood on dip test and confirmed in lab has led to being out on suspected cancer two week pathway and appointment on 12th February for camara job , spoke to private consultant who did op he said happy for you to go NHS but he offered appointment tomorrow 1st February so taken that.

Sense of doom building at home feel this is heading only one way .

Thanks for listening this past year.

Vern.

User
Posted 31 Jan 2024 at 07:39

Hi Vern.

So are they now looking at possible bladder cancer? Let's hope they find another cause

My wife and I have both had the two week cancer pathway scares for suspected tumours, both were negative. Fingers crossed yours will be the same.

I've just seen your earlier query on whether our prostate MRIs would have covered the bladder. I'm afraid I'm not sure on that one.

Best of luck mate.

Edited by member 31 Jan 2024 at 07:52  | Reason: Typo

User
Posted 31 Jan 2024 at 07:47

Morning,

Yes GP said no infection so need to be looking at bladder. Just to add GP surgery didn't call me back after lab urine and blood tests as they didn't when my PSA went from 3 to 4.7 in 6 months told me it was normal hense why I went private and spent 25k on that. Bitter ? Just a bit 

Vern.

User
Posted 31 Jan 2024 at 07:53

Vern, let's hope it turns out to be just a urine issue. One thing that a few of us here have had is migration of surgical hem o lok clips into the bladder or urethra .The camera will pick that up.

Alot of us just keep posting on the same thread,it does make it easier to follow the back story.

Thanks Chris 

User
Posted 31 Jan 2024 at 08:03

Originally Posted by: Online Community Member

Bitter ? 

Yes please. If you're buying.

Joking apart mate. I'll bet you a pint, no in fact, I'll bet you a gallon, that the blood in urine is nowt too serious. My opinion is a lot of GPs use cancer pathways to cover their own backs, but you can't blame them for that I suppose.

Like you, mistakes have been made during my treatment, But, touch wood, we're both making a very good recoveries. 👍 

Edited by member 31 Jan 2024 at 08:22  | Reason: Typo

User
Posted 31 Jan 2024 at 10:47

Great your PSA is still undetectable 👍

As for the bladder issue, Rob had a CT scan after his original diagnosis. This put him on the 2 week cancer pathway for his bowel…he had colonoscopy and no cancer found.

Best of luck tomorrow x

User
Posted 01 Feb 2024 at 17:03

Hi All,

Been for camara job at hospital today carried out by surgeon who proformed the Prostate operation a year ago .

He said no sign Bladder cancer but possibly sign of a virus caused the trace of blood , surgery looks fine no clips flisting around .

He is recommending GP looks at inflammatory markers for overall symptoms.

Relieved he was happy but it doesn't change the way you feel.

Vern.

User
Posted 01 Feb 2024 at 17:49

Great result Vern.

User
Posted 01 Feb 2024 at 19:18

Really Pleased for you Vern, hope you get sorted soon whatever it is.

Derek

User
Posted 14 Feb 2024 at 11:59

PSA.

Nov test at normal hospital.  <0.006

Feb test different hospital   <0.01

Is this different testing levels due to machine?

I seem to remember someone saying better to stick to same testing site but didn't work that way.

 

Vern.

User
Posted 14 Feb 2024 at 12:20

Originally Posted by: Online Community Member
PSA.

Nov test at normal hospital.  <0.006

Feb test different hospital   <0.01

Is this different testing levels due to machine?

I seem to remember someone saying better to stick to same testing site but didn't work that way.

I think both labs are measuring to their lowest, Vern.

User
Posted 14 Feb 2024 at 12:36
So long as you have the < all is good! Using the same lab is ideal but there is no practical difference between<0.006 and <0.01.

Enjoy those results...

User
Posted 25 Feb 2024 at 08:57

Morning,

Had a CT scan three weeks ago after the GP referral on the two week pathway no results back and been told a backlog so could be six weeks.

Interesting how long things taking this was NHS could of had private and results within a week. 

 

Vern.

User
Posted 17 Apr 2024 at 07:48

Hi All,

15 months post surgery now and doing ok , looking for views on frequently of PSA testing my last one was on 12 months and consultant said can move to 6 monthly but I've read often it's said 3 monthly for first couple years.

All the best to everyone.

Vern.

User
Posted 17 Apr 2024 at 08:05

Morning mate.

Glad to see that you're recovering well.

I had my op about the same time as you, and I'm still having 3 monthly PSA checks. Having said that a friend, who had the same op at the same hospital, after a year was only tested every 6 months.

I think it might vary, dependent on the histology of the removed prostate.

I think NICE guidelines state checks should be at least every 6 months for the first 2 years.

All the best.

User
Posted 17 Apr 2024 at 10:25

Better than mine has ever been. Well done! Peter

 

User
Posted 17 Apr 2024 at 12:26

Hi Vern,

I went to 6 monthly tests after my first year post op. 

Good luck. 

Kev.

User
Posted 01 May 2024 at 19:36

Hi All,

My 15 month post surgery PSA came back today at < 0.006.

Vern.

User
Posted 01 May 2024 at 20:30

Originally Posted by: Online Community Member

Hi All,

My 15 month post surgery PSA came back today at < 0.006.

Brilliant news mate! Long may it continue!

Me and you must be similar. I had my 15 month results yesterday, still undetectable. We must  both be one of the lucky ones.

User
Posted 02 May 2024 at 08:14

Great news Vern, are you on 6 monthly tests now?

Kev. 

User
Posted 02 May 2024 at 09:00

Morning Kev,

My consultant said move to 6 monthly but I've decided to continue at 3 monthly for first 2 years .

Vern.

User
Posted 30 Jul 2024 at 19:37

PSA result today ,< 0.006 . Next one in 6 months .

Vern.

 
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