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Post RP and SRT journey - Jan 2021 update

User
Posted 20 Aug 2020 at 08:46
4 months with a view to easing yourself into 6 months - seems to me that no crisis can result from that.

We have just been holidaying with a man who is a somewhat public figure; his wife confided that he had RP over 10 years ago with "one of the best urologists in the country". I asked how his PSA is now and she replied that he has never had PSA tests since the op because the surgeon was "confident that they got it all." I tried to explain but they were having none of it - apparently, if the best urologist says you don't need to have monitoring, you don't 🤷‍♀️

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

User
Posted 20 Aug 2020 at 15:21

Lyn, re the somewhat public figure not having had a PSA test since the op. Wow, if I had not tested  mine after Prostatectomy I would probably not be here today.

 

 

 

Ido4

User
Posted 21 Aug 2020 at 11:58
Yikes

That is madness. Like most here with ART/SRT, I'd be in trouble without post RP monitoring.

I have always been led to believe that many surgeons have big egos but putting someone at risk because you believe in youself so much would, I would argue, go against the Hippocratic oath.

User
Posted 21 Aug 2020 at 12:19
My cousin died a couple of years ago at the age of 52. His surgeon also stated that monitoring was unnecessary because the surgery had 'got it all' and he even put it in writing when the GP queried it. Consultants with egos are almost as dangerous as GPs with accountants.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Aug 2020 at 16:36
"I have always been led to believe that many surgeons have big egos but putting someone at risk because you believe in youself so much would, I would argue, go against the Hippocratic oath."

Maybe he took the Hypocritic oath instead...

User
Posted 25 Aug 2020 at 14:41
Interesting...

I got my next three month test letter (may request four months when I get a chance).

I noted it also had Testosterone on it.

I never specificaly asked for it but I remember honking about feeling tired a lot of the time and having wipe out days so I wonder if the Dr decided to add that when (assuming they did) the nurse briefed him on my feedback. This next will be two tears post end of SRT.

User
Posted 25 Aug 2020 at 15:38
What was it?
User
Posted 25 Aug 2020 at 16:13

Sorry, what was what?

If you mean the T, I never had it on the last test - the nurse added a request for it on the next one.

Edited by member 25 Aug 2020 at 16:18  | Reason: Not specified

User
Posted 25 Aug 2020 at 21:27

I'm only occasionally on this site at the moment, though I probably should be more with my PSA creeping up 4 years after RP.

But I do want to say how the sentence "Consultants* with egos are almost as dangerous as GPs with accountants" lightened my day. A concise summary of around half the problems with the NHS.

[*I assume this really means "surgeons" though I have enountered cardiologists who possibly qualify].

User
Posted 26 Aug 2020 at 22:00

Going back to the interval between PSA tests. I’m on 6 monthly with a rising PSA. My view is that it’s not going to suddenly shoot up to levels where they need to act. So why put yourself through the angst of an unnecessary test 🤷🏻‍♂️

Bri

Edited by member 26 Aug 2020 at 22:01  | Reason: Not specified

User
Posted 27 Aug 2020 at 11:48
I’ll probably move up to four then six if that goes well
User
Posted 23 Oct 2020 at 22:00
Moved my next test to Jan after talking to the nurse about pre-test blues. I suggested a month delay and she suggested January as a test just before Xmas, well, duh!
User
Posted 23 Oct 2020 at 23:42
Good plan Pete
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Oct 2020 at 23:51

Pete, just spent the past hour or so reading your full thread. Trying to pick up hints and tips as my husband awaits his first session of RT. He will be 14wks post RALP when he begins. PSA was 0.2 post op.

Prior to reading  your thread I spent an age trying to locate his “tattoos” 🧐🧐

Wishing you well.

User
Posted 24 Oct 2020 at 10:51

That seems sensible. 

Ido4

User
Posted 24 Oct 2020 at 16:11

Originally Posted by: Online Community Member

Pete, just spent the past hour or so reading your full thread. Trying to pick up hints and tips as my husband awaits his first session of RT. He will be 14wks post RALP when he begins. PSA was 0.2 post op.

Prior to reading  your thread I spent an age trying to locate his “tattoos” 🧐🧐

Wishing you well.

 

Hi Lexi

Hope it helped. I can be a bit of a drama queen so don't let that worry you :)

My main takeaway from doing all this is as follows:

Make time around the hospital trips to get ready and rest afterwards - it can get tiring

Stick to the restricted diet to allow the bowel to empty easily

Get Sudocrem as the laxatives can make the bum sore

Keep an eye on the emotions - the HT plus the stress of the routine can cause wobbles

Be on the look out for an emotional "drop" once the treatment ends - going from 100 to 0 overnight is unsettling

Stay positive

Expect and work around fatigue but keep exercising

Cheers

P

User
Posted 12 Jan 2021 at 12:37

Feb 2019: 0.07

Jul 2019: 0.05

Nov 2019: 0.09

Feb 2020: 0.09

May 2020: 0.05

August 2020: 0.06

Jan 2021: 0.07

Next check 4 months, new machine coming in with undetectable < 0.025 instead of < 0.04.

Slightly unsettled.

Edited by member 12 Jan 2021 at 12:38  | Reason: Not specified

User
Posted 12 Jan 2021 at 15:05

Good news overall PP. The result is within the range of figures you have had, all less than 0.1 which is great.

Why has the new machine an undetectable of <0.025?

All the best,

Ido4

User
Posted 12 Jan 2021 at 15:18

They are moving to a more accurate machine. No idea why if numbers less than 0.1 are more unreliable.

User
Posted 12 Jan 2021 at 15:22
Presumably, the equipment can undertake more than one kind of test - perhaps the increased sensitivity is important to other departments as well as urology?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jan 2021 at 15:23
I know it’s less than 0.1 but I hate rises and trends
User
Posted 12 Jan 2021 at 15:33

Makes sense. Having one machine for each blood test is expensive.

 What are your thoughts on my latest numbers?

User
Posted 12 Jan 2021 at 16:42

Pete 

My 11 week post SRT test was 0.08, it went down to 0.05 and within two years was 0.22, so yours looks pretty good to me. 

Wonder if the new machine is a requirement of the new trial.

Thanks Chris

 

 

 

User
Posted 12 Jan 2021 at 17:34
Cheers Chris

That is a reassurance to captain worry.

At what point or PSA level did they start saying “we’ve got a problem here” for you?

User
Posted 12 Jan 2021 at 17:48

Pete 

Post surgery 0.1 was the trigger for "we need to keep a close eye on you". 0.2 post surgery was the trigger for "we need to take action."

Post SRT 0.2 was the trigger for "you have a biochemical recurrence".My onco nurse has said tracer type scan at possibly 1. Oncologist has said 2,4 or even 8.

Once it gets to one I will be asking for a definitive plan.

Thanks Chris

 

 

 

User
Posted 12 Jan 2021 at 17:58

My wonderful nurse was relaxed and said “yeah, five or six months for review but I know you get stressed so what about four” which I agreed to. I guess the only one fretting about my numbers is me 🙄😂

I just worked out this new result is actually a gnats arse over the average of all seven post srt results so that is better. I just didn’t like three in a row.

Thanks again for your input. I hope your numbers stay low.

User
Posted 12 Jan 2021 at 18:21
Chris

No idea about new machines for trials. What is afoot?

User
Posted 12 Jan 2021 at 18:32

Originally Posted by: Online Community Member

Feb 2019: 0.07

...

Feb 2020: 0.09

...

Jan 2021: 0.07

Well I'm a glass half full type of person, and I would look at these numbers and say, yo!! my PSA is 20% lower than it was this time last year and no higher than it was two years ago. 

Dave

User
Posted 12 Jan 2021 at 18:50

Pete 

There is a vaccine trial just starting with the aim of preventing the cancer going metastatic.

Thanks Chris

 

 

User
Posted 12 Jan 2021 at 19:24
Please don’t take this the wrong way but it seems unsettling that you are stressing so badly over numbers this minuscule. These numbers are saying you are cured if there is ever a cure. Certainly not worth wasting mental effort on Pete. You have years and years ahead. But that’s the nature of the disease isn’t it. Even with numbers like this it is eating away at you. Dr Chris J has very high hopes for you so try to go with it

Best Regards

If life gives you lemons , then make lemonade

User
Posted 12 Jan 2021 at 20:12
Dave - thanks. That’s just the mind set swap I needed.

Chris 1 😂 - PROSTVAC. Looks promising but has taken a long time to get to state III. That process needs to be faster!

Chris 2 😂 - bang on. Back end of last year was very tough for health and other reasons and my confidence has taken a real knock. I’m climbing out now but it takes effort.

Thanks to you all 👍

User
Posted 12 Jan 2021 at 22:18

Peter 

This trial is Rhovac-002. It is a three year trial, with multiple visits to the hospital.

Thanks Chris

User
Posted 13 Jan 2021 at 01:44

Originally Posted by: Online Community Member

Makes sense. Having one machine for each blood test is expensive.

 What are your thoughts on my latest numbers?

 

I think that they are lower than they were a year ago and you have passed the dreaded 2 year mark at which so many men on here have had to start salvage treatment. Perhaps like John, you just have quite a high 'healthy' PSA - and if there is a problem it is very, very small and very, very slow. Don't spoil today stressing about something that might or might not happen in the future. 

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

User
Posted 14 Jan 2021 at 15:22
Lynn

Thanks. I got in my own head a bit as my confidence is low after being rather ill just before Xmas.

Chris C

Another similar trial then. Not in the CRUK trial list, which PROSTVAC is.They look similar.

Chris J

Thanks. I appreciate the supportive words.

All

Apologies for whingeing. Plenty here far worse off that are far braver. I'll look to their example.

User
Posted 14 Jan 2021 at 18:57
It isn't whingeing PP and you don't need to apologise - this is what forums do best!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Jan 2021 at 19:29

No need to apologise PP, we’re all here for each other. Take care.

Ido4

User
Posted 15 Jan 2021 at 19:42
One big question now is time between tests now.

My nurse suggested four months because I am a wuss but given that I am over 2 1/4 years post SRT, I want to face my fears and increase the test gap to the maximum safe gap. Is six months viable with my numbers?

User
Posted 15 Jan 2021 at 19:46
I dunno; John is still on 3 months and we are 11 years down the line. I don't think he cares much whether it is 3 or 6 months; it is me who needs the constant reassurance!

I think NICE recently changed their guidance to 3 monthly for the first year, 6 monthly for the next 4 years and then annual from 5 years onwards?

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

User
Posted 15 Jan 2021 at 20:25
Better get the coin and crystall ball then :)

I'll leave it at 4 months this time then see what happens...

 
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