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My 3 men contd

User
Posted 16 Dec 2016 at 07:58
Lyn

Let's hope it is a blip.

Thanks Chris

User
Posted 16 Dec 2016 at 08:58

Me too. Thinking of you both.

We can't control the winds - but we can adjust our sails
User
Posted 28 Jan 2017 at 14:26

Dad's PSA has risen to over 0.6 which gives a still reasonable doubling time of 12 months. GP has advised to go to 3 monthly tests; I told him I think the GP is spooking him unnecessarily but will see what happens next time.

John's next test is on Tuesday and onco the following week.

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

User
Posted 29 Jan 2017 at 10:17
Lyn

your Dad has been through an awful lot just lately so his GP is probably not spooking him just taking all reasonable care. If I had a man in my life with PCa who had 2 consecutive rises I would want him to return to 3 monthly testing too but of course he could always choose not to after all it would be his choice.

I hope everything goes well for David next week.

xx

Mo

User
Posted 07 Feb 2017 at 23:45

Well, well, well ... have I got news for you.

I went to John's onco appointment with all guns blazing tonight. John had a ridiculous discussion with the nurse last week about his PSA test - she claimed never to have heard of the ultrasensitive test and insisted she had never done one, even faced with the evidence of 7 years of results to 2 or 3 decimal places. When he went yesterday to get the result, he was told it was "fine" at 0.1 and no, there was definitely no sideways hat - but when he looked at the screen he could see the < sign. No, she didn't know that was a 'less than' sign. I mean, these are graduate nurses ffs.

Anyway, I was livid today but Mr B took the wind out of my sails sharpish. Our hospital, a large leading oncology centre, has concluded that the ultrasensitive test is unreliable and made a decision to do away with it completely. Completely. Mr B said he had been extremely concerned at John's last two apparent rises but they are now convinced that it is a technical variance issue of the machines. I think that is pretty much what Mr P (the uro) was telling us when he said a couple of years ago that the same sample could vary from 0.02 - 0.05 if you tested it twice but I never imagined that the hospital would just call a halt to them entirely.

Accepting the view of experts (why wouldn't I, it is a highly respected centre of excellence) John has had 5 years of <0.1 and should in Mr B's words "consider himself in remission"

It will be interesting to see if other hospitals follow suit.

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

User
Posted 07 Feb 2017 at 23:52

Excellent! I've run out of gin but will get some more in tomorrow and drink to John's good health. (this might become a problem!)

E

x

User
Posted 07 Feb 2017 at 23:55
Lyn now that's me spluttering my tea never in 4 years have I heard you say the F wordπŸ˜†. So brilliant news on the PSA but go and wash your mouth out girl. πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Feb 2017 at 00:04

That's great news Lyn that he is officially in remission.
Will other centres stop super sensitive testing...I'm not sure. Many men have been given additional treatment based on rises at such levels. I would hope they would have considered all factors e.g. calibration etc before suggesting such radical action. My oncologist was/is one of the leads on the Radicals trial and had no hesitation in recommending ART when my PSA rose to 0.087

Bri

User
Posted 08 Feb 2017 at 00:48

Yes but science moves forward Bri and what they thought was trustworthy 4 or 5 years ago may not have been after all. Maybe you and John would never have had salvage RT if you had only ever had the normal PSA test - or maybe you would have had it a few months later when your PSA became officially detectable. We will never know.

Eleanor, I think you are drunk.

Julie, in the real world I have a mouth like a sewer. It's the nature of the work.

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

User
Posted 08 Feb 2017 at 04:01

Excellent! You and others have always expressed the view that that taking the PSA test result to so many decimal places is misleading and causes people unnecessary concern. We know this because it is a matter that so many new to the forum raise but it's good to have professional confirmation for John (and others who have had a supersensitive test.)

Barry
User
Posted 08 Feb 2017 at 04:36

Very pleased for both of you Lyn. Great news

We can't control the winds - but we can adjust our sails
User
Posted 08 Feb 2017 at 07:00

Wonderful news. I'm so pleased for you both.

User
Posted 08 Feb 2017 at 07:16

Fantastic news for you both. Congratulations. I've never once heard of a sensitive test. I guess my psa has never been low enough haha. Have you ever seen on the blood form in the examinations required box " super-duper " psa test please. My guess is that all machines can measure to 2 decimal places. If my test came back at 0.91 , it can measure to 0.01 right !!!
I think what they are trying to say is that the test hasn't changed but they are agreeing to ignore variations under 0.1 because they could quite simply be blips in statistical quality control.
I do hope you swapped your tea for at least a sherry x

Edited by member 08 Feb 2017 at 07:18  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 08 Feb 2017 at 07:48
That is great news, really pleased for you both.

Thanks Chris

User
Posted 08 Feb 2017 at 07:56

Lyn, that really is great news for you and John.

Interesting story about bloods, i have had mine done at the hospital every four weeks for over four years, and except when i was on Chemo when the bloods are all over the place i can just tell they are mine all pretty similar to the month before.

After starting Abbi they started testing for cholesterol and just continued but over the last six months it has been creeping up so was advised to see my GP, now this was 3 days after having my bloods at the Hospital.

My GP did all of my bloods and these are tested at a different hospital, when they came back they was nothing like the blood results that i normally get.

Just a couple that stood out, Cholesterol every month at the hospital around 7.0 to 7.5 at the GP 5.1, ALP is always around the 40 mark at the GP 29.

I guess the only difference is at the hospital they are tested straight away and i get the results in just over an hour and at the GP surgery the nurse takes the blood then they are tucked in her knicker elastic for 8 hours then slung in the back of a van and driven 30 miles and then the next day someone gets round to testing them.

So i have disregarded all of the bloods but i am sure the GP cholesterol is correct http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-sealed.gif

Si xx    

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 Feb 2017 at 08:20

Lyn

Firstly very good news.

I'm not implying this is John's case: is it being deemed by some hospitals the sensitive test is resulting in treatment being given to those who may never need it. So as we can't predict who would benefit we stop it for all - saving money at a cost of shorter lives for some?

Ray

User
Posted 08 Feb 2017 at 12:08
Originally Posted by: Online Community Member

Have you ever seen on the blood form in the examinations required box " super-duper " psa test please. My guess is that all machines can measure to 2 decimal places. If my test came back at 0.91 , it can measure to 0.01 right !!!
I think what they are trying to say is that the test hasn't changed but they are agreeing to ignore variations under 0.1 because they could quite simply be blips in statistical quality control. x

Yes, the test request slip has ('had' now in Leeds) a separate tick box for ultrasensitive PSA and it was actually a different test. It costs more as well. At our hospital they have put samples through multiple times and got different results - conclusion is that less than 0.1 the presence of PSA is too tiny to measure accurately.

They also concluded that once it becomes detectable (higher than 0.1) there is sufficient to reliable measure whether it is 0.15 or 0.16.

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

User
Posted 08 Feb 2017 at 12:13

Hi Si, yes. I have posted on here before that GPs in Leeds can get PSA tests from St James hospital or from Harrogate. The private hospitals send their samples to the same two labs. It is common knowledge among medics in Leeds that the result is higher from Harrogate - and this was proved when my dad was tested twice on the same day and got significantly different PSA scores.

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

User
Posted 08 Feb 2017 at 12:20
Originally Posted by: Online Community Member

is it being deemed by some hospitals the sensitive test is resulting in treatment being given to those who may never need it. So as we can't predict who would benefit we stop it for all - saving money at a cost of shorter lives for some?

Ray

I am not sure whether other hospitals are taking the same stance as Leeds and stopping the US test. But NHS guidance is clear that biochemical recurrence after surgery is a PSA over 0.2 and/or 3 successive rises over 0.1 and/or doubling time under 6 months. So the unreliability of US testing under 0.1 should be irrelevant (Bri being an exception to normal practice and guidelines)

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

User
Posted 08 Feb 2017 at 23:23
Sorry guys and especially Lyn I just can't get the image of Si's nurse with his bloods tucked in her knicker elastic out of my mind . I can't imagine where she would have tucked his scan results . πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Feb 2017 at 23:30

The onco said "John, you are going to live to be an old man" .... he fails to account for the likelihood of me tucking John's results down his throat if he keeps leaving papers on the floor and crisp wrappers on the carpet.

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

User
Posted 09 Feb 2017 at 05:57
Originally Posted by: Online Community Member
Originally Posted by: Online Community Member

is it being deemed by some hospitals the sensitive test is resulting in treatment being given to those who may never need it. So as we can't predict who would benefit we stop it for all - saving money at a cost of shorter lives for some?

Ray

I am not sure whether other hospitals are taking the same stance as Leeds and stopping the US test. But NHS guidance is clear that biochemical recurrence after surgery is a PSA over 0.2 and/or 3 successive rises over 0.1 and/or doubling time under 6 months. So the unreliability of US testing under 0.1 should be irrelevant (Bri being an exception to normal practice and guidelines)

Not sure I am an exception Lyn. Perhaps my oncol is ahead of the game. I was classed as high risk. The Radicals trial is trying to determine if RP followed by RT is the approach that should be taken with high risk men. Smaller trials seem to indicate that it is.

On a personal note in my circumstances I would rather have the RT early rather than wait and give the PCa cells time to start moving or drifting off into the blood stream. With my post op histology I think it was fairly evident that I would need follow up treatment at some point

Bri

User
Posted 06 May 2017 at 22:11

Dad's latest PSA results:
Feb 2016 0.36
Jan 2017 0.65
April 2017 0.59

I did suggest tonight that a visit to the oncologist might be a good idea, we know that Mr B would offer IMRT despite dad's age, but no - he is going on a cruise in the morning and then to Canada for a month when he gets back from the cruise so he is "too busy" to arrange an appointment. That will occupy much of the 3 months until the next test!!!

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

User
Posted 06 May 2017 at 22:46
Wow all I can say is what a guy your dad is Lyn . I am taking a guess he is also a fellow Saggy and I can see where you get your zest for life from .

Way to Go Lyns Dad ! Way to Go !

Life isn't a rehearsal! It's for living and oh boy your Dad is living it !

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 May 2017 at 01:09

It is 6 months today since Celia died and to be honest Julie, I think he simply can't bear to be at home. As much as I love him, I can't fill that empty space. But yes he is an amazing man even if he is an Aries (he was 80 last month) x

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

User
Posted 07 May 2017 at 08:33

Lyn

Whatever the reason I like your dad's attitude to life. May it keep going long time.

Ray

User
Posted 07 May 2017 at 10:42

The perfect way to deal with this sh*t disease, hope he has a great time.

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 07 May 2017 at 10:50

Can't fault his decision. Enjoy the cruise and Canada

Bri

User
Posted 04 Jul 2017 at 23:10

After a small increase in PSA and a lot of back pain for which he was referred to the hospital, John had an unexpected MRI today!

Going to France tomorrow for 3 weeks - will worry about results when we get back.

Stay safe and well everyone xxx

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

User
Posted 04 Jul 2017 at 23:17
I hope that you both have a lovely holiday as you deserve it.

I also hope that the results are good when you get back.

User
Posted 04 Jul 2017 at 23:18

Have a great trip Lyn..France in July will be fab.

Hope the holiday and sun helps with all

xx

User
Posted 05 Jul 2017 at 04:37
Lyn. Slow dt. Still in decimals. Love and strength to you as you have ALWAYS been there for me.

Bazza

X

Nine years since DX.

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.

User
Posted 05 Jul 2017 at 05:45

Have a lovely time.
I'm up early too, looking for flights for next March. Couldn't sleep so putting the time to good use !

Stay safe and enjoy yourselves

We can't control the winds - but we can adjust our sails
User
Posted 05 Jul 2017 at 08:15

Lyn

Put the PCa etc concerns in a bag and leave it at home. Have France fun.

Ray

User
Posted 05 Jul 2017 at 08:44
Never good news, but hopefully you will both be able to relax and put this from your mind on your holiday, somehow we get used to doing that don't we? Have a fantastic time and make great memories.

Lots of love

Devonmaid xxxx

User
Posted 05 Jul 2017 at 08:50

Have a great time 😎

Bri x

User
Posted 05 Jul 2017 at 08:57
Have a great break Lyn & John

X

Don't deny the diagnosis; try to defy the verdict
User
Posted 05 Jul 2017 at 12:50

A well deserved break for you both. Get those batteries recharged.

xx Tom

User
Posted 05 Jul 2017 at 16:43

Have a great time in France Lyn we love it over there and hope to get back in September for our three month tour again and down to Spain as the weather cools.

Regards John.

User
Posted 05 Jul 2017 at 22:30

Have a fantastic time 😁😁

User
Posted 06 Jul 2017 at 06:28
Bon voyage
User
Posted 07 Jul 2017 at 12:46
Have A fantastic time Lyn .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Nov 2017 at 22:22

A bit of cheer for anyone who worries about small PSA changes.

The PSA in July had dropped back to 0.1 (from 0.11 in March/April) and the MRI was clear. Result today is <0.1 .... really not what we were expecting!

I say the MRI was clear; it has led to a referral for 2 new knees in January so we will have to give up the dancing for 4 months and we prepare for another battle with the car insurance provider in the Spring.

On such a sad day and with Julie, Trevor, Linda and David at the front of my thoughts, i am perhaps more relieved than happy. Lots of love to my friends here xxx

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

User
Posted 24 Nov 2017 at 07:48

I know this may be teaching you to suck eggs , but 2 months ago I was booked in for a private left knee clear-out ( not replacement). I could barely walk the dogs anymore with diagnosed torn cartlidge. And now I’m 80% recovered. The answer being 2 liters of water per day , glucosamine and Chondroitin supplement , and the new Turmeric oral spray which bypasses the digestive system. So if you haven’t tried give it a go. I hear full knee replacements are very painful recovery and in my friends case led to his mother’s demise through infection and sepsis ( sorry ).
But great news for you both on the PCa front xx

If life gives you lemons , then make lemonade

User
Posted 24 Nov 2017 at 08:17
Lyn

Great news on the PSA, just off to get mine done today.

Thanks Chris

User
Posted 24 Nov 2017 at 09:18

Good luck CC

CJ, he played front row for 33 years - definitely needs new knees! But yes, all those things have helped him delay surgery until now and he has a very different outlook to you and I .... where we see potential risk, he sees only positive outcomes. The physio daughter will be moving in post-op to make sure he does all his exercises properly 🀣

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

User
Posted 24 Nov 2017 at 09:21

Brilliant news Lyn.

You're right in that yesterday was a sad day when a Hero was laid to rest and even though our hearts to go out Julie and her family, what we also needed was a bit of a boost and you've given us that.

Congratulations

We can't control the winds - but we can adjust our sails
User
Posted 24 Nov 2017 at 10:23
Good news Lyn,

It is so good to get some positive updates

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 24 Nov 2017 at 10:58
Hi Lyn,

Good news with the PSA.

Hope the knees will get sorted but unfortunate about lull in the dancing.

You are probably far too young to remember it but there is always the hand jive as a poor substitute.

All the best

Kevan

User
Posted 25 Nov 2017 at 18:18

Very good result Lyn.
Hope he recovers speedily from the knee replacement

Bri x

 
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