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My 3 men contd

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User
Posted 28 Aug 2014 at 01:38
Well I logged in to update my thread .... bit of a shock to see TG's comment above and I would give anything to have him reply tonight. Anyway, we saw onco yesterday - John's PSA has risen slightly to 0.04. J is a little perturbed by this but Mr B says that as long as it stays in the region of 0.02 - 0.05 it is the same result but with a bit of machine noise. As this is almost the same thing that Mr P (uro) said last time, it seems strange that not all medics here on the forum take the same view doesn't it? Perhaps just a positioning statement for our hospital?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Aug 2014 at 01:50
Apart from the PSA result, it was a bit of a frustrating appointment. Mr B talks to us as if we are children and he said some most bizarre things yesterday including a) RT doesn't usually cause any side effects b) two years post-RT is long enough for any side effects to have kicked in c) he asked whether J was back at work yet (back at work??? He never had a day off!) d) cycling & supplements make no difference e) diet only makes a difference to young men so John should eat whatever he fancies (ggggrrrrr ... I am rapidly losing ground in that battle then) f) all radical RT is 30 sessions and all salvage RT is 20 sessions. He isn't old so not likely to be losing his marbles but I don't feel as confident in him as with Mr P - a feeling that he puts a gloss on things maybe. Is it just me?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Aug 2014 at 07:48
Sometimes think these medics are a strange breed. I have had one test post RT and told to go away for a year and just have a PSA test in between. Having said that it's been quite nice to have six months off. I am giving my blood tomorrow, so fingers crossed it isn't playing any tricks on me . Didn't Jamie say a similar thing about diet. I guess he may have been referring to men without a Prostate and cycling.Hopefully J's PSA will drop again as it did before. Sorry there are no breaks in my post but for some reason it won't allow me to shift down. Bri
User
Posted 28 Aug 2014 at 09:21
No expert on RT Lyn, but I would have thought you should be careful what you eat whatever your age or health.
Stay Calm And Carry On.
User
Posted 28 Aug 2014 at 10:26
Exactly, 6f2! To be fair to the onco, he did say that loads of dairy wasn't a good idea for anyone. Bri, shift wasn't working for me either which is why my posts were all scrunched up. Good luck tomorrow x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Aug 2014 at 13:50
Hi Lyn, In a former existence I worked in a laboratory measuring drugs in biological fluids and could throw some light on your PSA values. All such measurements are subject to some degree of inaccuracy. Although you are given a single value from the analysis this represents the mid-point of a range of values. Typically the range may be plus or minus 20% of the quoted value. So the true value of a measurement of 0.04 will lie somewhere in the range of 0.03 to 0.05 (if you round the values). As well of the accuracy of the measurement there is also the precision of the measurement to be considered. Precision is defined as the spread of values obtained when the same sample is repeatedly analysed for the same chemical. Again precision is often expressed as a percentage of the average value thus obtained, typically being around 10-15%. So if J's blood sample was analysed again it is highly likely that the value obtained would not be 0.04 but some value close to it. In a
User
Posted 28 Aug 2014 at 14:04
THAT post should be kept and repeated elsewhere on tis site as it is really helpful. Hmm. Excuse the heavy body of text without paragraphs as my return key is apparently disable on this site again. Was working fine earlier this morning. Keeps me awake and on my toes! LOL Aha got around it by putting in lots and lots of spaces. Dave
User
Posted 28 Aug 2014 at 14:10

Lots and lots of spaces which when I click on "Post" are promptly removed, hence the heavy body of text.  Sorry.  Dave

User
Posted 28 Aug 2014 at 18:47
Hi Tom, yes, I have posted along similar lines many times in the past to reassure other members. In actual fact, the tolerance range that you refer to is possibly slightly wider for PSA than in routine lab work; in my post regarding our last appointment with Mr P he stated that the range was 5/100ths so a single sample could produce a reading of anything from 0.01 - 0.05. This makes monitoring of men via ultra-sensitive PSA test more tricky than the simple 1 decimal point system because one result out of odds with previous ones can cause undue panic. However, the law of probability would suggest that while tolerance might lead to successive results which hover around 0.02, 0.04, 0.03 should not cause concern, a trend of 0.02, 0.03, 0.05 is too regimented to be ignored. Fortunately for us (and Ray who is a perfect example of fluctuating PSA) the ups usually seem to be followed by drops so I am not concerned.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Aug 2014 at 19:06

Second try at posting this post:  Loving this new site.

 

Lyn that post should also be a sticky so others can read and be reassured.

 

This new site is excellent at deterring frivolous posts, blahdy dahdy dah, hard work getting a post to appear these days, what fun!

 

Dave

 

with a working return button at this time.

User
Posted 29 Aug 2014 at 10:27

There is also a big difference between the results obtained from super sensitive screening machines and the less sensitive ones.

 

Steve

 

User
Posted 29 Aug 2014 at 13:58
Lyn I think you are right Oncos and other consultants vary enormously, Mick's lovely Dr B was always straight talking and loved that I got involved and wanted to understand the medical side of Mick's illness. We both had total confidence in him. He has called me at home twice since Mick died to make sure I am OK. I was visiting another friend on the Oncology ward today (Leukemia not PCa) and Dr B was at the Nurses station he stopped what he was doing and came straight over to me, gave me a hug and chatted for about 10 minutes he is delighted that I am doing the genetics of Cancer course and participating in the palliative care for advanced PCa one, he has told me to ring him if I get stuck at all.

Good to hear that J's doing great too.

xxxx

Mandy Mo

User
Posted 29 Aug 2014 at 17:13
Quote " Dr B was at the Nurses station he stopped what he was doing and came straight over to me, gave me a hug and chatted for about 10 minutes he is delighted that I am doing the genetics of Cancer course and participating in the palliative care for advanced PCa one, he has told me to ring him if I get stuck at all." What a lovely man he must be. Just what one would hope for in a doctor.
We can't control the winds - but we can adjust our sails
User
Posted 29 Aug 2014 at 18:12

Hi Lyn, do you think that increasing PSA levels from as low as 0.02 to 0.05 are a cause for concern?

User
Posted 12 Dec 2014 at 02:44

Starting to get used to a routine pattern now - John's latest result is 0.03 so he is definitely doing a Ray thing and hovering round and about a figure. Mr P said much as before - 0.02, 0.03 and 0.04 are all the same result as far as he is concerned and this must be presumed to be John's natural level now. He also pointed out that John has hit the magical 5 year mark since diagnosis which we should celebrate - I think he is rather proud of himself as well!!!

Dad on the other hand has had another small rise - but will continue with 3 monthly checks only - he doesn't want anything to spoil next year's multiple holiday plans :-)

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

User
Posted 12 Dec 2014 at 03:13

Great news for John it feels very stable. Hope your Dad,s does not go far and stays in a safe range.

User
Posted 12 Dec 2014 at 09:23

Good news Lyn, especially if Mr P seems happy! My path-lab only go down to 1 decimal place. So Dad has plans for multi holidays next year, well done him for looking forward.

Now you can all enjoy the festive season.

Best wishes, Chris.

User
Posted 12 Dec 2014 at 15:33
Hi Lyn

Glad to hear your John has had a good PSA result. Sorry to hear about your dad's small rise but hope things work out ok.

I wish you all the best for Christmas and the new year.

Whilst writing I just want to say thank you for what you do for this forum. You are always so helpful to new and old members alike and I am not sure what we would do without you.

Kind regards.

User
Posted 12 Dec 2014 at 19:20

Great result for John Lyn...hopefully your dads will steady down and he will enjoy next years jaunts

I like your Mr P's view of the 0.02-0.04 range....not that I'm bias of course

Happy Xmas

Bri x

User
Posted 12 Dec 2014 at 19:26

Great News, Lyn.

Send my Best Wishes to John.

Have a nice weekend.

Steve

 
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