http://community.prostatecanceruk.org/posts/t9046p2-My-3-men?=#post96102
Update - May 2014 Dad's PSA has come back at 0.21 so a little lower than the last one which gives him confidence that he was right not to go rushing down the HT route. One year down, just another 19 years to go!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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This month marks 10 years since John's RP and in July it will be 8 years since his salvage RT started. When he was diagnosed, I just wanted him to make it to 60 and he has done that; there is hope after biochemical recurrence.
Wishing everyone here a happy and hope-filled 2020 x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Two PSA results in one day:-
Dad - now up to 0.7 - we have discussed and he is not going to do anything except test again in 12 months time
John - <0.1 again ... to be honest, we can't believe our luck! Just goes to show that even if it does rise over the dreaded 0.1 it doesn't necessarily mean biochemical recurrence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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
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http://community.prostatecanceruk.org/posts/t9046p2-My-3-men?=#post96102
Update - May 2014 Dad's PSA has come back at 0.21 so a little lower than the last one which gives him confidence that he was right not to go rushing down the HT route. One year down, just another 19 years to go!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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While John was cycling 100k for brain tumour research last Saturday, Dad's snooker club were apparently having a fundraiser for PCUK and raised £2400. I asked Dad whether it had been sponsored snookering but he said not, just a raffle!
I love my men x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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A little later than it should have been - I think John was a bit more worried this time than usual so kept prevaricating on booking the appointment - but PSA test done and results received. Worries were unfounded, score is 0.06 so it is true what we keep saying about tiny rises in ultrasensitive testing.
Last few results then: 0.07, 0.08, 0.09, 0.07, 0.06
The GP had also ordered a thyroid test this time (no explanation for that) which was also fine.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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John's PSA is due tomorrow. Dad's is rising gently. Yesterday it was 4 years since Stan's funeral. It was also 10 years since my mother-in-law died and should have been my brother's birthday last week. I have spent the last 36 hours in ICU with my dad's partner and made the decision at 4pm that the doctors should turn off the life support machines - she died at 4.55pm. I haven't slept for days. John & I have 7 parent-like people in our lives, 6 of whom have had cancer, three of whom I have nursed at home until the end but this is the first time I have had to make a decision rather than nature (and morphine) determining the course.
Tonight, I really really wish I wasn't tee total as the idea of getting lashed is strangely appealing.
Today is my birthday.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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
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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.
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Lyn,
Am I like your dad? Well of course not, except perhaps for one similarity which is attitude to PCa the more you survive. A topic rarely touched on here and maybe not elsewhere? Its not that you’ve given up on thankfully a long fight nor do you feel invincible but the more I survive the more I’m aware of others my age and younger in all health areas that do not. From that the quality of life, which always scored high on my list of wants, becomes increasingly important.
If it’s any comfort and not wishing to upset anyone: would I let my kids/relatives influence my health decision, No, perhaps it’s an age thing :)
Good luck to all
Ray
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That time of year again - the 3 months seem to come around so quickly! John & I saw the onco last night, scores are in and PSA has stayed stable at 0.04 so it certainly seems that 0.02 - 0.04 is his 'normal'. Next appointment in August which will be 3 years on from RT and then we will move to telephone consultations every 3 months rather than face-to-face. In the meantime, next appointment with the uro will be June, 5 1/2 years post op.
We had a good chat about stress and anxiety - Mr B said he felt much better afterwards :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lyn
Great news on the results. As for your desire to change your profession, believe me becoming a till operator or anything that requires face to face contact with the public is like jumping out the frying pan into the fire. Maybe the best job would be to become a Nun, but reading your posts in the past I don't think you would be able follow the rules required lol.
Roy
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The last few days have been very emotional - after a 3 day labour, our first grandchild arrived this morning by emergency section. We weren't able to get very much information yesterday or this morning but have now seen some photos and both mummy and baby look beautiful. Imagine how we felt this afternoon to hear that his name is Theodore Stanley - my lovely Stan would have been so very proud of his great grandson.
We are travelling down to Essex tomorrow to meet Theo and give my brave girl a big hug - if the hospital let us.
God Bless, everyone x
PS Edited to say that as much as we miss Stan and feel sad that he won't meet his namesake, I am thrilled for my dad who is going to be completely over the moon .... when I eventually get hold of him somewhere in Tenerife for a month :-)
Edited by member 08 Nov 2015 at 02:00
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lynn, Happy new year to you and John, and all the men and their loved ones on this forum, Best wishes Diesel x.
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Elaine showed me ! A whole page with many many members not on the forum. And she put me on an American prostate cancer Facebook group also. To be honest I don't like it because everyone just seems to want to help themselves and not reply. The feed is so quick you lose your posts etc. I know this forum isn't private , but it's far more enclosed than the public PCUK Facebook site. The American site is full of people sending prayers ( which is fine but not my cup of tea ). In fact I've realised this little forum is just fine on its own
If life gives you lemons , then make lemonade |
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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
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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
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Not worried about the missing sign - it has previously gone up to 0.11 then back down to <0.1 and scans are clear so the clinical view is that he simply produces a lot of non-prostate related PSA.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Went with dad to see Mr P last night; his PSA is now 1.2 and the doubling time has increased from 4 years to 2 years to 21 months. According to Mr P, it will be about 10 years before the remaining cancer cells (which he is confident are in the prostate bed and have probably been there for the entire 19 years since RP) start to cause a problem. On that basis, we have agreed that there is no need to start HT until/unless the doubling time reaches 6 months - I asked about PSA thresholds of 5 / 10 / 20 but he felt very strongly that these are arbitrary numbers and it is the doubling time that should determine when to intervene. He also suggested that if/when Dad does go onto HT, he should go with intermittent approach which will knock it back in phases while allowing dad to stay as active as he currently is.
We talked about scans to confirm that the stray cells are actually in the prostate bed. He said that MRI is notoriously unreliable below PSA of 10 and although Dad could have a PET scan (choline or FACBC) he would have to pay privately - we agreed it was rather pointless since he won't have treatment yet even if the cluster is identified.
We discussed the fact that it is now 19 years since the op, and that dad was one of his first nerve-sparing patients; Mr P mentioned that his first nerve-sparing patients were 24 years ago and some are still here to tell the tale. Isn't that fab!
Finally, we had a chat about the PSA test and John's recent rise to over 0.1 and then back down again. He told us not to take it too seriously unless it becomes consistent - that at the cancer centre they have done some research on PSA which included testing women. The average PSA result for the women tested was 0.06 (and before Bollinge asks, it seems that these women are unlikely to have just had an orgasm). It seems this had played a part in the ending of the ultra-sensitive test.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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John did the Prudential Ride London on Sunday for PCUK. Along the way, other riders raising money for the same charity chatted to him, shared their stories, etc. One guy, riding alongside him somewhere in Surrey, asked whether J had "had any problems down there yourself?" John explained that he had indeed. The other rider then embarked on a very open conversation about ED, incontinence, pumps and his wife's relief that "all that business is over with." Only wearing a 'man of men' shirt would you ever have conversations like that with a stranger on a bike 😂
I was at the finish line on the Mall to cheer him and other friends on, and was struck by how many PCUK riders there were; someone said there were over 600! In comparison, our brain tumour charity had 15 riders. An email from PCUK yesterday stated that the riders on Sunday have already raised in excess of £210,000 with more still to be paid in - isn't that amazing!
In other news, Dad's PSA has dropped to 0.95 which is completely in line with his progression rate over the last 3 years so it seems the January 19 result was a glitch. Happy days :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I'd give my right arm for 19 more years Lyn. Took my blood today. So worried that it's still going to rise despite Zoladex.
Bazza
Ten. YES BLOODY 10 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!! |
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Thanks guys.
Bazza, as a smoker I am coming to terms with the idea that my dad might yet outlive me. You probably will too!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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
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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.
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Not life's most difficult decision, Lyn! Pleased it was all sorted.
Paul
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Hope John is ok Lyn. Hoping whatever the family crisis are that they are sorted
Bri x
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Julie, I don't know where I am going wrong. I am the least empathetic person in the world and yet I must have one of those faces that makes people want to spill their hearts :-( Mr B was very stressed last night so we gave him some good advice. I met a man on a train who told me all about his problems with his aging mum and his job. Two women left my training course today in tears (in the first 5 minutes .. I hadn't even got to the ground rules) and a third took up my whole lunch break with a worry about her children.
I might resign and become a till operator at Asda. People don't tell them stuff, do they?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lyn, good news. In terms of people telling you their stories you do have that understanding face and you give good straight forward comments to people which makes us feel confident. I certainly was reassured when you have responded to my concerns. All the best. Georgina
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OH My I couldn't stop laughing , I know have this image in my head of Lyn as an Asda checkout lady dressed in a Nun's habit and very sternly telling people that they can't buy the BURGERS. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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August result came in today at 0.08 so John's 'normal' of 0.02 - 0.04 apparently extends upwards sometimes ... instinct is that it has been inflated by 3 weeks of cycling in France 🚲
Edited by member 18 Aug 2015 at 23:25
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Lyn
Good result
Even though 1 of my later results demolished my theory of too much physical activity of any kind a week before test increases PSA so I still stick with an easy week as I did on my last test. I know John is minus a prostate but we know other glands produce PSA so I would see it as normal for those glands to increase PSA with all that cycling. But whatever the cause keep enjoying what you do.
Ray
Edited by member 19 Aug 2015 at 10:33
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I feel as if I know you Lynne, you and others have and still are so much help to me ( and others )
I know I dont post as I feel I should, but don't feel my knowledge ( or lack of it ) will help just yet.
I'm so pleased for you, really good news.
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Thanks all - John was a little panicky about it but when I checked back, he had a small rise in August 13 and August 14, both of which dropped again by the November test so I am pretty sure it is something to do with nos vacances. And of course, he doesn't just tootle around on the bike, we're talking lycra and everything :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Manwith / Julie
pah! Neither receptionist or PSA would dare get on my wrong side - one withering look would shrivel any living thing
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks everyone x
Julie, I have actually upset someone recently by saying Christmas cards were a product of Victorian commercialism but I am not sure whether that is down to being a Saggi - more likely because I am at the extreme end of ENTP (anyone who knows their Myers Briggs will be smirking already)
I shall have to reign in my T tomorrow night and try to be a bit more F than is natural to me
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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A letter arrived from the onco on Christmas Eve - we are called to see him on Jan 12th which is earlier than expected so either a) he has a place on the new scanning trial or b) they have at last found the details of Stan's cancer and there is something notable about it.
I had mentioned (again) at the November appointment that Stan had died with extensive mets and a PSA of 1.2 but that we still didn't have a response from his onco about whether it was definitely adenocarcinoma - maybe the oncos and uros are finally communicating with each other?
If it is the trial, let's hope the findings are brilliant and the tracing agent is quickly made available in all regions - happy 2016 to you all x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Love and loveliness coming your way for 2016 .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Georgina there is a facebook page which I found a while ago for a friend Prostate Cancer Foundation of Australia.
You've probably already seen it but just in case you haven't. I did just check it out and it is a facebook page
We can't control the winds - but we can adjust our sails |
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Hi Georgina,
Though not a Facebook page there is an excellent site founded by an Australian, the late Terry Herbert. It is called YANA (You Are Not Alone Now). I strongly recommend it and although it has become international, think it likely that it could be instrumental and putting you in touch with a local support group. http://www.yananow.org
Edited by member 23 Jan 2016 at 16:01
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Barry |
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Oh Lyn
Really pleased to see this post, good old red wine, rugby and Roman holidays, yay.
Lots of love
Devonmaid xxxx
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Lyn
you are now page not found as well as DM
most frustrating when the problem has been reported so many times already.
I think you and DM need to post away to each other unti your respective pages flip over.
xxx
Mo
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Even a strong person needs support, needs time to themselves, need sleep, need family and friends. I am sure you will be able to access all these to ensure that you get the support you need. Make sure you are ok, caring takes its toll and everyone needs your kind and thoughtful contributions. But take time out until you are sure you are on top of things.
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If life gives you lemons , then make lemonade |
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Dear Lyn,
You amaze me. You have so many of your relations who you are supporting and yet you still have time to offer advice, guidance, support and detailed medical knowledge to the rest of us on this forum. Your current post count is 5,325!!!
You are an incredible, wonderful, person and I admire you so much.
Thank you.
David
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Lyn
Just got this.
You are so supportive of me and countless others.
Much love to you.
Bazza (Barry) XXX
Ten. YES BLOODY 10 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!! |
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Well I can't offer Sanity that would just be CRAZY, and I certainly have no advise on men without a prostate and a PSA reading of 0.02 (is that even a real number)😉
What I do have is a brand new line in comfort blankets ( don't let everyone know though ) there might be a huge influx of orders.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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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
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Lyn now that's me spluttering my tea never in 4 years have I heard you say the F word😆. So brilliant news on the PSA but go and wash your mouth out girl. 😂😂😂😂
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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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
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If it’s possible in this world of PCa it looks like a double win lyn. John seems ultra stable and dad is dad with his mind made up so far. Can’t say I blame him given the scores xx
If life gives you lemons , then make lemonade |
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Hi Lyn, just popped in to say hello, and pleased to see your good news. I don't get on here much these days, but glad to see some old faces still jogging along. It's been over 4 years since my da Vinci op, and all is well with me and my PSA. Good luck to all. Diesel X.
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Sounds good to me. Raiden the same between 0.09 and 0.11. I’m pleased for you guys x
If life gives you lemons , then make lemonade |
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If life gives you lemons , then make lemonade |
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I have said before that I now know more about PCa than my GP, and that he wrote that I had a TURP on my first sick note instead of RP, with the result that I was called in for a fitness for work assessment by a physio down the dole office.
She aborted the interview after five minutes once she realised I had cancer and had had major abdominal surgery to remove it.
Ah, priapism, if only! I was offered MUSE and Caverject, but basically can’t be bothered. Must get round to ordering that pump - size XXS😉, but Her Loveliness has moved the leaflet with the NHS PIP order code, and we can’t find it, so it will have to wait until after Christmas.
Cheers, John.
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Originally Posted by: Online Community MemberGood to read the psa result..
I once rang the surgery for a psa result and a youngish voice said it was alright because it was under 4, computer says so. The psa result at the GP never shows the < either. Although it was only a one off test so didn't complain.
Without wishing to come across as condescending in any way....I'm sure there are many secretaries who type these reports who don't know what the < symbol means, and either omit it or put it down to a typing error.....
I've even had a report saying that no intervention would be considered in my case until, or if my PSA rose to 2...
After challenging that report it was amended to 0.2 ( typing error ) lol!
Luther
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Good news Lyn so pleased for you both,I have my six monthly blood test tomorrow for next oncology meeting in January.
Have a great Christmas and New year and thanks for all your support in my early days.
John.
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Likewise I remember a man telling me he got caught short in the woods walking his dog. He described how he poo’d In a dog poop bag!
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That's terrible but I believe rare. I read another case recently of a child under 10 years of age being diagnosed with Alzheimer's which is also surprising for that disease which we also associate with people that are middle age and beyond.
Barry |
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So glad to see some good news Lyn, lets hope the next 19yrs are equally as good.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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I'd give my right arm for 19 more years Lyn. Took my blood today. So worried that it's still going to rise despite Zoladex.
Bazza
Ten. YES BLOODY 10 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!! |
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Lyn, glad you have also continued your thread over on the new forum. I am slowly working my way round things and organising it so that I can get where I want to be.
Great to hear that your Dad is still doing so well.
xx
Mo and Mick
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Yes, excellent to hear a success ! Delighted for you and your Dad, Lyn !
Fiona x
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Good news Lyn Im pleased for you both, you give so much good advice on here to everyone, pleased you have been given some positive news.
All the best
Frank
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Excellent news. Good luck to your dad!
Stay Calm And Carry On. |
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Thanks guys.
Bazza, as a smoker I am coming to terms with the idea that my dad might yet outlive me. You probably will too!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Nothing like a bit of good news for a change to cheer you up. Long may it continue
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So pleased to hear this news Lyn.
I thought you were considering kicking the habit xxxx
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Yes you are Lyn ;-). Great news about your dad
Sure it will be fine Bazza
Bri
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Hi Lynn good to hear your dads doing well, stay cool. Diesel xx
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Hi Diesel - so you have found your way over here then? Couldn't bear to be away from me for too long?
How's things?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Absolutely correct young Lynn,I just knew you were missing me too. Had blood test yesterday 9months since RRP, don't know result yet seeing Uro next Tues 3rd June will let you know. Going on holiday Wed 4th driving through France to Espan'a, we have a house in southern Spain, will be away for five weeks, so would be nice to get good result. Still find this site a bit awkward, but good to see the old crowd crawling back, and some newbies.Best wishes to all. Diesel x
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John's latest result is in - 0.03.
Bring on the summer 🍦
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Cool, great news. My turn tomorrow!
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Brill news..... Good luck tomorrow Paul
Bri
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Lordy lord! It's like Eurovision, waiting for all the scores to come in 🎤
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Excellent news Lyn I bet John is over the moon and just what we need too hear pre Leicester.
Paul I hope you will follow in John's footsteps and that all goes well with you tomorrow.
Had my scan yesterday and hope next weeks meeting with Onco will help resolve the issue I have with my pain in the ar*e.
Life is for living
Barry (alias Barrington)
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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
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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
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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
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No expert on RT Lyn, but I would have thought you should be careful what you eat whatever your age or health.
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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
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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
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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
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Lots and lots of spaces which when I click on "Post" are promptly removed, hence the heavy body of text. Sorry. Dave
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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
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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.
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There is also a big difference between the results obtained from super sensitive screening machines and the less sensitive ones.
Steve
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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
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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.
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Hi Lyn, do you think that increasing PSA levels from as low as 0.02 to 0.05 are a cause for concern?
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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
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Great news for John it feels very stable. Hope your Dad,s does not go far and stays in a safe range.
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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.
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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.
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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
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Great News, Lyn.
Send my Best Wishes to John.
Have a nice weekend.
Steve
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Lyn
fabulous news so pleased for John and your Dad.
You are such a big help to everyone on this forum you know your stuff but you also know just what to say
xx
Mandy Mo
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Barry |
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All in all, good news and a nice to have before Christmas.
Dave
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Really,pleased to,hear about John's stable PSA Lyn, not quite so pleased about dad's small rise but love his spirit. I'd like to echo the thanks to you, without people,like you who know so much about this disease this forum would be a lesser place.
Much love
Allison xx
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Really good news Lyn you both must be very happy a stable PSA and reaching the 5 year mark there will be lots to celebrate in your house hold this Xmas.
Although your Dad has had a slight rise his determination to resist HT and concentrate on holiday plans says a lot about his strength of character and long may that continue.
Now where is that button for the Lyn appreciation society.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
BFN
Julie X
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So pleased to hear your news Lyn, all the makings for a great Christmas.
Si x
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I am very happy for you and your family .Also many thanks for your very helpful tips about my MRI which were great relief and comfort for me at the time. I wish you and your family a lovely Christmas
Thanks fully
Essi
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We spent Christmas in the glorious Gambia and had a wonderful time although the presence of Ebola in other parts of West Africa has devastated the tourist trade in the Gambia and people are finding it harder and harder to earn money to buy food etc. We had taken quite a lot of stuff out with us including money for the school we support so feel that we at least were able to do our bit to help. Unfortunately, we came home to crisis upon crisis in the family, culminating in an exciting trip to A&E yesterday when John had a suspected heart attack. Blue lights, Julie - I thought of you x
Many many hours later, the cardiologist was happy enough to send us back home on the basis that John's heart is fine - it seems that the chest pain & tingling was caused by either the bad news & worries of the last few days or the malaria tablets combined with a cheeky Levitra (both of which have chest pain as an uncommon side effect - who knew!!!!) So, the question is ... when we next go to Gambia, will we have to choose between sex and malaria?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Not life's most difficult decision, Lyn! Pleased it was all sorted.
Paul
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