It is so good to have your wise words back on this community Bazza.
Bri, I know when I was told of my recurrence I nearly passed out as fear gripped me. My oncologist has told me very clearly that my recurrence is aggressive and likely to cut my life short, he won't commit to numbers other than to say you could have years not months but no-one can tell.
It was certainly far worse hearing about the recurrence than my initial diagnosis. I had been through the radical prostatectomy and all that entails but the b***ard never really left.
The oncologists are dealing with this on a daily basis but I also do wish they would try to imagine what it must feel like for us. (I'm not saying they are completely without empathy but some of the specialist nurses I have met are)
One CNS told me I was panicking (I wasn't) and that there was plenty of time to deal with things (there wasn't).
My GP was even worse until I put him right, information wise.
Thank goodness for the specialist nurses here on PCUK and for our fellow travellers and their nuggets of wisdom.
Wishing you all the best,
Ian.
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This latest result for me has been awfully hard. I’ve not slept since tbh. I awake in the morning heart pounding with a dread like a fight is gonna break out somewhere. At last spread is likely found. I knew it would be. Four months hopefully of normal life then almost certain treatment start. I was told on average for G9 and my stats that I’d get 4 yrs. So I may be dead at 56 leaving a 12 yr old son. A sickening feeling in my chest that hasn’t settled yet :/((
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Your post is very sobering Chris.
Thinking of you.
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Probably be useful to keep each other updated regarding responses and possible treatments Chris
Bri
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A very sobering thought indeed. But as we know Chris we have many men on here alone who have far outlived the ‘specialist’ prognosis/predictions
Stay strong mate
Bri
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Far from sobering, I think Chris should use those lemons to make a few gin & tonics!
I know this is in the vein of my usual ’concentration camp humour’, and I hope it will be taken in good part.
Best of luck to all of us.
Cheers, John.
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I’m not sure being on this site is a good thing or a bad thing. You can obviously get the great support which I appreciate. But as well as reading some very encouraging posts of years of survival following a bleak dx, you also sadly read some posts that hit home of how deadly this disease is and of men suffering and dying in a relatively short time.
So I feel buoyed at some point having read some encouraging posts but them brought back down to earth when reading someone’s terrible news. I guess the forum is a mixed blessing 😢
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I don't think there is anything wrong with having s good understanding of your illness and what it is and is not capable of. The biggest problem with forums is they attract only a small percentage of patients so they probably represent a very screwed view of reality.
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Stay strong Bri ,
Mine came back about eighteen months ago , but not sure if it ever left,
I had early Chemo six sessions , as I have now got three Mets
But three monthly Prostap keeps things under control ,I made it to Seventy which was always my target ,
it will be Eight years tomorrow for my Prostate Cancer , yesterday was 20 years since my Heart Attack
worst time is three monthly with Onco , but my Psa remains 0.04
Best Wishs
Barry
Edited by member 10 Feb 2019 at 14:25
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Brian
Francij is correct. That plus the fact that only 3 - 13% pf men depending on what you read die of rather tham with gives us a big edge over other illnesses.
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Bri,
I know that some of the posts are awful and really show the very bleak side of cancer but please take heart in that when you search for posters with symptoms like N's, there are very few. What there are on this site are hundreds of men who do indeed "outlive" the statistics, who live long enough for the next treatment be approved and who function almost normally with similar numbers to N. N is an anomaly, he doesn't fit the boxes.
Morbid fascination is something I'm sure most posters have experienced, when things are looking bad it's sometimes hard to not look for how much worse it can get, I know I did. Then knowing how awful it is/can be, I felt more appreciation for the very little things that were good. I still get waves of resentment and anger and "it's just not b****y fair" moments and I have to talk myself down to be in the here and now with N and the kids.
I'm not always sure how my posts are taken but I mean this to be supportive in every way. Only a very tiny percentage are as awful as N's.
Sending you hugs and best wishes.
Kentish
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Bri, Can I echo Kentish's sentiments please? You'll see from my discussions on her posts that we are towards the end of this road too and that it has been a struggle. But please don't be disheartened by what we say. One of H's consultants once said 'What you don't want to hear Mr ... is that you are a very interesting case. And I'm sorry to tell you that you are an interesting case'. We are rare and having the support on the forum makes a big difference to me, as it means we can see that we aren't on our own. But remember in what we are posting that it isn't like this for most people. And in the nine years that we have been dealing with this we have seen grandchildren grow up, even enjoyed some travel in the early days, spent a lot more time in each others company, and I have certainly learnt a lot.
Wishing you all the best.
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Thank you both and please please don’t think I was talking about your threads and the information you share. That is what the forum is for and having been around here for the last six years I am fully aware of that. We are here to support each other and this forum is a god send.
I think sometimes depending on your frame of mind it’s possibly better to decide what to read. I appreciate both of you (Kentish and Teacups) for replying when you have so much to deal with at the moment. Sending you both virtual (((((((hugs)))))))
Bri xx
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Morning Bri, I too have mixed feelings when looking through this site, I vary between thankful for being armed with excellent empowering advice and information, to despondency when it makes me aware of where this sodding disease might take me. On the subject of empathy from medical staff, I have found over the years that doctors often come across as sounding quite flippant, sometimes from pressure of work, but also from a lack of sensitivity, even humanity at times. To be honest there are times when I look at my grandchildren and have to stop myself from breaking down in tears as I fear I may not see them in in their teens/ adulthood. Stay stong mate. Anyway listen..we made it through Addick Comp in the bleak early 70s did'nt we...if we can do that we can get through owt !! All the very best Bri.
Paul.
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Haha that is so true Paul what with Atherxxxx and Burkxxxxxx running us ragged
Hope you are well mate
Bri
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Do I need to go and visit this Addick comp which is probably now an academy but may still employ Burk and Ather?????
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Ha ha it is indeed now an academy. Burkxxxxxx (deputy head and ex RAF) has sadly passed away. Mr Atherxxxx (Headmaster) is now, so I have been informed, a wine connoisseur.
Early 70’s were different times. Enough said on that I guess
Bri
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Got the letter for my next appointment at the beginning of May, doesn’t seem that long away. To be fair they did suggest 6 months at first and I am now beginning to wonder if that would be better.
Is 6 months pretty common when monitoring rises at this level?
Bri
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Bri
I am on six monthly testing, although my onco nurse has arranged a second test a month from the last test to rule out any effects of the treatment I had a few days before the last rise. I will have a telephone consultation with the onco nurse in a week's time and no doubt she will outline what level the PSA has to reach at our hospital before the next step is taken. It is what it is and although it affects long term decisions, I can't do alot about it. I try to live stress free life easier said than done sometimes.
Thanks Chris
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Good luck Chris.
Im tempted to go for 6 months purely and simply to try and detach myself from the reality for longer periods
Bri
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Seeing the oncologist next Tuesday which is 4 months since my last appointment. At that appointment my PSA had risen to 0.12. (<0.01 Mar 18, 0.08 Nov 18)
So I thought I would ring the surgery for the PSA result in readiness for this appointment. Surprisingly it’s still at 0.12. I even asked her to check if that was definitely from the blood test yesterday and she confirmed it was. It’s a bloody strange disease this but I will take no further rise and probably go with a six month test if that is what they suggest on Tuesday
Cheers Bri
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Detachment is good. Reality will always live in the shadows even if things go tits up. Positive result brother
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Great news - if it holds stable at this level for a few years, that would be perfect.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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That’s good news Bri. Long may that continue.
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Bri
That sounds promising, I get me latest result on Tuesday, not chasing it this time, it will be what it is.
Thanks Chris and Dawn
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Fingers crossed it has come down, stayed the same or if it has risen that it is insignificant
Let is know Chris
Bri
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Oncologist appointment today which went as much as expected regarding the PCa. She confirmed that the PSA was 0.12 same as Feb. Agreed next appointment for 6months time.
However I did mention some slight discomfort I had been having in the pelvic area and some inconsistencies with bowel movements. I questioned the possibility of any late effect symptoms from the RT. She told me that because my RT was in 2013 there wouldn’t be any late effects now as they occur within two years of having the RT. I’m not sure about that but did not feel informed enough to challenge her. I thought late effect issues could arise many years after the completion of RT
Oh she also said the next line of intervention would be HT but not until the PSA reaches 10. That’s comes down from 20 as mooted by a previous oncologist
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It just shows Bri that wherever you are in the country Oncos have their own ways and techniques based on their own personal case studies. But all actions are still within NICE guidelines I believe. For instance my PSA is now well over 100 post surgery but I haven’t even been offered HT nor Chemo , because all scans show zero and because I constantly refuse the normal next line treatment of RT. I had a 20 minute phone consultation with my GP today who is a cracking bloke and also head of palliative care at a local cancer hospice. He went right through my case and discussed my last two scans in proper detail ( which my Onco hasn’t ) , and he absolutely agreed in my instance that it was the right decision to avoid RT given the scores.
Judging by all the info on this forum yes your next line of defence is HT , and if you’ve had RT I think psa 20 is normal. It could be ages before you reach that. I believe SRT fails in 50% of men but you’ve bought yourself some good time. Even now the tiny recurrence may be localised where the rays missed. I’m no expert but in your shoes I’d let psa rise substantially to say 5 or more then get a PET before agreeing to nasty systemic treatments
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Bri
Just had a call from onco nurse PSA 0.11, so no change. Like you I get pelvic discomfort. Next test four months.
Thanks Chris and Dawn
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Congrats
Brian’s and Chris
Long may this be a flat or reducing line!
Steve
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Just seen GP who has decided to put me on the Bowel Cancer Screening Pathway.
I did the home testing kit in March as I had hit the big 60 and thankfully that was clear.
So fingers crossed there is nothing else that is sinister lurking in the depths of my body
Bri
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Bri
Have fun, bit of advice dab don't wipe.
Thanks Chris
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Just had latest PSA results almost 6 months since the last. Now at 0.14 so not a significant rise (0.12 in Feb and end of May). So the one bit of comfort is that even though it’s gone in the wrong direction it hasn’t doubled in a year. Not sure whether to see the oncol or not now as they will suggest testing in 6 months which I’m fine with
Oh forgot to say the colonoscopy I had was all clear
Bri
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Bri, good news overall I think. PSA rise is very slow and virtually unchanged in 6 months.
Do you still see an oncologist regularly or talk by telephone consult?
All the best,
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Good news Bri ! Get through Xmas and rethink maybe.