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A rise on this test

User
Posted 05 Feb 2019 at 21:36

Bri

Not great news. I am in a similar situation and can't say the idea of HT is appealing, hopefully we both might not have further rises. 

Thanks Chris and Dawn

User
Posted 05 Feb 2019 at 22:45

Originally Posted by: Online Community Member

Hi Bri 

For what it's worth, after RALP and SRT my PSA was still at 0.6 so we waited until it hit 1.2 before starting HT. We had a chat after the SRT and I decided not to bother with scans before the HT. The first PSA test 4mths later was undetectable and it is still there 22 months after starting the HT.

The side effects of the Prostap3 for me are mainly hot flushes but occasionally a bit of fatigue that I can choose to give in to or simply work through.

Kind regards

Kevan 

 

Cheers Kevan there the success stories i want to hear. Keep it up mate

 Bri

User
Posted 05 Feb 2019 at 22:46

Originally Posted by: Online Community Member

Bri

Not great news. I am in a similar situation and can't say the idea of HT is appealing, hopefully we both might not have further rises. 

Thanks Chris and Dawn

Cheers Chris, heres hoping

Bri

User
Posted 06 Feb 2019 at 07:05

So it’s the day after the night before. Lying in bed this morning and the reality started to hit home. I thought how quickly the years have gone since I was first dx. I then wondered if I would have that amount of time left which has gone in the blink of an eye. I guess I won’t know. I’m not worrying as some may think but I can sense a bit of a dark cloud starting to form and descend and I’m not sure how to push it back. I do seek inspiration from others on here but will that be enough I wonder.

Bri

Edited by member 06 Feb 2019 at 07:16  | Reason: Not specified

User
Posted 06 Feb 2019 at 07:21

Brian

Sorry to hear about the clouds. I’m sure you’ve got a lot left in the tank. Just keep talking here and it will help.

Also don't let it sneak up on you. The stress did on me this week and I let the side down by getting bladdered last night.

Edited by member 06 Feb 2019 at 08:08  | Reason: Not specified

User
Posted 06 Feb 2019 at 12:25

Thanks Pete. Hope you are ok now

Bri

User
Posted 06 Feb 2019 at 12:28
Cheers Bri

I’m hung over 😵😂 and frankly I’m s*** scared of Tuesday but I just have to put one step in front of the other and stop being a baby. Plenty braver here in car worst straits.

User
Posted 06 Feb 2019 at 12:53

Fingers crossed for you Pete. Are you still on HT?

Bri 

User
Posted 06 Feb 2019 at 12:56
My second and last jab was August just in time for SRT.

This is the dreaded first post SRT test. I am being silly because even if it was metestatic it should still have taken a hit but there is always the chance that it is resistant to HT.

I just have to literally slog on until I know.

Thanks for asking,

User
Posted 08 Feb 2019 at 11:14

Just wondering what others experiences are when the doctor gives bad news. The registrar told me the cancer had recurred but there did not seem to be any sign that she was aware of or to be honest bothered about the impact that news could have on my wife or me. It was like she was telling me i had a UTI or something.

She must have recognised that the news had not been accepted by us with glee  as her response was ”C’mon youve been here before”. I told her we haven’t actually, but what if we had does that make it easier?? I do know that news of a recurrance can sometimes be harder for some people to take than the original dx so maybe the Doctor shoukd recognise that

Wouldnt it be wonderful if the medics would show some level of empathy and maybe even go as far as offering some advise to us.

It just shows that we are basically just a big part of the statistics jigsaw and treated as such

Bri

User
Posted 08 Feb 2019 at 11:23

That’s just it Pete and Bri. you just get on with it because you have no choice. what will be will be and you learn to accept new normals whether they are positive or negative. I truly believe that dealing with these stepping stones is the making of one as a  man. It certainly taught me a lot. That doesnt mean its any easier this far down the line which I obviously am as you can read my previous posts to see just how scared one can get - but in the end, your mind reconciles with the facts and you just deal with it. I wrote a piece once called A place called Acceptance though cannot for the life of me find it, or was it The road of certain uncertainty. anyway, you get my drift. i wish you negative test results and positive outcomes brothers.

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!! 

User
Posted 08 Feb 2019 at 11:36

Brian - clouds.

The dark ones are many and random, some anticipated and others when you least expect them like when you see a fit couple of your own age group enjoying life or doing something as mundane as the supermarket shop. You get the clouds descend every time a cancer advert comes on telly and when you see a collector for MacMillan out on the streets. Constant reminders of a life once free of illness and your current status cause more clouds to descend and it all becomes too much.

So how do you deal with it? You deal with it like this......

You pause. You take stock of your life. You remain thankful for all those good years you’ve had and you switch your thoughts to terminally ill children in hospital whose only ambition is to make it to a sixth or eighth birthday. To the young men and women in their 20s or 30s cut down by serious illness which means they will never reach the joys of the years you have nor see children grow or the years pass. You count your blessings and remain thankful. You do not concentrate on the old men in rude health in their 70s and 80s and do not bear grudge nor become jealous because that is deeply negative and only brings more clouds.

Above all, you realise and keep telling yourself that you are nobody special, no matter how much you might love yourself - and that every one of us will follow the same exit but at different stages. We will all pass. What we must do at whatever age we are is wring every last drop of joy from our lives no matter how dark and pessimistic the future seems - no matter how bad those consultsnt appointments go. Sometimes, the fear will overwhelm you - it often does me - then you take your mind as per previous and thank your lucky stars that you’ve made it this far in a world where a lack of opportunities for millions means an early death or starvation, or oppression, or war.

Cancer or not. We are the fortunate few. We know our fate. We don’t want it but we have the power to plan our futures however uncertain. Millions don’t and never fulfil their potential because they take life for granted. We never will. The reason is because WE ARE GIANTS.

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!! 

User
Posted 08 Feb 2019 at 12:02

Bazza thank you for your wise and encouraging words. I remember reading the post you are referring to

Hope the chemo is going as well as it can be for you

This weekend I will park it all as we spend a weekend in Twickenham drinking ale and supporting the boys in Le Crunch 🏉🏉

User
Posted 08 Feb 2019 at 12:53

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.

 

Ido4

User
Posted 08 Feb 2019 at 13:23
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 :/((

If life gives you lemons , then make lemonade

User
Posted 08 Feb 2019 at 15:28

Your post is very sobering Chris.

Thinking of you. 

 

Ido4

User
Posted 08 Feb 2019 at 16:10

Originally Posted by: Online Community Member

Bri

Not great news. I am in a similar situation and can't say the idea of HT is appealing, hopefully we both might not have further rises. 

Thanks Chris and Dawn

Probably be useful to keep each other updated regarding responses and possible treatments Chris

Bri 

User
Posted 08 Feb 2019 at 16:13
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

User
Posted 08 Feb 2019 at 17:05

Originally Posted by: Online Community Member

Your post is very sobering Chris.

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.

User
Posted 10 Feb 2019 at 10:37
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 😢

User
Posted 10 Feb 2019 at 12:14
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.
User
Posted 10 Feb 2019 at 14:24

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  | Reason: Not specified

User
Posted 10 Feb 2019 at 16:57
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.

User
Posted 10 Feb 2019 at 17:44
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

User
Posted 11 Feb 2019 at 06:56

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.

User
Posted 11 Feb 2019 at 09:01
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

User
Posted 12 Feb 2019 at 09:09

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.

 

 

 

User
Posted 12 Feb 2019 at 16:32

Haha that is so true Paul what with Atherxxxx and Burkxxxxxx running us ragged

Hope you are well mate

Bri 

User
Posted 12 Feb 2019 at 16:51
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

User
Posted 12 Feb 2019 at 21:32
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

User
Posted 12 Feb 2019 at 22:49
Indeed
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Feb 2019 at 21:09
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

User
Posted 16 Feb 2019 at 07:01

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

User
Posted 16 Feb 2019 at 09:56

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

User
Posted 31 May 2019 at 16:25
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

User
Posted 31 May 2019 at 16:31

Detachment is good. Reality will always live in the shadows even if things go tits up. Positive result brother 

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!! 

User
Posted 31 May 2019 at 18:11
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

User
Posted 31 May 2019 at 20:44

Originally Posted by: Online Community Member
Great news - if it holds stable at this level for a few years, that would be perfect.

It certainly would Lyn

 

User
Posted 31 May 2019 at 21:23

That’s good news Bri. Long may that continue.

Ido4

User
Posted 31 May 2019 at 21:33

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

User
Posted 01 Jun 2019 at 08:53

Originally Posted by: Online Community Member

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

Fingers crossed it has come down, stayed the same or if it has risen that it is insignificant 

Let is know Chris

Bri 

 

User
Posted 04 Jun 2019 at 17:30
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

User
Posted 04 Jun 2019 at 19:36
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

If life gives you lemons , then make lemonade

User
Posted 05 Jun 2019 at 17:35

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

User
Posted 05 Jun 2019 at 18:16
Congrats

Brian’s and Chris

Long may this be a flat or reducing line!

Steve

User
Posted 07 Jun 2019 at 16:49
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

User
Posted 07 Jun 2019 at 21:37

Bri

Have fun, bit of advice dab don't wipe.

Thanks Chris

 
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