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Another journey - help with my rising PSA

User
Posted 02 Jul 2015 at 18:19

Hi whoever cares to read.

I 'm not in for ranting about my condition. I have prostate cancer and my future is not assured. I know many on a better path than mine but also a lot are much worse.

My PSA has risen today from 0.35 to 1.93 (3 month gap)  I have just finished 2 years on HT after 23 sessions of RT + Brachy (HDR)

Gleason 9 (4+5) T3

Will it rise again? Why is it doing it? Is it because I came off HT?

Sorry to be a bit self centred but I'm not sure of my next move if any. It concerns me and it hell worries me sick! 

You guys have been very supportive with your wisdom and knowledgeable views up to now - but I do need guidance.

Panick mode is setting in !!

 

Thanks 

 

Alan

 

User
Posted 02 Jul 2015 at 20:22
Alan

I am not sure how much help I can be but I don't want you worrying that nobody is replying.

The rise in PSA might be a bounce when you have had a break on treatment, PSA is a guidance tool for men In your position.

I believe the lovely onco at Leicester was saying it needs to be looked at relating back to first test results. So if your PSA was say 20 before treatment they may wait until it got close to that before recommencing HT. Others say anything over 15 needs further treatment.

In any event you still have a plethora of treatments available so try not to worry until you get to speak with your consultant.

Best wishes

Mo

Edited by member 02 Jul 2015 at 20:23  | Reason: Not specified

User
Posted 02 Jul 2015 at 20:23

Hi Alan,

I for one care to read, and I am sure toters will be long in due course, hopefully more experienced and better able to deal with your worries than I am.

You do sound understandably concerned and I wonder have you had a chance to discuss this with your GP or oncologist yet? Or whatever "title" the person looking are you has? Sorry to be a bit obscure but I have, thankfully, very little knowledge of HT and other treatments so far in my journey.

Looking purely at the rate of increase, I am not sure that it is a worry, when the result came were you offered further treatment or a consolation? If not, I would guess that your medical professionals are not overly worried either, but I would want conformation of that if I was in your boots.

If nothing else my reply will bump your post up and hopefully get the attention of someone better qualified to help you.

atb

dave

in the time it took me to compose my rather well meant and hopefully supportive reply I see Mo has responded far more informedly and eloquently than I could have.

Edited by member 02 Jul 2015 at 20:34  | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 02 Jul 2015 at 20:47

Hey Guys1

I savour every comment eloquent or otherwise on this forum (Dave). Believe me - just knowing you are all out there in the ether makes me chuffed no end.

My initial PSA was largish - 119.5. Post treatment it rapidly shot down to less than 0.5.

Mo - yes I read up on the "bounce" but nevertheless it's disconcerting when you get a worse result than last time. I only got the result today but see my Onco in October so I will get another test done before then and will go in armed with the results.

You know, we think we have the answers and chug along this journey but we never know the twists and turns that might throw us off course.

I'm living the dream that I shall have a fantastically low PSA one day. The reality may be something of a compromise.Looking at other's rocky roads I feel kind of humbled by it all and seeing what you've all been through or are going through makes for a heavy heart

I do feel pretty good physically. It's just a downer when you get the result however small the increase. 

Be lucky

 

Alan

User
Posted 02 Jul 2015 at 21:18

Hi Alan,

I think what you describe is what I've been told to expect when I finish HT.

My PSA was 48.85 at diagnosis. Following a year on HT and four weeks RT my latest PSA is 0.083.  When I finish HT in 18 months time, I've been told that my PSA will rise for a while and my onco said she would be happy if it eventually settled down to 2 to 2.5.

I think that maybe your increase is the effect of finishing HT and will settle down in due course.

Hope it goes well.

Steve

Edited by member 02 Jul 2015 at 22:13  | Reason: Not specified

User
Posted 02 Jul 2015 at 21:21

You say you feel humbled by other people's stories Alan , and I feel humbled by yours. And just recently I was an inspiration to someone even newer on here than myself. And I'm pretty damn new despite having RP a fortnight ago. This forum is for everybody and anybody I have learned , and is a help to those in need.
I know relatively nothing compared to the experts on here , but I can congratulate you on getting this far down the road and undergoing understandably unpleasant treatment. I hope this is a bounce only and wish you nothing but the best
Chris

User
Posted 02 Jul 2015 at 21:42

Hi Steve,

Thanks for your support. It's comforting to share knowledge - appreciated. I hope you're right about the settling down. It's a long road isn't it? - but time will tell. I'm a year ahead of you on the HT - good luck with that and hope you don't get too many side effects.

Chris - no treatment option is pleasant and I hope your treatment path proves to work out well for you.Different path but similar result hopefully.

Keep posting - newbies and others (including me) may gain something and take comfort from the knowledge and friendship given out in cartloads on this site. I agree we're not all experts - but by 'eck we're all learning fast!

 

Alan

 

User
Posted 02 Jul 2015 at 22:30

Calm down Alan, your PSA is behaving normally. I wonder if your treatment wasn't really explained to you properly at the outset? There is no point dreaming of a really low PSA if in your mind, that is somewhere in the 0.1 region ... or even less. It ain't gonna happen, mainly because you still have a prostate. Men who get those tiny numbers have had their offending gland removed.

Your last PSA at 0.35 was indicating that the hormones were starving the cancer which keeps the PSA artificially low - now that you are off the hormones, your PSA will rise to what will be 'normal' for you. If it stays around the 2 mark then there will be no concerns from your medical team. If not convinced, have a look at Ray's profile.

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

User
Posted 02 Jul 2015 at 22:32
Hi Alan

I know how it feels to have a rise in PSA especially if the doubling time is rapid, but the Onco will probably want to see what the next one or two PSA reading are to see if there is a consistent pattern before reacting. If the pattern and rate of rise is maintained then I would ask for a Choline PET/CT scan to pinpoint where the activity is situated and take it from there, but one thing to bear in mind is that you still have a prostate and this will be producing PSA so don't hit the panic button prematurely.

All the Best

Roy

Edited by member 02 Jul 2015 at 22:37  | Reason: Not specified

User
Posted 02 Jul 2015 at 23:55

Alan

As my profile shows it was circa 12 months before anything like an increase in PSA occurred but then I had nearly 4 years of HT so that might have delayed an earlier increase. Then it moved around a bit. If possible could you have a PSA test in the short term, via your GP if need be

Ray

I hasten to add to ease your mind not panic

Edited by member 02 Jul 2015 at 23:57  | Reason: Not specified

User
Posted 03 Jul 2015 at 04:11
Hi Lynne, Roy and Ray,

I acknowledge your combined greater experiences. It helps me to get my head around the long term effects of treatments. I suppose like anything with this disease everything is in slo-mo!

Like others my condition will reveal itself over time.

The trouble is that while my body takes it' s time showing symptoms my mind races away trying to figure it out. My partner's a real brick and offers her advice not necessarily on any scientific basis - just to throw everything into the pot! I know she's sharing my concerns - she's been this far with me so she' s not giving up on me yet (unsung hero award)

We're all trying to understand our own course along this path bit by bit - but then none of us have ever been along this way before - have we?

I hope this rant helps others even only if it gives out the message that while the body gets on with life the mind works overtime with every doubt and insecurity imaginable. I will post my next results and keep fingers and toes crossed.

Time for a beer. Cheers.

Alan

User
Posted 03 Jul 2015 at 07:22

seems like the good advice has arrived in abundance, I learn more everytime I read abit of information, sorry alan cant add to what has already been said on here, I asked about when my psa would be checked next only ever done when diagnosed in march but was told it would be monitored once I start my chemo which is september.

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 03 Jul 2015 at 11:48

Hi Nidge,

 

Best of luck with the chemo. I see from your profile you have your treatment well mapped out so all the very best with the outcome.

The people on this forum are amazing and you'll always get a response - so keep posting.

Alan

 

-- oh and keep on running

 

 
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