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Waiting on first referral to urologist after high PSA (and panicking!)

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User
Posted 30 Sep 2019 at 04:17

Hi all, I'm a 44yo, currently losing sleep as I wait to see a specialist (later on today) following a first PSA reading of 17. My GP decided to add the PSA test to routine blood work I had asked for, purely on account of my age, not because of any specific symptoms. Prior to that in fact, I had no real health problems to speak of, bar a bit of an irritable bowel. Since I got the results back on Thursday, however, I've been a complete mess and mysterious aches and pains (shoulder, arms, legs) seem to have suddenly appeared from nowhere. Being a complete hypochondriac, I'm inclined to put them down to an overactive imagination, but in the meantime I'm having serious trouble sleeping and have completely lost my appetite. Anyway, I'm pleased to have found this forum - reading everyone's stories is definitely a much better use of my time than pacing up and down in a blind panic. 


Cheers


Dan

User
Posted 30 Sep 2019 at 08:24
Dan, we've all been there, and the way you're feeling at the moment is completely understandable. Unfortunately you are in for a lengthy wait (probably 1-2 months) before all the tests have been done and a diagnosis can be given. Given your significantly raised PSA level, the urologist will almost certainly advise an MRI scan followed by a biopsy. If the biopsy comes back positive (and it may not, of course) there would then normally be a bone scan to make sure the cancer hasn't spread. Each of these stages of diagnosis will take two or three weeks.

If you are struggling with anxiety (as I myself did) I'd strongly urge you to visit your GP and get something to help. My GP prescribed a drug called Sertraline, and it really helped me.

If you have any medical questions about what's going on, have a chat with the PCUK nurses on the Freephone number at the top of the page. They are very knowledgeable and helpful.

Until you get your results, just take things one day at a time, DON'T assume the worse and DON'T consult "Doctor Google"!

Best wishes,

Chris
User
Posted 30 Sep 2019 at 09:09

All your reactions are normal and very understandable. Take one day at a time and try to keep up your normal routine. It is the waiting that is hard but distraction  helps and physical activity like walking and noticing life outside yourself.. I hope you have someone close enough to share your feelings with and try to focus on the positive things.  I wish you well and talk to us here if things get too overwhelming.

Edited by member 13 Nov 2019 at 22:25  | Reason: Not specified

User
Posted 30 Sep 2019 at 10:27

Hi Dan  A high PSA does not necessarily mean you have Prostate Cancer. There are other reasons mainly enlarged prostate and infections.


Did your GP do  a rectal examination and did he feel anything amiss? Have they ruled out an infection? I know this is a very difficult time but hopefully you will be a bit closer to finding out today.


Keeping my fingers crossed for you.


Ann

Edited by member 30 Sep 2019 at 10:47  | Reason: Not specified

User
Posted 30 Sep 2019 at 11:44

Hi dan 


sorry to see you on this site,But its where you’ll get the best info/support.Like you I had no symptoms and my PC was picked up on a blood test. But my PSA was 32 rising to 47 before treatment started. Please remember that the PSA test is unreliable (thats why the government will not use it as a standard cancer test) and as already stated other things can lead to a high PSA Like you as soon ad i was told by my gp the results of my blood test ihad every niggling ache and pain in the known world none of which turned out to be cancer related. So try not to panic as PC is a very slow growing cancer and i had probably had mine festering away for a number of years. Mine had not broken through the prostate and was therefore classed as curable.It has been two years now and my PSA is .7 and which is as expected as i am no longer on hormone pills or any kind of treatment and so i am now once more producing testosterone Let us now how your getting on

User
Posted 30 Sep 2019 at 22:21
Sounds like a very sensible approach, Dan. At your age, raised PSA is much more likely to be caused by a UTI than by prostate cancer, so the course of Ciproxin will treat that if that’s what it is.

Please keep us informed as to your progress.

Best wishes,

Chris
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User
Posted 30 Sep 2019 at 08:24
Dan, we've all been there, and the way you're feeling at the moment is completely understandable. Unfortunately you are in for a lengthy wait (probably 1-2 months) before all the tests have been done and a diagnosis can be given. Given your significantly raised PSA level, the urologist will almost certainly advise an MRI scan followed by a biopsy. If the biopsy comes back positive (and it may not, of course) there would then normally be a bone scan to make sure the cancer hasn't spread. Each of these stages of diagnosis will take two or three weeks.

If you are struggling with anxiety (as I myself did) I'd strongly urge you to visit your GP and get something to help. My GP prescribed a drug called Sertraline, and it really helped me.

If you have any medical questions about what's going on, have a chat with the PCUK nurses on the Freephone number at the top of the page. They are very knowledgeable and helpful.

Until you get your results, just take things one day at a time, DON'T assume the worse and DON'T consult "Doctor Google"!

Best wishes,

Chris
User
Posted 30 Sep 2019 at 09:09

All your reactions are normal and very understandable. Take one day at a time and try to keep up your normal routine. It is the waiting that is hard but distraction  helps and physical activity like walking and noticing life outside yourself.. I hope you have someone close enough to share your feelings with and try to focus on the positive things.  I wish you well and talk to us here if things get too overwhelming.

Edited by member 13 Nov 2019 at 22:25  | Reason: Not specified

User
Posted 30 Sep 2019 at 10:27

Hi Dan  A high PSA does not necessarily mean you have Prostate Cancer. There are other reasons mainly enlarged prostate and infections.


Did your GP do  a rectal examination and did he feel anything amiss? Have they ruled out an infection? I know this is a very difficult time but hopefully you will be a bit closer to finding out today.


Keeping my fingers crossed for you.


Ann

Edited by member 30 Sep 2019 at 10:47  | Reason: Not specified

User
Posted 30 Sep 2019 at 11:44

Hi dan 


sorry to see you on this site,But its where you’ll get the best info/support.Like you I had no symptoms and my PC was picked up on a blood test. But my PSA was 32 rising to 47 before treatment started. Please remember that the PSA test is unreliable (thats why the government will not use it as a standard cancer test) and as already stated other things can lead to a high PSA Like you as soon ad i was told by my gp the results of my blood test ihad every niggling ache and pain in the known world none of which turned out to be cancer related. So try not to panic as PC is a very slow growing cancer and i had probably had mine festering away for a number of years. Mine had not broken through the prostate and was therefore classed as curable.It has been two years now and my PSA is .7 and which is as expected as i am no longer on hormone pills or any kind of treatment and so i am now once more producing testosterone Let us now how your getting on

User
Posted 30 Sep 2019 at 22:13

Thanks everyone so much for taking the time to reply - it's great to get your advice and has helped me feel much less alone in dealing with this.
I just wanted to give you a quick update: I saw the urologist this afternoon, who gave me a DRE and found nothing of note. He's given me a course of Ciproxin (500mg tablets twice daily for a week), and Topster (suppositories - 1 each evening for a week) to eliminate/rule out any infection, Fifteen days after that I'm supposed to repeat the PSA (but for free, total and free/total) and get an ultrasound of the urinary system and a flow test done.


From what I've been able to glean online, I gather that this is a fairly standard approach (and to be honest I'm just happy to have made a start with things), but I couldn't help noticing he decided not to go with the MRI that Chris expected, at least for the time being. As I'm still very much in panic mode, with every ache and pain scaring the hell out of me, I'm wondering whether that's something I should maybe be asking my GP for in the meantime. Just to be clear, I live in Italy, so I'm guessing things may possibly work differently to the UK. In particular, although there are a lot of great doctors here, I get the impression that the system isn't quite as intergrated as it is in Britain, meaning patients might sometimes need to take the initiative a bit.  


That's all for now - thanks again to everyone for all your advice and kind words.!


Cheers



Dan

User
Posted 30 Sep 2019 at 22:21
Sounds like a very sensible approach, Dan. At your age, raised PSA is much more likely to be caused by a UTI than by prostate cancer, so the course of Ciproxin will treat that if that’s what it is.

Please keep us informed as to your progress.

Best wishes,

Chris
 
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