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Just need some support - psa raised

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User
Posted 06 Jan 2017 at 14:34

Hi, I am 64 year old living in south Beds.

About 2 years back I went to the GP due to night-time disturbance. It was once per night and for the record is the same now. At that first appt the GP did a DRE and said I had an enlarged prostrate but it was smooth. We discussed a PSA and decided that it seemed that they are not that accurate, so I left it. I went back some time later and saw another GP and asked if I should do anything now? He confirmed the smoothness (but did not do a DRE). 

Long story short. I decided a few weeks back to do a health check as offered by the NHS, the GP I saw did a general examination (lungs etc) and ordered a full range of blood test (I was concerned about diabetes). When the results came in, the PSA was high, I am not going to state the exact figure but it was over 10. She did a DRE and confirmed the earlier results, smooth and enlarged. I was kind of relying on the smooth aspect to mean it was benign but of course nobody knows without doing a biopsy etc.

So, the plan is for another test next week and then probably a referral to a urologist who will take things further. I have read up on the helpful site and seen other's experience so I have some idea of the expectations.

Just a couple of questions please: Does anyone know about the service for this specialism in my area? That would be Milton Keynes, Stoke Mandeville, Luton & Dunstable. Oh, I am also a bit unusual in that a MRI may not be an option as ai have a (cochlea) implant. That limits it to 1.5 Tesla strength. Not a lot of fun either from reading the CI forums, but how ofter do people get the MRI I was wondering?

Thanks, I look forward to your responses as I am feeling a bit despondent.

User
Posted 06 Jan 2017 at 15:41

Hello Ian and welcome to the site.

I expect you are feeling a bit low and despondent with the thought of having Prostate Cancer hanging over you.

We all know that feeling. The waiting seems to go on forever.

High PSA can be scary and if as you say you have been looking at the site for a while you may see that for some men it's been in the hundreds and sometimes even thousands and yes they do tend to have more aggressive cancers.

PSA though is mainly an indication that something needs looking at. It would be the Biopsy results and the Gleason scores which would indicate a) whether you actually have PC and b) what the grading is. The higher the grading the more aggressive.

However, even aggressive cancers can be treated and we don't know yet what stage you are, so although you are currently feeling "down" about it all, take heart from the many men on here who are being/have been treated and are getting on with their lives, even those who are in the no cure camp.

You will get a lot of support on here.

When you go to see the urologist try and write down your list of questions and make a note of the answers. If possible take somebody with you as two pairs of ears are better than one.

You could look at The Toolkit available from this sites Publications but really, until you know what you are dealing with I'm not sure that will help.

Hopefully others will soon be along to offer their support too.

Best Wishes

Sandra

Edited by member 06 Jan 2017 at 15:42  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 06 Jan 2017 at 16:57

Hi Ian (great user name!)

I don't have any specific knowledge to offer re your questions but would agree with everything that Sandra has said...it probably doesn't help much to know that this is the tough bit and you are bound to start thinking the worst while you are waiting. And of course it's pointless telling you not to worry. But I don't doubt that forum members will be along soon to give you specific help, particularly when you know a little more about what you are dealing with. And there will be shed-loads of support and understanding.

Good luck to you. Let us know how you get on.

Best wishes

Eleanor

User
Posted 06 Jan 2017 at 17:08

Hi Ian

Sorry you find yourself here.

As Sandra said, it's all very worrying at this stage especially waiting for the next appointment and not knowing exactly what's going on with your condition.

The biopsy is the procedure which will give you a better idea. They can use the MRI to better target the biopsy, but they could still sample without the MRI. Others on here may have experience similar to you and will offer further advice.

Good luck with your appointments. Once you have information, update your profile so members can see your history - it saves repeating yourself in other conversations. And don't hesitate to reach out to this community - it's a wonderfully supportive bunch!

Chris

User
Posted 06 Jan 2017 at 17:12

Hi Ian

As others have said it's worrying when you don't have all the information. That will improve once you are more informed.

However, IMO I am surprised that the GP did not refer you to urology based upon the significantly elevated PSA. Don't misunderstand me it is not off the radar but it is higher than it should be for your age.

At this point I suppose your next PSA result will determine actions

Good luck mate and keep us updated

Bri

User
Posted 20 Jan 2017 at 18:24

It is a difficult time, possibly the worse time, trying to get the tests which will reveal your future path. There are waits and this builds the tension. But if you can suspend judgment until the results come in this will help.

You are right that mri's are being used more, not instead of biopsies but to help guide it. But many don't have it and many of us here had biopsies before that protocol. The biopsy was fine from my perspective though the result not helpful and subsequent tests showed spread in the bones so incurable. I had a PSA of 7.5 BUT other people have PSA's above 20 and above so don't read too much into the number it all depends.

I mention my situation only to tell you that I am still here five years on and reasonably ok. It is a disease which for many people, (though sadly not all) can give you time even if the results are unhelpful.

Get through all the tests and keep optimistic and please report the detail back here there are many who can talk you through whatever your diagnosis.

Good luck in the journey nobody chooses but in which so many tread, there to support you too.

User
Posted 21 Feb 2017 at 11:30

That's great news about your biopsy.
Sorry to hear about the other issues you are facing though. Hope they find a solution for you soon.
Julie

User
Posted 23 Feb 2017 at 16:45
I

My urethral stricture is caused by scar tissue forming and growing at the joint where the urethra is rejoined to the bladder neck. This then reduces the internal diameter of the urethra and slows the flow of urine. So it is a condition.

There are other causes of urethral strictures.

Thanks Chris

Edited by member 23 Feb 2017 at 16:46  | Reason: Not specified

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User
Posted 06 Jan 2017 at 15:41

Hello Ian and welcome to the site.

I expect you are feeling a bit low and despondent with the thought of having Prostate Cancer hanging over you.

We all know that feeling. The waiting seems to go on forever.

High PSA can be scary and if as you say you have been looking at the site for a while you may see that for some men it's been in the hundreds and sometimes even thousands and yes they do tend to have more aggressive cancers.

PSA though is mainly an indication that something needs looking at. It would be the Biopsy results and the Gleason scores which would indicate a) whether you actually have PC and b) what the grading is. The higher the grading the more aggressive.

However, even aggressive cancers can be treated and we don't know yet what stage you are, so although you are currently feeling "down" about it all, take heart from the many men on here who are being/have been treated and are getting on with their lives, even those who are in the no cure camp.

You will get a lot of support on here.

When you go to see the urologist try and write down your list of questions and make a note of the answers. If possible take somebody with you as two pairs of ears are better than one.

You could look at The Toolkit available from this sites Publications but really, until you know what you are dealing with I'm not sure that will help.

Hopefully others will soon be along to offer their support too.

Best Wishes

Sandra

Edited by member 06 Jan 2017 at 15:42  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 06 Jan 2017 at 15:44

Thanks Sandra.

User
Posted 06 Jan 2017 at 16:57

Hi Ian (great user name!)

I don't have any specific knowledge to offer re your questions but would agree with everything that Sandra has said...it probably doesn't help much to know that this is the tough bit and you are bound to start thinking the worst while you are waiting. And of course it's pointless telling you not to worry. But I don't doubt that forum members will be along soon to give you specific help, particularly when you know a little more about what you are dealing with. And there will be shed-loads of support and understanding.

Good luck to you. Let us know how you get on.

Best wishes

Eleanor

User
Posted 06 Jan 2017 at 17:08

Hi Ian

Sorry you find yourself here.

As Sandra said, it's all very worrying at this stage especially waiting for the next appointment and not knowing exactly what's going on with your condition.

The biopsy is the procedure which will give you a better idea. They can use the MRI to better target the biopsy, but they could still sample without the MRI. Others on here may have experience similar to you and will offer further advice.

Good luck with your appointments. Once you have information, update your profile so members can see your history - it saves repeating yourself in other conversations. And don't hesitate to reach out to this community - it's a wonderfully supportive bunch!

Chris

User
Posted 06 Jan 2017 at 17:12

Hi Ian

As others have said it's worrying when you don't have all the information. That will improve once you are more informed.

However, IMO I am surprised that the GP did not refer you to urology based upon the significantly elevated PSA. Don't misunderstand me it is not off the radar but it is higher than it should be for your age.

At this point I suppose your next PSA result will determine actions

Good luck mate and keep us updated

Bri

User
Posted 06 Jan 2017 at 17:29

Thanks Bri, I am going to ask for referral sooner than planned at present.

User
Posted 07 Jan 2017 at 05:10

Hi I must say it is a bit of a mine field when you first get on the PC ladder as it was with me but i soon found the express treatment and appointments at the Lister Hospital from April to September and the attention to detail of all departments that looked after me from the team at Lister to my Brachytherapy operation at Mount Vernon was first class.

I have my first blood test for PSA results mid January and a visit to the specialist back at the Lister on the 31st to see the progress and if the seeds are doing their job.I wish you good luck for your treatment.

Regards John. 

User
Posted 20 Jan 2017 at 13:20

Hi, an update. I saw my GP and got referred pdq to the L&D. Very straightforward process, spoke to the consultant and expected him to do a biopsy there and then, even bought parking for 4 hours in that expectation. As it happened after the usual DRE he said it would be the transperineal biopsy that would be done. So next day the pre-surgery checks done and today I have the letter and am destined to go in on the 3rd Feb.

They did originally ask for an MRI but as I may have mentioned as I have a cochlear implant that is not a straightforward option. My CI centre at Oxford offered to do it under their protocols but the consultant said 'no need'. Question is there anyone else precluded from MRIs due to say heart pacemakers? How did you feel about that closing your options?

Just looking at the news today on this topic I see that the MRI is preferred to biopsy but I think that is the other sort of biopsy that has some risks and is not thorough enough if I read the reports correctly.

So at the moment I am just scared witless with a) the general anaesthetic and so on and b) the result options when they come after a couple of weeks. I was told it was 50/50 PCa risk due to my high PSA (> 10).

Ian

User
Posted 20 Jan 2017 at 18:24

It is a difficult time, possibly the worse time, trying to get the tests which will reveal your future path. There are waits and this builds the tension. But if you can suspend judgment until the results come in this will help.

You are right that mri's are being used more, not instead of biopsies but to help guide it. But many don't have it and many of us here had biopsies before that protocol. The biopsy was fine from my perspective though the result not helpful and subsequent tests showed spread in the bones so incurable. I had a PSA of 7.5 BUT other people have PSA's above 20 and above so don't read too much into the number it all depends.

I mention my situation only to tell you that I am still here five years on and reasonably ok. It is a disease which for many people, (though sadly not all) can give you time even if the results are unhelpful.

Get through all the tests and keep optimistic and please report the detail back here there are many who can talk you through whatever your diagnosis.

Good luck in the journey nobody chooses but in which so many tread, there to support you too.

User
Posted 20 Jan 2017 at 19:46

Hi Ian,

My diagnosis and treatment are not exactly the same as yours.  (See my profile for detail)  However I have experienced the pleasure of a trans-perineal biopsy, also known as a 'template biopsy', and hopefully my experience will help to reassure you.

When first diagnosed I had a TRUS biopsy, which really does bring tears to your eyes, and the problem with the TRUS route is that it only takes samples from around half the prostate gland.

Subsequently when cancer came back, the MRI scan alone was not considered sufficient to determine precise location of cancer tissue, hence they gave me a trans-perineal biopsy, and this is what they used to determine my treatment.

So please don't think you are being fobbed off with second rate biopsy, you are merely being fast forwarded to the ultimate form of precise diagnosis.

AND it doesn't hurt, you are under anaesthetic, just like a nice sleep, the worst thing about it is the enema before hand, and if you have already had DRE's you don't have to worry about losing your dignity.

Oh, by the way, my initial PSA was 30 and my GP told me not to jump to conclusions, she had known men with higher PSA's caused by benign non cancerous causes.

:)

Dave  

   

User
Posted 20 Jan 2017 at 20:04

Hi Dave, thank you very much for that encouragement. I am 'happy' if that is the right word regarding the transperineal choice as I understand the TRUS has some significant downsides like you mention. I also appreciate your openness about the initial PSA score. My second PSA reading came down a few notches but still frightens me a bit. All the docs to whom I have voiced fears play down the significance and say that as there are no other indicators it is a good sign. Well, maybe.

Much appreciate the support from all the posters above I should add.

Ian

User
Posted 21 Feb 2017 at 11:02

Hello again. Since I last posted I have had the biopsy that, the consultant said was cancer free. I was of course very relieved with that news, however it is not all plain sailing.

The day after the procedure, they took out the catheter, boy was that painful. Blood and who know what flowed out as well. I managed to pass water a few times so was sent home. This was the Saturday. Come Sunday I was blocked up and ended up in A&E desperate for a solution. The problem is though that I have some slight 'defect' around that area and inserting a new catheter was problematic, but was solved with some other techniques. So 2 weeks later they take it out, yesterday. Again I could not pee at all and was going bonkers (the effects are quite frightening!). So this time they managed to get a camera down there and do the same technique used in A&E.

So, here I am with soreness and wondering if it will ever be back to normal. I go back in 2 weeks to see if I am able to release urine but I don't hold much hope. The nurse was very reassuring saying it is not uncommon but then again it is me having this problem.

I can also say the staff and attention I have received at Luton & Dunstable are first class.

So I am of course very glad that I know where I stand, the thoughts I was having before this news were, as others here must know, quite low. I hope this give some encouragement to others who have a high PSA result that all is not lost.

User
Posted 21 Feb 2017 at 11:30

That's great news about your biopsy.
Sorry to hear about the other issues you are facing though. Hope they find a solution for you soon.
Julie

User
Posted 22 Feb 2017 at 16:26

DD

Good news about the biopsy.

I have had quite a few instances of retention. I am not quite in the same situation as you, I no longer have a prostate. I think I have had about 10 TWOCs and never failed yet. When going for my trial without catheter (TWOC)I would steadily drink more water than normal, stay calm and be relaxed. After removal of the catheter I would follow the advice of the urology nurses and drink water in a controlled and steady way, i.e. little and often not a full glass / jug in one go. I have a urethral stricture and following a successful TWOC I was given some catheters and shown how to self catheterise, I now never leave home without a couple of catheters in my pocket.

Hope all goes well for your next TWOC

Thanks Chris

 

User
Posted 23 Feb 2017 at 08:42

Hi Chris, thanks for your perspective on that. Sorry to learn that you no longer have a prostrate. I made the mistake of not drinking sensibly, taking too much liquid on board too fast. Next time I will sip as one of the nurses said I should do.

Apologies but can I ask what is the 'urethral stricture', is this a condition or a fix please?

Thanks

Ian

User
Posted 23 Feb 2017 at 16:45
I

My urethral stricture is caused by scar tissue forming and growing at the joint where the urethra is rejoined to the bladder neck. This then reduces the internal diameter of the urethra and slows the flow of urine. So it is a condition.

There are other causes of urethral strictures.

Thanks Chris

Edited by member 23 Feb 2017 at 16:46  | Reason: Not specified

 
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