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Perseverance!

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User
Posted 15 May 2015 at 10:01

Although my fate is not yet known I'm a little confused why last year my oncologist signed me off even though my PSA was still higher than it should have been. In 2013 it was 16.8 then last year 13.5 and this year 10.5. My GP and oncologist explained to me at the time that although my PSA was high it was lower than the previous year so also taking into consideration that my prostate was confirmed as being enlarged too no further investigation was taken by either of them.

Then this year I had a new doctor that viewed my PSA results with me. After viewing my file she recommended that I have an MRI scan which I had last month. The results of this scan suggested that there was something abnormal in my prostate hence me having to go and get some more biopsies carried out in two weeks time! So although I feel that my case was neglected for a year through the wrong decisions made by my team I'm glad that my new doctor insisted on me having an MRI scan.

What does everyone else think?

User
Posted 16 May 2015 at 19:35

Hello Bullseye.
Glad you have a new GP. They aren't gods and don't always get it right, they are after all only human.

It is good though that you have one to take your results seriously. At least you'll know now whether there is anything to worry about and they will get it sorted for you.

Keep us up to date -we are a nosy lot !

Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 15 May 2015 at 22:13
Bullseye

I have a workmate who had higher PSA readings than yours had two biopsies and was then told there was nothing to worry about.He is 65, he will still be monitored.

Thanks Chris

User
Posted 16 May 2015 at 10:24

Bullseye

Unfortunately, although PSA is an indicator, it is not the be all and end all. Let's hope your previous GP was right not to be worried.

Paul

Stay Calm And Carry On.
User
Posted 30 May 2015 at 15:03

Only a biopsy will tell you what you want to know I.e. Whether your Psa level indicates presence or not of PCa. Regular blood tests can only compare one with another. many people do have PCa with low PSAs I had so with a PSA of 7.5 but the actual figure is less important than the trend. For peace of mind I would undertake the biopsy and then you will have more knowledge to make decisions.

If you are worried about the biopsy itself it is a relatively straightforward procedure, a little undignified but for most not painful. There is a risk of infection but they do give you a course of antibiotics to avoid that. I found it ok at the time and hopefully it is not too bad. Good luck and let us all know what transpires.

User
Posted 30 May 2015 at 17:41

Biopsy for peace of mind bullseye.

It isn't pleasant and the discomfort afterwards isn't pleasant either BUT at least you'll know pretty much for certain where you stand.
As Paul says, blood tests are OK in their way but are not difinitive, merely an indication.

According to your profile, the doc said you could go on Active Surveillance but you are unsure what that is.

If the results are within certain limits and the consultant feels it's relevant, then he'll offer AS which just means that you are actively monitored with regular blood tests and biopsies until such time as it becomes neccessary for treatment to be considered. My husband was on AS for a year before he had to decide which path to take.

As for the aftermath of the 10th June, you are likely to be sore and also to pass blood in your urine. Nothing to worry about but it can be offputting. It may still be present if you are sexually active with the girlfriend but a condom will sort that out. Some people have it worse than others for a few days.

Wear loose clothing but well fitting pants to hold a pad or two, just for peace of mind.
Best wishes
Sandra

Edited by member 30 May 2015 at 17:42  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 30 May 2015 at 17:52

Hi bullseye60,

Not wishing to worry you but to be clear a biopsy is probably the best chance to detect cancerous cells within the prostate, but a biopsy is not infallible. A needle my miss a cancerous cell by fraction of a millimetre, and if the swiss cheese effect happens, a false diagnosis may be given.

Are you having a template biopsy or random sampling? IIWM I would feel happier now that your GP is proactively checking every possibility with you and for you.

dave

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 13 Jun 2015 at 12:19

Best wishes with the results . Yes the biopsies aren't pleasant , and I had 2 aswell , and also a template biopsy as a day case. My PSA was high too , and it took all those tests and 2 MRI's and a bone scan and a CT scan before they eventually really found the aggressive cancer . My PSA was 43 then . I was told that if my PSA remained steady , despite its high value then they might have left me on surveillance . Although high , you seem quite steady . Here's hoping the best for you

Chris

User
Posted 22 Jun 2015 at 22:39

Good luck for the results Bullseye.
Hope they go well for you
All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 13 Jul 2015 at 16:36

Ok mate all the very best . Does seem a long time . But yes they have a discussion at an MDT ( Multi Discipline Team ) meeting , which can include Urologist , Oncologist , Radiologist , Specialist Prostate nurse etc . Others on here will know better than I . They discuss your case individually and when decided on their general agreement as to your treatment they invite you in .

User
Posted 14 Jul 2015 at 16:21
I think I would be smiling if I were you, the urine flow test is probably just to make sure you are not retaining any urine in your bladder as that can cause infections etc. and that your enlarged prostate is not hampering your flow rate.

If they find that your prostate is preventing a good or efficient enough flow rate they may offer you a procedure called a TURP (Trans urethral resection of the prostate I think), this is done under either spinal block or general anaesthetic is a short and quite simple procedure to shave out the gland around the urethra to stop it from restricting flow. Sometimes in and out in a day sometimes an overnight stop in hospital,

I assume you will continue to be monitored regularly by your GP.

Best wishes

xx

Mo

User
Posted 14 Jul 2015 at 16:56

Originally Posted by: Online Community Member

Update; I had a phone call today at 130pm from oncologists secretary. She told me that biopsies were clear but they still want me to go in for a urine flow test so I'm not sure whether to smile or cry at the moment.



I would most certainly be smiling  bullseye60  if I were you....... What a relief!....so to speak http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Best Wishes
Luther

 

 

User
Posted 14 Jul 2015 at 17:05

Sounding like the sort of news I'd be wanting to hear.And if the flow rate ain't bothering you .... Best Wishes
Chris

Edited by member 14 Jul 2015 at 17:07  | Reason: Not specified

User
Posted 14 Jul 2015 at 19:48

Phew, great news after a long wait.

Very pleased for you Bullseye.

My husband also had to have a urine flow check done, both before procedure and afterwards and then had to have a camera put through as they thought he was retaining.

Whether it was the result of the camera being pushed into places it really shouldn't be pushed or they were just over cautious, he didn't need anything further done.

It's good in any case that they are continuing to monitor you.

We can't control the winds - but we can adjust our sails
Show Most Thanked Posts
User
Posted 15 May 2015 at 22:13
Bullseye

I have a workmate who had higher PSA readings than yours had two biopsies and was then told there was nothing to worry about.He is 65, he will still be monitored.

Thanks Chris

User
Posted 16 May 2015 at 10:24

Bullseye

Unfortunately, although PSA is an indicator, it is not the be all and end all. Let's hope your previous GP was right not to be worried.

Paul

Stay Calm And Carry On.
User
Posted 16 May 2015 at 19:35

Hello Bullseye.
Glad you have a new GP. They aren't gods and don't always get it right, they are after all only human.

It is good though that you have one to take your results seriously. At least you'll know now whether there is anything to worry about and they will get it sorted for you.

Keep us up to date -we are a nosy lot !

Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 30 May 2015 at 13:34

Update;

Had my ct scan on Thursday for my bowel problem. Actual scan procedure was fine but the previous 24 hours weren't as I could only drink liquids plus I had to take two sachets of Citrafleet which wasn't very pleasant to say the least.

I've got my appointment to have 14 biopsies taken from my prostate on 10TH June though not really looking forward to it! It says on appointment letter that my alternative to having this done would be to have regular blood tests etc done so what would you do in my situation?

User
Posted 30 May 2015 at 15:03

Only a biopsy will tell you what you want to know I.e. Whether your Psa level indicates presence or not of PCa. Regular blood tests can only compare one with another. many people do have PCa with low PSAs I had so with a PSA of 7.5 but the actual figure is less important than the trend. For peace of mind I would undertake the biopsy and then you will have more knowledge to make decisions.

If you are worried about the biopsy itself it is a relatively straightforward procedure, a little undignified but for most not painful. There is a risk of infection but they do give you a course of antibiotics to avoid that. I found it ok at the time and hopefully it is not too bad. Good luck and let us all know what transpires.

User
Posted 30 May 2015 at 17:41

Biopsy for peace of mind bullseye.

It isn't pleasant and the discomfort afterwards isn't pleasant either BUT at least you'll know pretty much for certain where you stand.
As Paul says, blood tests are OK in their way but are not difinitive, merely an indication.

According to your profile, the doc said you could go on Active Surveillance but you are unsure what that is.

If the results are within certain limits and the consultant feels it's relevant, then he'll offer AS which just means that you are actively monitored with regular blood tests and biopsies until such time as it becomes neccessary for treatment to be considered. My husband was on AS for a year before he had to decide which path to take.

As for the aftermath of the 10th June, you are likely to be sore and also to pass blood in your urine. Nothing to worry about but it can be offputting. It may still be present if you are sexually active with the girlfriend but a condom will sort that out. Some people have it worse than others for a few days.

Wear loose clothing but well fitting pants to hold a pad or two, just for peace of mind.
Best wishes
Sandra

Edited by member 30 May 2015 at 17:42  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 30 May 2015 at 17:52

Hi bullseye60,

Not wishing to worry you but to be clear a biopsy is probably the best chance to detect cancerous cells within the prostate, but a biopsy is not infallible. A needle my miss a cancerous cell by fraction of a millimetre, and if the swiss cheese effect happens, a false diagnosis may be given.

Are you having a template biopsy or random sampling? IIWM I would feel happier now that your GP is proactively checking every possibility with you and for you.

dave

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 07 Jun 2015 at 12:45

Thanks again for your replies very much appreciated. Just thought that I would clarify that after my first psa reading of 16.8 in 2013. I had 12 biopsies taken plus a bone scan which both came back negative! My psa  last year was 13.5 for which my oncologist discharged me saying that psa had come down. Then this year it was 10.5 which is where I'm at now.

Today is the day I'm going in again to have my 14 biopsies taken I'm not looking forward to it but its got to be done!

 

Edited by member 10 Jun 2015 at 10:24  | Reason: Not specified

User
Posted 13 Jun 2015 at 12:03

Hello again,

Had my 14 biopsies taken on Wednesday which wasn't very pleasant but had to be done! Just got an anxious wait now for results!

 

User
Posted 13 Jun 2015 at 12:19

Best wishes with the results . Yes the biopsies aren't pleasant , and I had 2 aswell , and also a template biopsy as a day case. My PSA was high too , and it took all those tests and 2 MRI's and a bone scan and a CT scan before they eventually really found the aggressive cancer . My PSA was 43 then . I was told that if my PSA remained steady , despite its high value then they might have left me on surveillance . Although high , you seem quite steady . Here's hoping the best for you

Chris

User
Posted 22 Jun 2015 at 21:06
Best wishes and fingers crossed for good results

Louise

User
Posted 22 Jun 2015 at 22:39

Good luck for the results Bullseye.
Hope they go well for you
All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 12 Jul 2015 at 19:46

Its been 5 weeks on Wednesday since my biopsies were taken. Do you think that I should call them just in case they have forgotten about me?

User
Posted 12 Jul 2015 at 20:08

Definitely phone them and jiggy them on . Both my TRUS biopsies only took 2 weeks for results , and my day-case template biopsy ( 25 cores ) results only took 3 weeks , so id say you've been forgotten maybe . Well not forgotten - that's harsh maybe , but it does no harm at all to nudge them occasionally . Very best wishes and let us know
Chris

User
Posted 13 Jul 2015 at 16:23

Cheers Chris,
I phoned them today for which I was told that they had received my results but had to be discussed by my oncologist first. So hopefully I'll know my fate soon!

User
Posted 13 Jul 2015 at 16:36

Ok mate all the very best . Does seem a long time . But yes they have a discussion at an MDT ( Multi Discipline Team ) meeting , which can include Urologist , Oncologist , Radiologist , Specialist Prostate nurse etc . Others on here will know better than I . They discuss your case individually and when decided on their general agreement as to your treatment they invite you in .

User
Posted 14 Jul 2015 at 15:56

Update; I had a phone call today at 130pm from oncologists secretary. She told me that biopsies were clear but they still want me to go in for a urine flow test so I'm not sure whether to smile or cry at the moment.

User
Posted 14 Jul 2015 at 16:21
I think I would be smiling if I were you, the urine flow test is probably just to make sure you are not retaining any urine in your bladder as that can cause infections etc. and that your enlarged prostate is not hampering your flow rate.

If they find that your prostate is preventing a good or efficient enough flow rate they may offer you a procedure called a TURP (Trans urethral resection of the prostate I think), this is done under either spinal block or general anaesthetic is a short and quite simple procedure to shave out the gland around the urethra to stop it from restricting flow. Sometimes in and out in a day sometimes an overnight stop in hospital,

I assume you will continue to be monitored regularly by your GP.

Best wishes

xx

Mo

User
Posted 14 Jul 2015 at 16:56

Originally Posted by: Online Community Member

Update; I had a phone call today at 130pm from oncologists secretary. She told me that biopsies were clear but they still want me to go in for a urine flow test so I'm not sure whether to smile or cry at the moment.



I would most certainly be smiling  bullseye60  if I were you....... What a relief!....so to speak http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Best Wishes
Luther

 

 

User
Posted 14 Jul 2015 at 17:05

Sounding like the sort of news I'd be wanting to hear.And if the flow rate ain't bothering you .... Best Wishes
Chris

Edited by member 14 Jul 2015 at 17:07  | Reason: Not specified

User
Posted 14 Jul 2015 at 19:48

Phew, great news after a long wait.

Very pleased for you Bullseye.

My husband also had to have a urine flow check done, both before procedure and afterwards and then had to have a camera put through as they thought he was retaining.

Whether it was the result of the camera being pushed into places it really shouldn't be pushed or they were just over cautious, he didn't need anything further done.

It's good in any case that they are continuing to monitor you.

We can't control the winds - but we can adjust our sails
User
Posted 19 Jul 2015 at 08:42

Many thanks for all your replies its appreciated! I've got my appointment for my flow test which will be in early September then hopefully something will be done to stop me rushing off to the loo so often!

 
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