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User
Posted 20 Nov 2015 at 12:21

Hello!

63

On active surveillance for 3 years.

Have low grade prostate cancer with a Gleeson score of 6.

Like to find as much information as possible, to enable decision making.

PSA is creeping up.

Due for repeat blood test next week.

Thanks for all the work you do, have made use of the phone line, which was very helpful.

User
Posted 20 Nov 2015 at 20:42

Hello OldTez,

Welcome to the forum though sorry it is prompted by your rising PSA. As you may be looking at radical treatment sooner or later, it is indeed a good idea to learn more about PCa and possible treatments and side effects etc. A very good place to start is the 'Toolkit' - refer to the main part of this charity site. Also, It would be useful to know what your PSA was on diagnosis and is now and any more histology you can provide from diagnosis.

Barry
User
Posted 20 Nov 2015 at 21:02

Hi OldTez,

what information are you looking for? If you complete your profile with details about your current situation, staging, PSA results over the years, results of MRI scans etc you may get more response?

Even then, you might want to remember that everyone seems to be affected by whatever treatment option they have differently to everybody else?

Lots of people make a choice and some, maybe regret that choice. But, none of us can turn a clock back, so we all make our best decision on what we know at the time. There is no way of knowing if we had chosen differently, we might be better of? Or worse.

atb

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 21 Nov 2015 at 14:30

Are you still on Tamsulosin? If so, then your true PSA may be more in the region of 20 as tablets like Tams halve the real PSA measurement.

I would want to see another scan and then a targeted biopsy before making a decision about whether to have treatment.

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

User
Posted 21 Nov 2015 at 15:31

Hi Tez
I just wanted to say hello also . Its nice to see someone has stayed on Active Surveillance successfully for a long period of time rather than rush into treatments which essentially are life-changing. I hope your test goes ok and you have found all the support and information you could ever need here . The nurses are fantastic aren't they !!
All the very best
Chris

User
Posted 21 Nov 2015 at 18:40

Hi Tez,

another factor to consider when you decide whether to start treatment and if so which treatment option is your expected or anticipated longevity, based on your familial history. You are only a "kiddie" at 63.

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 21 Nov 2015 at 20:38

Hi Tez,

One thing which you may have come to realize is with different types of Prostate Cancer and it affecting men in different ways, it is best not to assume your cancer journey will be the same as another, though forum members often do post their own progress. Sometimes a case even has a consultant baffled. PCa cells sometimes indicate a lot of PSA when the cancer has not advanced whereas the converse can be true. Very high PSA levels do usually indicate more advanced cancer though. Your PSA is much lower but high enough to be of concern so you are being monitored and have had the advantage of biopsy and scans. Where considered appropriate, AS can be a good option providing regular monitoring is done and treatment given in good time if advisable. Some men readily accept this whilst others can't accept the cancer is within them and possibly growing, so opt for early treatment and accept the potential and likely variable side effects of treatment.

Barry
User
Posted 21 Nov 2015 at 21:44

Hi Tez my husband is 71 but been active surveillance nearly 3 years. In past year psa has gone up from original 6.6 at diagnosis to 13.5,he had a template biopsy in September which showed an increase from Gleason 6 to 7,also increase in cancer volume,he also had retention after the biopsy. He has been on tamsulosin for 15 years and we were never told this had any effect on psa readings. He has decided to have hormone treatment then radiotherapy next year,we were told that urinary problems during radiotherapy are often treated with tamsulosin which he is already on so oncologist said if he has problems passing urine may need catheter until after radiotherapy finished.

User
Posted 09 Dec 2015 at 15:46

Hello OldTez and a belated welcome from me as I was on holiday when you first posted.

You seem to have it under control as far as is possible at this stage. Glad the PSA is down slightly.

Please keep us up to date on anything else (MRI etc) as it all helps when offering advice

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 13 Dec 2015 at 10:45

Nurse telephoned.

Plan - repeat PSA on February 1st,

- MRI Scan February

....and then review.

Ho hum....

User
Posted 26 Feb 2016 at 12:17

Well PSA was down very slightly to 11.23 , on Feb 1st 2016.

Had MRI on 12 Feb 2016, which "shows no signs of high grade prostate cancer". ( biopsy showed cancer cells January 2013 Gleeson 6)

So my PSA has been just over 11 for the whole of 2015.

On that basis I have been offered to continue active surveillance on a PSA tracker, with PSA test every 3 months and

be seen in Out Patients in 6 months for a "prostate examination" ( I presume a digital examination).

The  size of my prostate is now enlarged to 68 cc  , "which probably explains why your PSA is slightly high"

The PSA tracker is now on an increased threshold of 14. (previously 11)

I have also been told that  a more "active treatment " is an option  and may contact them if I wish to discuss this.

I take Tamsulosin every morning

 

I am reasonably fit, have the usual issues with passing urine, and some occasional aches and pains around the groin and tops of thighs (prostatitis?)

So on balance I feel to continue the active surveillance and consider myself lucky.

Any comments/observations would be welcome.

Best regards to everyone.

 

 

 

 

 

User
Posted 26 Feb 2016 at 13:55

Excellent news OldTez - AS is not for everyone but it seems you are managing it well.

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

User
Posted 18 May 2016 at 09:16

Good news Tez that the PSA is staying fairly stable and things are under control. It's also good that there is a back up plan should you feel the time is right and it is needed.

Being on AS probably means that it is always on your mind about where it could end up but also reassuring that it does not need treatment at present.

Best wishes Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 08 Aug 2016 at 11:44

Hi Tez, good news with the small drop of PSA levels and that you will be staying on AS. Long may it continue, it doesn't stop the worrying every time the test is due so keep strong physically as well as mentally.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

Show Most Thanked Posts
User
Posted 20 Nov 2015 at 20:42

Hello OldTez,

Welcome to the forum though sorry it is prompted by your rising PSA. As you may be looking at radical treatment sooner or later, it is indeed a good idea to learn more about PCa and possible treatments and side effects etc. A very good place to start is the 'Toolkit' - refer to the main part of this charity site. Also, It would be useful to know what your PSA was on diagnosis and is now and any more histology you can provide from diagnosis.

Barry
User
Posted 20 Nov 2015 at 21:02

Hi OldTez,

what information are you looking for? If you complete your profile with details about your current situation, staging, PSA results over the years, results of MRI scans etc you may get more response?

Even then, you might want to remember that everyone seems to be affected by whatever treatment option they have differently to everybody else?

Lots of people make a choice and some, maybe regret that choice. But, none of us can turn a clock back, so we all make our best decision on what we know at the time. There is no way of knowing if we had chosen differently, we might be better of? Or worse.

atb

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 21 Nov 2015 at 14:19

Thanks for the welcome and replies.

Have the Toolkit.

Information gives me an informed choice. Whether it is from my hospital team, the Toolkit, fellow sufferers, this site , or the helpline.
It helps me get things straight in my head so I can make decisions.

As you say, Dave ,the best decision from what we know at the time, and what our circumstances are.

My PSA fluctuates.
In 2012 at the time of diagnosis it was 6.38.
MRI was satisfactory.
Rectal biopsy showed a Gleeson of 6. With a prostate volume of 49cc.
Therefore placed on active surveillance with 3 monthly blood tests.

In 2013 and 2014 PSA was up and down Between 6 and 10.
A MRI in 2014 showed no changes and another rectal biopsy was the same.
Volume of prostate had increased to 66.5cc.

PSA rose to 13.51 in Jan 2015 and I had a template biopsy, which was negative.
However I could not pass urine afterwards.
Was catheterised and put on Tamsulosin, catheter out 3 weeks later.
PSA down to 9.27

Was placed on PSA tracker which triggers Out Patients if PSA above 11.
PSA now 11.56 and repeating Friday.
If still over 11, then probable repeat MRI early next year, and take it from there.

So I guess the important decision is one that most sufferers face - stay on active surveillance-or go for treatment such as surgery?

These are the kind of questions I need to ask-

Is my fluctuating PSA due to enlargement of prostate and inflammation rather than increase in cancer?

Does there come a point when the enlarged prostate rules out robotic surgery as it is too big?

Are there complications, that others have suffered, from being on Tamsulosin for any length of time?

With surgery and removal of prostate then the cancer has gone, as long as it has not spread, but then my template biopsy was negative and MRIs okay. And I have to bear in mind the possible complications of any treatment. Im 'only' 63.

So making a judgement concerning surgical or other treatment becomes a matter of obtaining as much information as possible and making a choice.

-but I realise there may be no hard and fast answers.

Many thanks for listening/reading.
All the best.

Tez


User
Posted 21 Nov 2015 at 14:30

Are you still on Tamsulosin? If so, then your true PSA may be more in the region of 20 as tablets like Tams halve the real PSA measurement.

I would want to see another scan and then a targeted biopsy before making a decision about whether to have treatment.

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

User
Posted 21 Nov 2015 at 14:56

Thank you Lyn

Yes still on Tamsulosin.
Was told to stay on it.
Was not informed that Tamsulosin could effect PSA result.
Have been on it since February 2015.

I wonder if gradually coming off Tamsulosin would be an option?
I guess it depends on how I pass, or dont pass urine, if I come off it.

Before having the template biopsy and going on Tamsulosin my urine flow was poor but I did not feel there was a danger of retention.

User
Posted 21 Nov 2015 at 15:31

Hi Tez
I just wanted to say hello also . Its nice to see someone has stayed on Active Surveillance successfully for a long period of time rather than rush into treatments which essentially are life-changing. I hope your test goes ok and you have found all the support and information you could ever need here . The nurses are fantastic aren't they !!
All the very best
Chris

User
Posted 21 Nov 2015 at 18:14

Cheers Chris.

The support is brilliant.

Thank you for the welcome.

Take care

Tez

User
Posted 21 Nov 2015 at 18:40

Hi Tez,

another factor to consider when you decide whether to start treatment and if so which treatment option is your expected or anticipated longevity, based on your familial history. You are only a "kiddie" at 63.

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 21 Nov 2015 at 20:38

Hi Tez,

One thing which you may have come to realize is with different types of Prostate Cancer and it affecting men in different ways, it is best not to assume your cancer journey will be the same as another, though forum members often do post their own progress. Sometimes a case even has a consultant baffled. PCa cells sometimes indicate a lot of PSA when the cancer has not advanced whereas the converse can be true. Very high PSA levels do usually indicate more advanced cancer though. Your PSA is much lower but high enough to be of concern so you are being monitored and have had the advantage of biopsy and scans. Where considered appropriate, AS can be a good option providing regular monitoring is done and treatment given in good time if advisable. Some men readily accept this whilst others can't accept the cancer is within them and possibly growing, so opt for early treatment and accept the potential and likely variable side effects of treatment.

Barry
User
Posted 21 Nov 2015 at 21:44

Hi Tez my husband is 71 but been active surveillance nearly 3 years. In past year psa has gone up from original 6.6 at diagnosis to 13.5,he had a template biopsy in September which showed an increase from Gleason 6 to 7,also increase in cancer volume,he also had retention after the biopsy. He has been on tamsulosin for 15 years and we were never told this had any effect on psa readings. He has decided to have hormone treatment then radiotherapy next year,we were told that urinary problems during radiotherapy are often treated with tamsulosin which he is already on so oncologist said if he has problems passing urine may need catheter until after radiotherapy finished.

User
Posted 22 Nov 2015 at 14:12

Thank you for the comments and information.

Age is a factor when considering next steps.
Nice to be called a 'kiddie' !

Yes its an individual 'journey' with many things to take into consideration, hopefully without getting too 'bogged' down.

Hi Joan, I sincerely hope your husband does well with his treatment.

I consider myself lucky at the moment, the crux of the matter is deciding on the next steps.

Best regards

Tez

User
Posted 09 Dec 2015 at 15:06

PSA down a tad, to 11.30,on 27th November, (from 11.56 a month previously) awaiting a decision concerning MRI scan.

User
Posted 09 Dec 2015 at 15:46

Hello OldTez and a belated welcome from me as I was on holiday when you first posted.

You seem to have it under control as far as is possible at this stage. Glad the PSA is down slightly.

Please keep us up to date on anything else (MRI etc) as it all helps when offering advice

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 13 Dec 2015 at 10:45

Nurse telephoned.

Plan - repeat PSA on February 1st,

- MRI Scan February

....and then review.

Ho hum....

User
Posted 26 Feb 2016 at 12:17

Well PSA was down very slightly to 11.23 , on Feb 1st 2016.

Had MRI on 12 Feb 2016, which "shows no signs of high grade prostate cancer". ( biopsy showed cancer cells January 2013 Gleeson 6)

So my PSA has been just over 11 for the whole of 2015.

On that basis I have been offered to continue active surveillance on a PSA tracker, with PSA test every 3 months and

be seen in Out Patients in 6 months for a "prostate examination" ( I presume a digital examination).

The  size of my prostate is now enlarged to 68 cc  , "which probably explains why your PSA is slightly high"

The PSA tracker is now on an increased threshold of 14. (previously 11)

I have also been told that  a more "active treatment " is an option  and may contact them if I wish to discuss this.

I take Tamsulosin every morning

 

I am reasonably fit, have the usual issues with passing urine, and some occasional aches and pains around the groin and tops of thighs (prostatitis?)

So on balance I feel to continue the active surveillance and consider myself lucky.

Any comments/observations would be welcome.

Best regards to everyone.

 

 

 

 

 

User
Posted 26 Feb 2016 at 13:55

Excellent news OldTez - AS is not for everyone but it seems you are managing it well.

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

User
Posted 18 May 2016 at 08:46

PSA up slightly to 11.4. On May 3rd.

At the moment I am continuing on active surveillance.

Best regards to you all.

Tez

User
Posted 18 May 2016 at 09:16

Good news Tez that the PSA is staying fairly stable and things are under control. It's also good that there is a back up plan should you feel the time is right and it is needed.

Being on AS probably means that it is always on your mind about where it could end up but also reassuring that it does not need treatment at present.

Best wishes Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 26 May 2016 at 18:03

Cheers Chris.

Best regards.

User
Posted 08 Aug 2016 at 11:35

PSA down slightly to 11.10 on August 1st 2016.

so remaining on active surveillance.

Best regards to everyone.

User
Posted 08 Aug 2016 at 11:44

Hi Tez, good news with the small drop of PSA levels and that you will be staying on AS. Long may it continue, it doesn't stop the worrying every time the test is due so keep strong physically as well as mentally.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 08 Aug 2016 at 12:47

Good to hear from you OT with an update.

If AS suits you then good for you. I hope it continues for a long while

*******

We can't control the winds - but we can adjust our sails
User
Posted 15 Aug 2016 at 11:28

Many thanks.

I am reasonably happy with AS.

If it wasnt for the usual night time visits to the bathroom I would be able to push the cancer much more to the back of my mind.

Take care everyone.

 
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