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User
Posted 21 Feb 2016 at 16:09
Hi all
My name is Brian and I am aged 62.
I had a UTI last November following months of urinary issues which I rather stupidly chose to ignore. I was diagnosed with a large prostate and advised to wait 6 weeks and have a PSA test. The reading came back at 9.3 and was referred by my GP to the experts . They repeated the PSA within 2 weeks of the first test and the reading had risen to 11.24. Although I take Tamsulosin and have a reasonable flow rate I have failed the residual bit of the flow test miserably on 3 occasions.
Biopsies were taken in early February and a week later I was given the news of early prostate cancer Gleason 6 3+3. In view of the PSA level I had an MRI scan last week and should have the results by the time I see the Cancer Specialist on 1st March. Anxious times ahead! Following my appointment I should be a candidate for Active Surveillance, although I know they are concerned about my urinary retention issues even after hanging around double and sometimes tripple voiding!
Thanks for reading my post any guidance would be appreciated.
User
Posted 21 Feb 2016 at 22:06
Thank you all for your kindness and advice. I have already spoken to the lovely Laura, one of the Prostate Cancer specialist nurses and reqested the Toolkit. I have details on all of the treatments available and have been busily making notes so that I can discuss all of my concerns including those relating to Active Surveillance with the Consultant on 1st March.
Many thanks once again.
Brian.
User
Posted 22 Feb 2016 at 08:38

Hello Brian and welcome from me too.

All good advice from the others and you've obviously got yourself organised with the toolkit and the nurses.

It is fortunate that it appears a lot of options will be open to you, hopefully confirmed by the MRI results.

My John was on Active Surveillance for a year before he had to make a choice due to rising PSA. He was more than happy to be on it since it gave us time to assimilate all the information regarding treatments.

He too was told (following treatment) that he was retaining a bit so they suggested a camera to check what was happening, with the option of stretching the urethra to allow more flow. It was even suggested by the consultant that if it was mild restriction the action of putting the camera up may do the job. It appeared that it did.

Good luck with the results

We can't control the winds - but we can adjust our sails
User
Posted 22 Feb 2016 at 19:02

Hello Brian,

Welcome from me too.
I was dx'd with 33.5 T3A and like Chris had 37 RT sessions. Just wait until you have all the info ( as Barry mentions above.)

I wish you all the best regarding whatever happens with you for PCa.
You know that we're here to help if you need us.

John

User
Posted 01 Mar 2016 at 19:28
Thats really good news

Regards
Nidge
run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 01 Mar 2016 at 19:34

Hi Brian, at least you know now and can forge ahead with AS in the knowledge that if it does flare up you are on the radar now and treatment can start at any time if you want it to.

At least the PCa is confined to the capsule, as is mine, and it is easier on the mind knowing that. That is not me belittling the fact that you have a cancer inside of you but just stating that fact that there is no spread and it is more fortunate.

Here's to regular testing and a long life.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 01 Mar 2016 at 20:25

Great news Brian I'm very pleased for you all.

Good luck with your future PSA results and biopsies.

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Mar 2016 at 20:46
Good news for you. I hope it all goes well.

John
User
Posted 20 Apr 2016 at 20:29
Hi Brian
Hope the result is good for you - fingers crossed.

Kind regards,

Kevan
User
Posted 29 Apr 2016 at 19:47
Very pleased to hear the result of your PSA test and I am sure it is a relief for you. Sorry that you are still having problems with retention and hope that they are able to resolve it for you.
You sound as though you are taking things in your stride which I think helps a lot.
All the best.

Kevan
User
Posted 24 Sep 2016 at 21:31

Hi Chris.

My urine flow with the help of Tamsulosin is pretty good. It is the inability to empty the bladder that has been the main problem and the need to pee frequently! I can only hope the surgery will resolve this and more importantly of course remove the cancer. Everything will be crossed also that I do not have serious incontinence issues following the operation.

Thanks. Brian.

User
Posted 25 Sep 2016 at 02:52

Brian,

I often find that having had a pee, I very shortly afterwards need to pass a little urine again. In my case this is caused by a bladder diverticulum where a little pouch is formed in the bladder so that all urine is not expelled. This is something that can become more common with passing years. It was picked up from an MRI scan I had in 2008 when I had RT. It seems something is only likely to be done about it in the UK if it becomes a real problem such as leading to infections.

Barry
User
Posted 09 Oct 2016 at 22:09

Hope everything goes well for tomorrow, you will be in safe hands

Viv

The only time you should look back is to see how far you have come
User
Posted 12 Oct 2016 at 08:26
B

Good to hear all went well. I have been catheterised for over one hundred days in about eight periods,it would take alot of effort to accidentally pull it out. I have caught them a couple of times and it does get your attention. Keep it clean and use something like instilagel to lubricate where the catheter enters the penis if you get sore. I was told to use non perfumed soap /gel when washing around the end. By passing where urine and blood comes out between the catheter and the urethra is quite common and can be quite uncomfortable, but mine only lasted a few seconds to a minute or so. When showering I would remove the bag straps and tuck the tap under the leg strap, when I dried off I would put a dry leg strap on and leave the wet one to dry for the next shower.

I found standing against a wall or the kitchen units helped when coughing or sneezing.


Enjoy the next few nights not having to get up to the loo. Some guys on here have been dry right from day one of catheter removal, I was almost dry after four days after my op. Rather than use a waterproof bed sheet I put a pad inside some snug breifs and then wore a pair of tenna4 pants over the top, l reused the tenna4 again unless I had leaked.


As I said before take it easy but keep active a few steps around the garden and listen to your body.


I look forward to hearing how well the trial has worked.

Thanks Chris
User
Posted 12 Oct 2016 at 08:33
Well done Brian.

Now take it easy and let your body recover.

Gentle walks and the lifting of a full kettle of water is the extent of the exercises you should be doing for a week or two!

Take care

KRO...
User
Posted 12 Oct 2016 at 14:11
B

I cannot say I noticed a swollen belly post op and I never had any problems with the gas. I had lost about 20 pounds before the op and now put it all back on and also look 34 weeks pregnant.

Thanks Chris
User
Posted 12 Oct 2016 at 16:25

Thanks for your story Oxonian.

My initial history is similar to yours.

I have not decided to have the op yet.

Good luck with everything.

Show Most Thanked Posts
User
Posted 21 Feb 2016 at 19:53

Hi Brian, welcome to the site and sorry that you have to be here but now that you are I am sure you will get a whole host of good advice and help throughout your postings.

I am 66 and was diagnosed Feb last year with aggressive cancer, confined to the prostate, PSA63 and Gleason score of 4+3=7.
My treatment was hormone therapy followed by 37 sessions of radio therapy (shortened version, see profile for,long one).

The good news is that my PSA level is now 0.01 and officially undetectable, much to my relief.

Your treatment path will depend on the results of the MRI and, if necessary, a bone scan and yes it is a worrying time for you while waiting to hear what where and how they can treat you but if you read up on information that is available on this site by downloading the "toolkit" or phoning the number on PCUK site to get one sent to you.

One suggestion for when you see your specialist is to take someone with you so that details mentioned are better remembered.
It is also wise to take a notebook with you to write down some of those details as well as jottinG down questions that you want answers to.

If you feel the need to speak to someone then call the specialist nurse on this site as they are very helpful and will be able to explain anything that worries you or are unsure of.

There are lots of others on this site with the knowledge gained by either having PCa or being the other halves(OH's) and there is no subject that is taboo so ask away and your questions will be answered.

Best wishes with your results, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 21 Feb 2016 at 20:03

I think the good news Brian is that it has been caught early and it is likely that all treatment options will be on the table. I wish you all the best.

pete

User
Posted 21 Feb 2016 at 20:04

Hello Brian and welcome to the forum though sorry for the reason that brings you here.

I see that you have had an MRI scan for which results are awaited. This can help with a staging which aids establishing whether the cancer is contained within the Prostate, is in the process of breaking out or has spread outside of it. You may also be asked to have a bone scan. When all the tests and scans have been done you will be given a diagnosis and be in a better position to know where you stand and what your options are. Active Surveillance is pretty straight forward if this is decided on and means you are monitored. However, even if you do decide on AS, it is a good idea to research treatments and the pros and cons so you know about these should at some stage you need radical treatment. A good place to start is by getting the 'Toolkit' available through the main part of this charity.

Barry
User
Posted 21 Feb 2016 at 22:06
Thank you all for your kindness and advice. I have already spoken to the lovely Laura, one of the Prostate Cancer specialist nurses and reqested the Toolkit. I have details on all of the treatments available and have been busily making notes so that I can discuss all of my concerns including those relating to Active Surveillance with the Consultant on 1st March.
Many thanks once again.
Brian.
User
Posted 22 Feb 2016 at 08:38

Hello Brian and welcome from me too.

All good advice from the others and you've obviously got yourself organised with the toolkit and the nurses.

It is fortunate that it appears a lot of options will be open to you, hopefully confirmed by the MRI results.

My John was on Active Surveillance for a year before he had to make a choice due to rising PSA. He was more than happy to be on it since it gave us time to assimilate all the information regarding treatments.

He too was told (following treatment) that he was retaining a bit so they suggested a camera to check what was happening, with the option of stretching the urethra to allow more flow. It was even suggested by the consultant that if it was mild restriction the action of putting the camera up may do the job. It appeared that it did.

Good luck with the results

We can't control the winds - but we can adjust our sails
User
Posted 22 Feb 2016 at 19:02

Hello Brian,

Welcome from me too.
I was dx'd with 33.5 T3A and like Chris had 37 RT sessions. Just wait until you have all the info ( as Barry mentions above.)

I wish you all the best regarding whatever happens with you for PCa.
You know that we're here to help if you need us.

John

User
Posted 01 Mar 2016 at 17:41
Hi just an update for you all.
An MRI scan has confirmed that my cancer is contained with the prostate. The Specialist has said that at the moment there is no rush to start radical treatment and I have agreed to go on Active Surveillance. PSA tests every 3 months and further biopsies after 12 months. If my PSA continues to rise I will offered treatment to remove the cancer. They are also considering further tests to treat some urinary retention issues that I have.
Once again thanks for the kind messages of support and good luck to everyone using this site.
Brian.
User
Posted 01 Mar 2016 at 19:28
Thats really good news

Regards
Nidge
run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 01 Mar 2016 at 19:34

Hi Brian, at least you know now and can forge ahead with AS in the knowledge that if it does flare up you are on the radar now and treatment can start at any time if you want it to.

At least the PCa is confined to the capsule, as is mine, and it is easier on the mind knowing that. That is not me belittling the fact that you have a cancer inside of you but just stating that fact that there is no spread and it is more fortunate.

Here's to regular testing and a long life.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 01 Mar 2016 at 20:25

Great news Brian I'm very pleased for you all.

Good luck with your future PSA results and biopsies.

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Mar 2016 at 20:46
Good news for you. I hope it all goes well.

John
User
Posted 20 Apr 2016 at 20:23

Just a quick update for you all. I go for the first of my 3 monthly PSA tests on Monday 25th April. I have an appointment to see the Urologist the following day to discuss retention issues. Will let you know how I get on. In the meantime good luck to everyone using this site.

Brian.

User
Posted 20 Apr 2016 at 20:29
Hi Brian
Hope the result is good for you - fingers crossed.

Kind regards,

Kevan
User
Posted 29 Apr 2016 at 08:22

Hello everyone. Just had the result of my PSA test. The levels have fallen from 11.2 when diagnosed to 8.5 so I am able to stick with A.S. Currently awaiting urodynamics test which should determine the cause of bladder retention. Told by the urologist that this is due either to my prostate enlargement or to use her terms I now have a bladder with no oomph!
May need a TURP or if the pressure test reveals no oomph it could mean self catheterisation! Oh, the delights of living with old plumbing!

All the very best to everyone.

Brian.

User
Posted 29 Apr 2016 at 19:31

Good for you. That is great to have AS of your PCa. Hope they can solve the retention!

User
Posted 29 Apr 2016 at 19:47
Very pleased to hear the result of your PSA test and I am sure it is a relief for you. Sorry that you are still having problems with retention and hope that they are able to resolve it for you.
You sound as though you are taking things in your stride which I think helps a lot.
All the best.

Kevan
User
Posted 14 Jul 2016 at 14:46
Quite a lot has happened since my last post at the end of April. Due for the need for surgery to resolve my retention issues I was referred back to the Multi Disciplinary Team to review my options to also treat my cancer. To cut a long story short I was advised to have a radical prostatectomy. Rather than putting up with my existing symptoms that are likely to get worse with a growing prostate and whilst I am fit and age on my side I have agreed to this. The operation will be Robot assisted and is likely to take place in early October.
The reason for the delay is due to the fact that I have volunteered to take part in a clinical trial. The purpose of the trial is to find a new treatment for early stage prostate cancer in the form of a vaccine. It is called VANCE01 and is currently being conducted in Oxford and Sheffield. I have joined a group on the trial that receives 3 vaccinations given at four weekly intervals. The operation to remove the prostate takes place four weeks after the final vaccination. After which the cancer tissues will examined to see what effect the vaccines have had. I received the first vaccination on 12 July and will keep you informed of how it goes.
In the meantime good luck to everyone.

Brian.
User
Posted 14 Jul 2016 at 15:39

Thanks for the update Brian.

I'm sure a lot of us will be interested in the result of the trial


********

We can't control the winds - but we can adjust our sails
User
Posted 14 Jul 2016 at 17:43
B

I have frequently heard that a vaccine for prostate cancer is five years away, good to hear that trials are actually happening. Hope all goes well and I am sure we all look forward to hearing your news.

Thanks Chris
 
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