Just diagnosed & a little bewildered...

User

Posted 23 Jul 2015 at 09:59

Morning all

I'm a generally healthy 51yo and I was diagnosed with PCa on the 16th June this year, PSA 5.2, Gleason Score of 6, staging T2c...seen the surgeon who thinks I'm an ideal candidate for Active Surveillance, but I need to see the Oncologist (24th August) and have a flow test before I make any final decision (the flow test is needed as that's why I went to the GP in the first place.

My natural tendency is to bash on with things & get started early, so it's trying my patience waiting for the appointments and I'm leaning towards surgery at the moment as I'm really not sure that I have the mental capacity to take a "wait and see" approach, so it's been a real help to read some other people's journeys.

I'll keep you all updated as things progress

User

Posted 23 Jul 2015 at 13:20

Hi Duncan sorry you have joined us take someone with you on your next appointment and write down questions to ask, you do forget and come away not asking and not remembering , hard choice but do ask any question here as we are all in or have been in your position .all the best Andy

User

Posted 23 Jul 2015 at 13:31

hi duncan

you just need to step back take a big breath, wait for all your options, its the waiting that gets to you it can seem endless.

always take someone with you on your visits.

you will ge lots of support and advice on here

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 23 Jul 2015 at 14:01

Great advice from the above -- ALWAYS take someone with you as Nidge said . Every time . Its so hard to compute all the data on your own . You may or may not have read my story , but no way would I have gone through all I have if I had been offered Active Surveillance . I would definitely have taken my chances . Im very very new on this site , but I just worry so much about how " over-treated " prostate cancer is and that professionals feel bound to offer radical life-changing treatments to patients with any cancer that they find , when sometimes that cancer may not go on to affect that persons life !
Im probably totally wrong , but wait until all the advice and treatment options have been given , and then sit back and think long and hard . Make sure you download and read the entire toolkit off this site as it is invaluable and will ultimately help you in making an advised decision . Very best wishes to you
Chris

User

Posted 23 Jul 2015 at 14:49

Hi Duncan,

Yep, all good advice given so far.....

Difficult I know, but don't panic, and weigh up all the options put to you very carefully.

Unfortunately Active Surveillance was not an option for me as although I was initially diagnosed with a gleason score of 6 ( 3+3 ) and T2b the volume of the disease found to be present indicated that treatment was strongly recommended sooner rather than later. But I would have seriously considered AS if it had been an option...

I chose to have da Vinci surgery as my primary treatment and was made fully aware of all the possible side effects of surgery beforehand.

My subsequent Histology report confirmed that I had made the right choice for me and although I'm still suffering some leakage together with ED ( all improving slowly ) I'm much happier that the offending gland has been removed...

I'm pretty sure that there is little difference ( if any ) in the success rates of any of the radical treatments available at present ...... ie RP, RT, Brachytherapy etc, so you have to be guided by the experts and follow your own preferences.

Good luck with whatever route you decide to take.
Luther

User

Posted 23 Jul 2015 at 15:11

Hello Duncan and welcome from me too.

My husband was 72 at diagnosis with a PSA of 5.7, Gleason 3 + 4 and originally T3a which was subsequently changed to T2.

He was on active surveillance for a whole year before he needed to make a decision regarding treatment.

It was his choice not to rush into anything but that decision doesn't suit everyone.

Research all your options, make a very considered opinion of pros and cons and once you've made a decision don't look back.

My husband was treated last year and has been happy so far with the outcome.

Good luck at the appointment on 24th August. Use the time by studying The "Toolkit" available free of charge from publications. An invaluable tool on which to base questions when you see the oncologist.

Best wishes
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 23 Jul 2015 at 15:33

Thanks all for the welcomes - toolkit ordered yesterday, arrived today....SWMBO will be coming along to all the appointments, and they record the conversations onto a CD so you can replay them when you get home as you do miss things....the good news is that both my brothers have had PSA & DREs and come back clear at this stage....silver linings and all that....

User

Posted 23 Jul 2015 at 19:13

Hi Duncan, like everyone else , welcome to the site and hope you get lots of help and support because you are in the right place to get it.

As far as waiting for appointments goes I have found that being pro-active with all departments and pestering for dates/information is probably better than sitting and chewing your finger nails. If you can ring and speak to the secretaries of specialists/doctors it does(has for me) work and keeps your name somewhere near the top of the pile.

If I had been told that active surveillance was the best route for me I would not be thinking of surgery unless all evidence pointed to it being necessary, and I am sure your doctor has already thought this through but when you next see him or maybe talk to the specialist urology nurses they can give you the reasons why active surveillance is best for you.

Best wishes to you for whichever way you decide to go.

Chris/Woody

Life is seen differently upside down, take another viewpoint

User

Posted 23 Jul 2015 at 20:55

Hi Duncan

As others have said there is plenty of advice and 'experience' on this site.

Have to agree with Luther - consider all the options and then choose yourself. re success rate there is very little difference between surgery, EBR and brachytherapy. However, a surgeon tends to recommend surgery so ask the oncologist about the other options and your suitability for them.

I was 58 when diagnosed and the surgeon consultant recommended surgery. However after a lot of reading etc I opted for brachytherapy. I was diagnosed in September 2014 and had my treatment in May this year. My Gleason was 3+4 and PSA over 16 at the time so there is no need to rush unless the cancer is aggressive or showing signs of spreading from the prostate.

For info I went to the doctor in the first place because of a slow stream when I peed. It turned out this was not due to the cancer but due to a lobe of the prostate pressing onto the urethra near to the bladder. Some consultants say that with such bladder problems you are not suitable for brachy but it turns out that is not the case. They carried out a 'small' op to rectify this problem before I had the brachy (called a mini TURP).

Take good care and keep in touch.

User

Posted 23 Jul 2015 at 21:50

Hi Duncan

Sorry you have needed to join this group but I am sure you will find everyone very helpful on here. I can only repeat what everyone has said so far, don't make any rash decisions, take your time and get as much info as you can regarding your treatment options. I was about the same as you, PSA 5.4, Gleason 3+4, T2. Once diagnosed most men's reaction is "Just cut it out", I know mine was. However after lots of discussions with doctors and fellow sufferers I opted for Brachytherapy in the end and had the procedure back in January. I am back to normal now, although I did suffer some quite nasty side effects for the first couple of months. Once you have all the facts you have to decide which treatment you think you will be able to handle, and the side effects they all have. Probably the hardest decision I have ever had to make in my life so far, lots of sleepless nights going over everything.

Good luck and let us know how things pan out. Take care,

Lyrical

User

Posted 24 Aug 2015 at 15:37

Well, saw the oncologist today, brachytherapy is not an option as I have a restricted flow and my bladder isn't emptying and the treatment would just make that worse...so I'm left with AS (if I can handle the mental challenges and ongoing uncertainty), surgery or EBRT (one ray of light is that I probably wouldn't need HT first) but I'd still need some surgery re the restricted flow etc....

There's no immediate rush to make a decision but, being a typical male, I just want to get on with things...whatever "things" may be....glad the session was recorded so we can listen to it again, I foresee a few sleepless nights before AND after we've made the choice....but hopefully not too much second-guessing...

User

Posted 24 Aug 2015 at 16:22

Duncan, as you will know from reading the conversations on the site, there is no cut and dried answer, no sure fire route to take.

Active surveillance isn't for everyone, it very much depends on how you think you will cope with what is happening unseen inside you.

I wish you well with your choice. Don't rush into one, but having chosen, then stick with it.

Good luck and best wishes to you.
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 24 Aug 2015 at 16:30

Duncan,

You might find this useful...

http://sdm.rightcare.nhs.uk/pda/prostate-cancer/

Flexi

User

Posted 24 Aug 2015 at 16:31

Hi Duncan

It's good you can now move forward on whatever path you choose.

Perhaps to bear in mind: however upbeat the consultant treatment doesn't come with certainty. Is post treatment uncertainty more or less than AS uncertainty is one for you to judge.

Whatever your choice good luck.

Ray

User

Posted 24 Aug 2015 at 17:07

Hi Duncan,

Another bridge crossed early on in your journey ......

At least you now know what options you now have to focus on and consider.

No-one will be able to advise you on which route to take as it's very much down to each individual and how they 'see things'.

I wish you well with whatever choice you make, and once you have made that choice, move forward and don't look back.

Best wishes
Luther

User

Posted 24 Aug 2015 at 18:14

I think this quote from Donald Rumsfeld sums it up quite well......There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don't know. But there are also unknown unknowns. There are things we don't know we don't know.

User

Posted 24 Aug 2015 at 18:37

I like the quote ! A brain teaser
I was going to write a long post , but I don't have that much experience compared to others on here. Having said that I've had all the experience I can take.
Excellent advice from the others on here. If you've fished around enough you will know the options and all the pros and cons. And you still won't be able to make your mind up probably. Sit awhile though Duncan
Best wishes Chris

User

Posted 24 Aug 2015 at 19:03

Hi Duncan

Just wanted to say, whatever you decide to do I wish you well.

User

Posted 24 Aug 2015 at 20:16

Thanks one and all, I do find reading everyone's stories quite upifting in that it reassures me I'm not alone and otters have gone down this road before. The support is just amazing, the toolkit is so helpful as are the quick responses...

We'll keep you in the loop as to what we decide and when....

D&C

Edited by member 24 Aug 2015 at 20:17 | Reason: Not specified

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