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My story so far and thoughts

User
Posted 03 September 2015 20:57:36(UTC)
Hello all,
I am 68 and in June my PSA was 9.4 so I opted to have a biopsy.Twelve samples were taken and eleven came back clear,but the twelfth showed 20% cancer.The consultant said my Gleason score was 3+3 and I would be a good candidate for Active Surveillance.I accepted this option.
I am due to have another PSA blood test in about a month and then an MRI scan in another three months.
To be honest I was not expecting to get this diagnosis, so was a bit stunned at first.Now I am somewhat reconciled to it.

Last week I got the "tool kit" so that I could prepare myself in case I get told that I need to have other treatment.
I have read about the various treatment options,and find them daunting.
My thoughts at the moment are that if that day should come,I am not sure I would consider treatment. Not looking forward to incontinence or lack of bowel control.
Does any one else feel this way?
User
Posted 04 September 2015 07:58:53(UTC)

Hello Perkij and welcome

To answer your last question first - Most definitely.

There is much to take in at a time when your head is all over the place.

It is good that you are a candidate for Active Surveillance and believe it or not that makes you one of the lucky ones!

My husband was on it a year before he had to make a decision about treatment but it gave him time to suss out all the treatment options, although he was adamant from the start that he would not have an operation, again, like you, he was concerned about possible incontinence and loss of bowel control. His Gleason was 3+4= 7 so higher than yours.

It is not a given that anyone who has the op will automatically have those problems, likewise it isn't a definite that erectile disfunction will happen.

All of our men are different and even those that have the same treatment will not necessarily have the same side effects so there is no guarantee with any treatment that it will be trouble free.

You have the Toolkit already so are that much ahead of the game.

Take it all a day at a time. Don't rush into a treatment without researching (which you are doing) and asking lots of questions, both on here and of your consultant.
Have somebody with you if you can, when you go to the hospital because there is a lot to take in. A pad and pen are helpful here, also a list of questions to take with you.

You're tempted to do nothing once the day comes where you have to make a choice. Well, it is your choice and only you know how you would cope with treatment and POSSIBLE side effects, but the option of no treatment leads eventually, to only one result if the cancer is very active later. Who is to say that if you reach that stage you wouldn't end up with bladder/bowel problems anyway, even without cancer treatment.

My husband had always said the same as you he would rather be dead than incontinent. That is an immediate, emotive reaction to the unexpected horror of being diagnosed with the disease.

A year on AS gave him time to think things through. He never researched a damned thing but left it all to me. Treatment choice was his but only after I spoon fed him details of everything.

Perhaps because of that year, when the PSA started rising it had seeped into his subconscious just what the future for his family would be like without him so he was more open to treatment ideas

You, at least, appear to be in control of your own life but think of family and friends when it comes to doing nothing.

Good luck. You have a new PC family on here, much as you rather not be a part of it !!

We're here, we listen, we understand everything that is going through your head right now because I doubt there is a single member on here who hasn't felt what you are now feeling,

Best Wishes
Sandra

 

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 04 September 2015 08:29:24(UTC)

I think there are two things Perkij -
1. Active surveillance is not 'doing nothing' and is a proactive choice. Some people talk about 'watchful waiting' which is perhaps more of a 'stick your head in the sand and hope' than AS is
2. For AS to work, it has to be done properly - regular PSA tests combined with at least annual scans and finger up the bottom.

There are some men for whom AS has been a really good decision as they have been able to get on with their lives and find the cancer doesn't ever cause them an issue. For others like Johsan's partner, it bought valuable thinking and 'normal' time so that when the need for action came, they were confident about their next choices.

My father-in-law declined radical treatments because he didn't want to risk becoming impotent but he wasn't put onto a proper AS programme. He had PSA tests but no scans etc. and probably he didn't appreciate the difference between AS and WW

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


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User
Posted 04 September 2015 08:31:42(UTC)

hi

as already said one day at a time, and yep everyone is different a friend of mine diagnosed gleason 9 with no spread, only needed radiotherapy and hormone treatment on yearly

myself gleason 9 spread to my bones hormone treatment only

so as you can see don't go by everything you read

nidge

 

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
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User
Posted 04 September 2015 10:09:00(UTC)

I sometimes think the treatment choices for those in the 'curable' camp sound as difficult and certainly intrusive as being in the incurable group though the end point is sharply contrasting. I did not get to make this choice as I had bone mets from the outset but I have often speculated on what I would do and for me treatment available to extend my life would be a serious option even with side effects. Use your choices wisely!

User
Posted 04 September 2015 18:21:46(UTC)

Hello Perkij,

Yes it is daunting when we're first told of our dilemma and then wonder "what's next" ?

The first biopsy I had after my PSA reading of 10, they found some inconclusive but "iffy" cells. As a result of that they wanted another biopsy and offered a Tenplate Biopsy, which is carried out as day surgery and under anaesthetic. This enabled them to take 46 cores and 4 were found to be positive. It was felt after that I'd be fine on AS.

My next PSA, a few months later went up and as a result they arranged for me to have an MRI. This didn't find anything new but the PSA remained up at 15 and it was felt I should consider either Hormone and Radiotherapy or Removal rather than stay on AS.

By this time I'd had long enough to consider all the information on all the different options and like you initially, feeling daunted. by the time I was faced with my choice, I felt more prepared and ready to make that choice. I chose removal and that operation will take place a week on Tuesday. Of course I'm apprehensive but at the same time I'm ready and  just want it over with, whatever I have to face afterwards because of it.

That's just how I have dealt with it, but as others have pointed out to you, it's different for everyone as are the problems to be dealt with after treatment - whatever it is.

Just take it a step at a time Perkij, and keep in touch with the wonderful people on this site . What Sandra said at the end of her post says it all.

Wishing you all the very best ,

Cobbles

 

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User
Posted 06 January 2016 21:53:15(UTC)
Had my second biopsy on Monday,this time targetted at the areas of concern which showed up on my MRI in November.14 samples this time instead of 12 the first;This time it was not so uncomfortable as the first biopsy. It was done by a different man from the first, and he seemed to be less brutal taking his time and talking to me and the nurse all the time.It was the same nurse both times.She was very caring.
Now have to wait till 20th January for the results. Currently on AS which can be bit wearing but does mean no surgery or other treatment.
Before Pca raised it's ugly head we booked a quite expensive holiday in June for my wife's 65th birthday.
So hopefully the biopsy results will allow that to happen and then I think I will opt for treatment to get rid of it.
Not sure whether to go for surgery or RT,but with luck and a bit of help I will make the right choice.
User
Posted 07 January 2016 06:11:57(UTC)

hi
heres hoping the results are what you need, I dont think the biopsy results will affect your holiday we went to canada after I had mine couldnt get full insurance ie cover the cancer but we had a chat with onco before we made final decision as they said it was not going to cause any issue at this time,
so had a insurnace policy that covered everything but the cancer

regards
nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
Thanked 1 time
User
Posted 07 January 2016 09:07:33(UTC)

Hello Perkij

Glad the latest biopsy was a little more civilised ! It makes such a difference.

As far as the holiday is concerned, well, you've been looking forward to this special one for a while so why spoil it by worrying over it. Go and enjoy it.

We went with Explorer Travel who did cover John's cancer but I think it's because he opted for Brachytherapy so I don't know if they would cover surgery for the same sort of price

We can't control the winds - but we can adjust our sails
Thanked 1 time
 
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