Saturday, 28 January 2012

Doctors & Consultants do not always know best - so always question!!

We have been quiet for the last few months as we have had a lot to cope with........... And it is ours to cope with who cares really except us?

But I wrote this on facebook, so I may as well share here?


My husband has a history of early Prostrate cancer in his family, his older brothers have prostrate problems, one has prostrate cancer and their father and other males in their family died of it.

Yet he got a negative reaction here in the UK when he asked to be checked for prostrate cancer just over 2 years ago . He is now just 60, he was then 57. He was told he was worrying about nothing and he was too young to have prostrate cancer?!

His internal examination by his GP was very so brief and showed nothing and Barrys prostrate did not seem to be enlarged to this doctor, but the PSA test was high and this was a GP, not someone who specialises in cancer.
However despite high PSA he was told at his age he would/COULD!! not have it!!

But we knew better and fought and insisted it was investigated further.
He eventually had a biopsy - which is the only way of really knowing!!

It turned out he had stage T2a prostrate cancer - probably not outside the prostrate but would swiftly be if left and of an aggressive nature.

He has now just completed 'Permanent Seed Brachytherapy' - a very up to date and effective radiotherapy that we had to fight to get and Barry had to travel outside Cornwall to get as they do not do it here in Cornwall, UK.

We are waiting to see if he is clear? To know for certain may take some years


But we have had such a fight with our doctors to get this for Barry !!

They wanted to give him a radical prostatectomy!!! Which would 87% leave him with urine incontinence and wearing a catheter for life and almost certainly impotent!!

Many treatments for Prostrate cancer leave men with some impotence but with prostatectomy it is almost certain.
And it is not neccessary except in cases of very advanced cancer and Barry was not at that stage and a prostatectomy is rarely done on someone of Barrys age anyway!!!

So why did they offer him only a prostatectomy and why did we have to fight to get a less radical treatment?
Because he had HIV that is why and those treating him were not up to date with recent research on radiotherapy and those with HIV and referred to a way out of date research , done in the 80s and in America that said men with HIV can not have Radiotherapy of any kind because they do not heal. 

But this research was done in the 80s, before the modern HIV meds and about bowel not prostrate cancer. Up to date research has shown there is no risk now!

The worse thing about this for me was is as soon as they said Barry could not have any form of Radiotherapy due to HIV, I knew 100% they were wrong!!

But I am NOT medically trained and I was so scared I could not prove it. And I had to as Barry said he would rather die than have a prostatectomy and I knew he meant it!!
So I was faced with the daunting task of proving to a team of oncologists and urologists that they were wrong!
And I will not go into the details, but I did prove it, but it was not easy. 
 I even had to find the up to date, peer reviewed research, and even give them a volume number and page number of the medical journal it was published in and supporting information!!
Why as the wife of a patient did I have to do this?? It is not right - thank you NHS!
I support the NHS with all my heart, but in this case they really let us down! Could not these highly trained doctors be able to get over their ignorance about HIV as it is now and read up on latest research??

But I did prove it - Barry did not have to have a prostatectomy -

But even so it has been so hard a journey over the last year or so.

I just can not tell you how hard and I can not go into the full extent of our battles over the last year or so, just to get Barry treated at an early enough stage.......but believe me the doctors certainly thought they knew better than us......and it turned out they did not at all!!! - His consultant even apologised!!!

I of course do not have prostrate cancer but I am sure affected by it !!As I have been Barry's nurse, companion and only support through it all.

Barry was able to have Brachytherapy which is less intrusive than regular radiotherapy and may indeed be cured - we do not know yet we are waiting to find out.
It has affected him in so may ways that I can not go into , but just let me say , the last year has been very difficult to say the least.

And he  is in fact now parcially impotent - as so many men after treatment for Prostrate cancer are.

Brachytherapy is supposed to affect sexual function the least but all do and Barry was not one of the lucky ones.

This may resolve in time however and I hope it does. As we have tried everything now,  Cialis, Viagra and Levitra, etc. And  he can not bring himself to inject his penis and I agree if this is not for him, it is not for us!!!!!!  and as someone with prostate cancer he gets all this free in the UK,

But nothing works. This may seem a small problem, and of course it is not compared to living and surviving prostrate or any cancer but sex is part of a quality of life for us all?

And believe me it is a very big thing for a man , especially a man like Barry who is so full of life and wants to live it and is only 60!! Men can beget children and be potent until their 90s , so to be impotent from 58 is a very big thing!!!

So this will may improve but has not so far and and I will live with this happily but he has more problem with this than I?

Not good for either of us - but it is better to be alive
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