Treatment, no ups just constant downs

Hi Q

Sorry to hear, it does a bit of a mess.

Firstly though, how bad is it , do u have a Gleeson, what does the MRI show, has it spread to lymph or bones?

Giving this info will help u get the best advice.

Steve 

Hi

No mets. All contained in prostate.  Glesson on diagnosis was 6/7 then to justfiy the hormone tablets they told the deciding team it was 8.

They just keep saying " heavy hormone treatment or it spreads".  Its been there for 10 years they estimate.  Growing slowly.

Ok ,so good news that contained and really stats not too bad.

I'm no HT expert , perhaps someone will post who knows more, 

But I would say with those figures that HT for a couple of years would be ok or possibly less.

Strange how they've upped the Gleeson suddenly.

If I was in this situation think I would consider changing hospitals, done thru your GP,  no point in going thru another few years of this if you're not happy.

Best wishes

Steve 

I honestly feel like this is just a delaying/holding tactic to cover up waiting times to treatment.  Its not right that the radiotherapy doenst start until a year after diagnosis, yet if he had surgery it would have been done within weeks of diagnosis.

I also feel there is something in the use of the hormone tablets.  The injections are already a hormone.  What are they getting from using the tablet too?  More time, subs?

Its impossible to not feel like this.

I feel like somethings not right.  However hubby wouldnt even consider challenging this.  He is doing what he is told and they are getting no push back.  I cant go in because i will challenge, but he feels he is getting the right treatment, and almost bows in appreciation.  I feel like its not right.  Its like chucking a bus at an ant.  The hormone tablets, they have said is a  2 years only plan (but sure they can change that up again i mean why not).  Because of the steroids he has to take with it.  The injections though, they appear to be using willy nilly without even considering the long term.

3.5 years on hormones, and growing is excessive, and 1 year after diagnosis to radiotherapy is essentially neglect.  

Because of his lowish stats 3.5 years does seem too much.

Must admit doesn't help if he's happy with all that's going on

But wait and see, there are people on here who have been thru all the hormones and probably be able to guide u thru it and give u some helpful advice 

Steve 

Hello Quitit

i can’t comment on the specifics of the treatment you describe as I am not a prostate cancer medical specialist ( although I am learning fast!) and don’t know what shape the Scottish health service is in .

however, I can really identify with a lot of what you say!  I have several times thought that if the doctors told my husband that chopping a leg off would cure a headache he would agree to them doing it! My husband seems to treat these doctors as gods who know everything and must be obeyed. Like you, I want to question and challenge what they say at times. 
we have been on this journey for exactly one year. We have been told that the hormone therapy will be for : 2-3 years, 6 months, 18 months. The latest was that it will be reviewed in October as whether to continue!

I am finding it very hard to live with all of the side effects of the HT plus the other health problems my husband has. But, I know that he is finding it hard , too! The big problem for me is that I realise that my role has switched from wife to carer. I feel that I am always having to ‘watch out’ for him. On the other hand, I know it could be worse. I also know that if I had health problems he would ‘watch out’ for me. It’s what we both signed up for - ‘in sickness and in health’. The problem is that when you are young, fit and healthy , the ‘sickness’ part of this seems so very irrelevant! '

so, there seems a constant tussle between what I know I should be thinking and doing and what I am actually experiencing and feeling. 

I really hope I have not upset all the lovely people who post here by being so brutally honest about how the pc diagnosis and treatment affects us wives. No doubt us wives have health ( cancer) problems that affect our menfolk, too.

for what it is worth, I would suggest that you write a letter of complaint to your hospital trust, perhaps copying you MP and local health care bosses, detailing all the problems you are having in accessing timely and appropriate care for your husband - care that your husband has pad for in advance in the taxes he has paid during his working life.

I hope it helps knowing that you are not the only wife that faces these struggles x

That's disappointing about the delay to start. I do think you need to go in and challenge some of these things, is there not another hospital you could be referred to for the radiotherapy, pretty sure its got a target for treatment or they have to do something else. We are constantly told we are clients, not patients, he should be in control. I'm also confused about tablets or injections. With mine, i was given tablets to stop it immediately, which yours has shown by the lower PSA and testosterone numbers, as soon as I had the first implant, (4 weeks later), I stopped the tablets. Its ne of the other i think.

I've also said before, quality of life is all part of this. I hate the side effects of the hormones, I've voiced that to my consultant and whilst the initial treatment is listed as 3 years on hormones, she said if its affecting me or my quality of life too much i can stop at 2 years. I intend to stop at that 2 year mark and she will do regular tests to see how its all going. He is in control, they offer treatment advice, not compulsory, although it takes strength to voice those concerns and with the diagnosis ringing in his ears, i can see why he's agreeing to everything. Its very hard.

So make a plan, tell him you want to go in as you are concerned for him, write down in a notebook all your concerns and questions, be nice, see what they say. Take control......even the NHS say he should have support when attending.

Hi

Hes getting injections every three months and ontop of that hes on ababiraterone and steroids which he takes in tablet form every day.  Thats a double whack of hormones.  Hes now obvs getting all the symptoms.  Tears, misery, bowel problems, hot sweats, lack of concentration.  Not to mention the ED issues.  The problem is, accepting this for 2 years, then to have that streteched out every time he goes in.  Now were at 3.5 years and counting.  Radiotherapy, ok, it is what is is.  Waiting, again could almost accept (NHS and all) but throwing hormones at him, and watching this is too much, its just too much.

I just cant get my head around it. Its not normal.  Its not, especially for his status, he was 6/7 now 8.  There are no mets.

And as i have struggled with this all along i am blown away by the "tough luck" approach and them telling him if he doesnt do what they say he will simply die.  Scare him into not being able to rationalise this, seems a standard approach.  I am so mad, so very mad.

They certainly shouldn't be saying that to him, if he doesn't do what they say he will die.

I would have run away by now