HI all.

Hello Able and welcome! You have come to the right place if you want to contact people affected by prostate cancer!

im sorry to hear you have received this diagnosis and that initial shock really hits home hard. 

my husband was diagnosed a year ago. He started hormone therapy in November, followed by radiotherapy in Feb and March this year. The ht continues.

we found the passage through urology and the diagnostics the worst part of this journey. The whole process was like wading through treacle! Once we were passed on to oncology we experienced the very best of the NHS

what I did was keep a diary. Every time we had any contact with anybody , I took their name and contact details and noted the main points of the conversation. This proved really useful because as time went on we were at risk of muddling who said what and when!

my best advice is to do your own research! Knowledge is power! It gave us a sense of control and the ability to ask the right questions at appointments. Most importantly, it gave my husband the knowledge to make the choice of treatment that felt right for him. www.prostatecanceruk.org provides some extremely informative information files.   

I am really sorry that your wife has dementia. There are a lot of us wives here who are actively rooting for and supporting our husbands on this journey. In our area, we do have a contact who has prostate cancer and is a carer  for his wife who has dementia. His big worry has been who would look after his wife while he was having and recovering from surgery or who would supervise his wife in the hospital while he was in the room having the radiotherapy etc..

I wish you all the very best and I’m sure you will get a lot of replies from the men here who can pass on their hints and tips and information etc.,

Hello Able

Welcome to the club - I know you didn't want to join!

The choice between surgery and Hormone Therapy & Radiology is a very personal choice and both treatments have their ups and downs. My advice to you is read as many Community Member's personal cancer journeys as you can - for example I went down the HT/RT route and you can read my journey by clicking on the icon of the beach.

Ask an Information and Support Adviser they will be able to give you advice regarding any addition help you may well need in supporting your wife whilst you undergo your own treatment.

I do hope this helps but please feel free to come back with any questions you may have  - however trivial they may be.

Kind Regards - Brian.

Thanks very much Worriedwife for the welcome, feedback and advice.

Daughter (30+) has been keeping notes for me and coming with me to take notes at some of the appointments and has been there as taxi-cab and recovery nurse etc (like after the biopsy).. We are very lucky to have such a loving and caring daughter and she also stepped up and looked after her half sister when she got bowel cancer and died (aged 39) a few years ago.

She made copious notes at that time and they were praised by anyone who saw them who wanted to make sure all that could have been done, had been done and the tight way etc.

And it's not like she doesn't have her own problems ...

She came with me to have a f2f with my local urology team today and I think I should have had that before seeing urology at UCH?  Either way, we gained a better insight to some of the background and my Gleeson (Is it?) of 4+4 putting me in the 'High risk' cohort but with a PSA of 4.9, hopefully caught early (no PC symptoms etc).

I think we concluded from todays chat that given my G=8 and circumstances as a carer, surgery might be the best (of two equal) choices and also better allows the option of RT later on, should it be required.

I will have to wait till I've spoken to radiology though before I can really start to weigh up the options.

As an engineering / science type person, I think I'd like to see a facts matrix, maybe some form of chart or Venn diagram that considers all the factors, including the stats on the post procedure impact / recovery / risk etc.

One thing I'm not good at / happy with is making a decision without it being based on some level of reason or tangible fact (allowing for us being biological and not machines etc). ;-)

My Dad used to say 'Gambling is a mugs game' so maybe that's why I find tossing a coin on such important things very difficult.

Hi Brian / Millibob and thanks for the welcome to the unfortunate club. ;-)

Re reading up here, do you have any feeling how many people who had 'good' outcomes post here compared with those for whom it may not have worked out as well? I was thinking that you can often get a biased POV when the happy people say nothing?

As mentioned upthread, I think I'd also like to read the real stats of what the impact / after effects of people were and I believe there may be such things as a general / national average. available online?

If I do go for surgery and at UCH I think the stats could be better as I understand it's a highly rated hospital, especially for it's PC work.

Hi Able

In answer to your question how many post here with good outcomes, well quite a few I think, some drift away and some come and post every now and then, who can blame them after going thru this , some just want to forget about it all/

I have posted here for about 4 years starting some time after my treatment finished , strange I know.

Suppose you never know when it might come back so keeping in touch with everything can help in the future.

As others have said do much research , consider any side effects that u really don't want and then consider the alternative treatments. The good thing about PC is there are many treatments available

best wishes

Steve

This NHS app may help you with some of the stats you are looking for. I discovered it when my hubby was considering his options. 

He had his surgery in June and you can read about his journey on my profile.

Hi Able

The honest answer is - I have no idea. I can only suggest you read as much as you can and look at people's personal journeys.

We are all different - I am happy with my HT/RT (I wasn't given a choice for surgery but would not have gone there - personal choice) but if you read the story from GR1 her husband is happy with his surgery.(See above).

Read as much as you can - ask questions - however trivial and research - sorry but at the end it's down to personal choice if you have the options.

Best wishes - Brian.

Thanks GR1,

I'll give it a go later.

I read your hubby's journey, thanks for that.

Hi Steve

Couldn't agree more.

We are only as 'cured' as our last PSA test -  I feel a little tense coming up to the next one, and think it will be a long time before I stop looking over my shoulder.

Regards

Stuart

Hi Brian

How interesting.

Like you I had no choice so just went with the flow, letting the hospital make the decision. That said, my initial reaction was " get this out of me". Now I'm 4 years post diagnosis, and I have read a whole lot more, I wouldn't have gone down the surgery route, had it been an option, either - again for personal reasons. I agree though, we all view things differently, and there are others who are and will be more than happy with the surgical route.

The tricky bit is making a decision if options are offered.

Regards

Stuart