Hello from a difficult patient

Hi Paul,

you certainly will be given leaflets and some information, however we felt it was misplaced information kinda half truths . But when you delve into the reams of literature it becomes a minefield. Some of it is frightening and makes you take a step back. 

we had the misfortune of having a meeting with a “nurse” specialist in the first instance who spouted the biggest lot of ….  and we believed every single word. We were so wrong so it’s been a struggle to gain trust. 

so if someone can come up with a layman’s  A to Z it would be amazing . 

best wishes

Liz & OH X

Interesting and I’m not at all surprised.

My best buddy has been on at me to lose the carbs and lose the chance, believing the evidence in America mostly that considers the carb the poison not the rogue cells.

Again, I’m not surprised.

My point is that we take the treatment we consider the best at the time depending on your beliefs, and the beliefs of those around you.

Good luck

Hi guys. What decision did you make in your case?

My husband wasn’t given a voice .it was  HT/RT.  When we challenged it . He was told pretty bluntly either take this treatment or die . 

 We eventually met with an oncologist and he explained a bit more but didn’t feel very comfortable as he too said at our first meeting “ put those questions away, I will give you all the details “ .

However, we have a fantastic councillor at the Maggie Centre and she was amazing explaining everything fully in language we understood.  She also told us to challenge him . We did and what a difference , we now trust our oncologist 

felt very let down on our initial journey  but the HT is keeping it at bay as he is classed as palliative . 

Wow that experience sounds very familiar. I challenged my oncologist but he was supported by all his colleagues. I chose to ignore them and eventually found a supportive oncologist a year later. The system is broken. 

Hi PaulSw 

I’ve believed for sometime that it’s not necessarily a good thing to rush into surgery and that the concept of going under the knife immediately, without investigating other options could be a mistake for some. I also believe there is a place for AS if your stats are low. If you can be monitored. But, unfortunately, (if I can slip into the politics a bit,) our health care system, NHS is not set up like private healthcare and unable to cater for the individual so easily as it has to work for the masses. It can be hard enough to be heard and get an initial appointment sometimes, without then deciding to work against statistics, the system and refuse treatment. I am all for being your own advocate with the treatment you want to have and changing consultants, even hospitals if you feel strongly that you are not having the right treatment, but you need to understand the system you are in and it’s not always an easy thing to do, to be your own advocate in a system like this . 
I’ve just had a look at your book cover and it’ looks like it’s discussing the initial diagnosis, being heard and having all information and choices made available to you? Do you go into all the options available rather than surgery, as there are many or is it about refusing to have treatment and opting for AS as that could be a very dangerous concept to push onto people. Especially at a time when they are at their most vulnerable. For me it would need to cover all choices out there to be fully informative, but also covering the option of AS and being able to wait and why. You need to be monitored effectively with regular bloods and PSA and that needs to be covered.  Can I ask if your own healthcare is coming from dealing with the NHS or private healthcare? . Best wishes L

Can you tell me what you changed in your diet.  

Not sure that I would advise for self experimentation with drugs that are not meant for PC. Now and again we get people willing to fill up with animal drugs, cow wormers in the belief that any drug that would expel parasites is a good option for expelling cancer, bit crazy. It’s a known fact that eating well, a clean diet of trying to head towards plant based or low red meat, no processed foods. Leave out sugars, alcohol  if you can, is the way to go and exercise is key to supporting your body. 
Do you have any good tips on what’s a good diet to share. 
L

 All very relevant points. I made the call to go private to have more control. 

Hello PaulSw 

I firmly believe in taking advice from the medical profession. Whilst you may be well on AS I know two people who have gone from AS direct to Stage 4 and and sadly one is no longer with us, and yes Prostate Cancer is on the Death Certificate as the cause.

I would advise all Community members you need to maintain a healthy diet and take advice from your team if you are thinking of taking ANY supplements.

Best wishes - Brian.