Help

From one worried wife to another! I expect by now you have some idea about treatment options ( look at www.prostatecanceruk.org if not). What I eventually did was, in advance of any appointment, was to compile a list of questions and print them out to take with us to the appointments. I used to print 3 copies - 1 for me, 1 for husband and 1 for consultant!!!!

Like yourselves, my husband left me to do the talking and questioning! This used to worry me as it felt like I was taking over HIS consultation. But, at the time, he was refusing to engage with the diagnosis - he was in a state of silent shock. (Somebody has to be the ‘gobby one’!!!  )

Although he was not engaging verbally, he was actually taking in the info and did eventually make his own decisions. I supported all of them except the one the night before RT planning when the thought of the enema made him say he was not going to go through with any more treatment! As the oncologist said, this was his only chance of a cure! I was not prepared to let him deny himself that chance just because of a few micro enemas!!!!!.

I hope all goes well tomorrow! We actually received more support and info from the specialist nurse team than we ever did from the doctors! They literally were our life savers at the time! 
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Hi Johnam.

Good morning and welcome to the prostate cancer family sorry that we have met under these circumstances but it's still great anyway.

I was diagnosed with prostate cancer last June 2023 with a PSA off 1000+. At my first appointment I was put on Hormone Therapy which has now brought my PSA down to 0.9.

My main suggestion would be to take a pen and note pad with you so that you can make notes to read back on afterwards.

The specialist nurse & consultant were quite down beat to start with but as the HT started to bring my PSA down this soon changed.

Please please don't worry you will soon receive more help and advice from other members but if there's anything else that I can help/support you with please come back to me.

Prostate Worrier.

Good Morning johnam 

Don't panic - take a pen and paper - some staff will let you record the meeting so there's that to consider.

Below is a link to our formal advice - this should help.

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/questions-to-ask-your-healthcare-team

List your questions - possible answers - and possible further questions. If you know in which direction you want the meeting to go - ask if that treatment is right for you.

At the end of the meeting ask for a full copy of the notes. If you live in England it's a great idea to have the NHS app too with FULL access to your medical records (you need to ask your GP for this).

I hope this helps - if you need anything else, give me a shout.

Best wishes - Brian.

That’s good to hear as I wasn’t impressed when the female phone and told my husband he had cancer andbefore that was a mixup with appts I asked why he had to wait as he was fast tracked . She said if it’s slow growing he has plenty time . I said at that point what if it’s fast growing she just blabbed out at an already too late . So she didn’t give us any good vibes . I will let you know after we have our visit tomorrow what the outcome is . X ps we are getting the male nurse 

Thanks Brian 

Hi Johnam,

What I learnt in the last 7 months is that when you meet the team they already have an idea of a treatment path for you. If you will offer options and alternatives come back here and the good people of this site will help you with their experiences and knowledge. In our case the treatment plan was already in cast due to PC not being curable. If PC is curable you will have 4 major choices  which are HT, surgery or internal radiotherapy, external RT  or a mix of the 4. Or just AS. 

What I feel I know now is that the beginning of the journey is some decision to make if you are lucky to be curable. Come back here with the options and you will get lots of knowledge and help.

If you feel you miss something in the meeting ask if you can have  their telephone help line. In the first few weeks I called the specialist nurses few times a week.

You are stronger than you think! Come back and update us.

Good luck and lots of love

Dafna

Hi Dafna, I sure will be asking for help on this forum ad they are all a fountain of knowledge . Thank you all for your support as we are dreading tomorrow . He’s outside painting the fences tk keep busy xx

Hi Brian , I’ve just done my list of questions and there are a lot . If I don’t get answers tomorrow I will ask on this forum as you are all a bundle of knowledge and I am thankful that I have found you all . We are in Scotland and already asked our GP  for the information she already has and we got it no problem x

That's great - I wish you all the best tomorrow.

The support on here is amazing and I feel the Community Members are like an extended part of my family. We all have that bond that holds us together - Prostate Cancer - and we are all happy to help.

Best wishes - Brian.