Hello Im new here .. looking for support as a carer for my dad.

There are many things I can help you with but firstly I applaud you taking the time to reach out. You are not alone.

The PSA must be scary but my PSA was exactly the same two months ago, yes 715. It’s the highest I’ve ever been in three years and now is plummeting thankfully. The PSA is a number and suggests activity but the number can be in the thousands. The simple and only thing to look at is the direction of the trend. So after three blood tests you will know if the trend is up or down. The last three I’ve had are down so what ever the number is now I’m reassured by the fact that it’s less activity so I’m more happy.

I’ve had metastasis in my bones for three years now and the hormone therapy HT initially was my saviour. I’m still on HT and will be forever.

You say he has terminal cancer and I used to say that in the early days when I was less able to get my head around the situation I was in. I actually have incurable cancer that is being treated. I’m not on a curative pathway I’m having treatments that hold back my cancer.

So I’d say that you really need to allow yourself time to acclimatise to this new Dad. Yes he’s different to the Old Dad, but little has changed but all this prostate stuff, the cancer, the incurable cancer. Let yourself breathe and focus on treatments not get stuck on death. We all are going to die, including you, but I sincerely hope it’s a long way off for all of us.

We all feel the pain you going through, and at times when we feel ok we suddenly have an urge to cry, so just cry when you have to and know it’s allowed.

Lastly, the question you want answered is the million dollar question about how long. When you ask it you will be met with an average. Your Dad is not average. I’m not average. Just remember to be positive. You are not average, you’re a daughter who loves your Dad so much you will do anything to keep him well.

so be positive when you can and remember we are here to support you in every way we can. 

Hello SupportformyDadb4d44c 

A warm welcome to the Macmillan online prostate Community, although I am so sorry to find you joining us. Although dad's cancer has spread from his prostate and is not curable - it's treatable and that's what his team will be doing.

Different NHS Trusts use different methods and drug combinations so to help us help you can you please add some further details to dad's profile. His Gleason Score, his TNM score and what Hormone Injection he is on. You can add these to his profile by clicking on the chair on the home page, then "profile" then "edit" (don't forget to save it once you have written something). You can read my profile by clicking on my user name.

There is a great newish treatment for cancer that has left the prostate called "Triplet Therapy" which uses a combination of Hormone and Radiotherapy along with Chemotherapy, but to work it need to be started within 3 months of the diagnosis.

If you are dad's carer you may also wish to join this group (just click on the link I have provided);

Carers only forum 

For additional support for both you and dad - do you have a "Maggie's" near you - this is a cancer charity where you can drop in for a brew and support - link here - "Maggie's". There's also our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) for support for you and dad.

Feel free to ask any questions, however trivial, you will get answers.

Best wishes - Brian.

Mr U 

Firstly thank you so much for reaching out to me. So grateful  

Im inspired by your positive attitude and your journey has given me hope. Really pleased to hear that your PSA has reduced, that’s got to be a massive relief to you.

Unfortunately my dad was diagnosed with Alzheimer’s in Dementia in 2023.

He was still working 3 years ago. He’s currently 75 years old.

I have PoA and I have decided it’s not in my dad’s best interest ,that he is told of the cancer diagnosis.

He’s s not got the capacity to retain this dreadful diagnosis. Not for one second do I want to cause upset to my dad. 

I did ask, how long I have got left with my dad and the consultants answer was” how long is a piece of string, all she could say was it’s terminal. I’m trying my best to keep myself together for my dad’s sake.

I’m currently taking some time off work to get my head around things and I support my dad daily 

Thank you, again. Your really are an inspiration 

hi .my name is dale age 59 and I was diagnosed in January 25 with metastasis postrate cancer.since then I have had the tripple therapy and I'm currently on hormone injection and daily tablets.  at present the cancer spots aren't causing me any real issues but the treatment gives me hot flushes/sweats and aching joints and leg muscle aches. all of which are bearable.  if you read my bio you may get some idea of what to expect.  im a little over do to update my bio though.  hope this helps. best wishes 

Hi, just a quick response but my husband's initial psa was 1200, then after a couple of months or so of hormone treatment it began to drop considerably to a more acceptable level. He also has multiple sites in his bones too, but despite lots of other health issues, he is still with us five years later.

Not sure who it was that said it was terminal and don't know the age of your dad, but that word is rather emotive. We prefer to say treatable, albeit not curable. New treatments appear to be available all the time and with good results. Don't be heartbroken, just support him and if possible attend all appointments with him so you can be as informed as he is. Often patients attending consultations after initially understanding, begin to hear blah, blah, blah so if you can be there, you can explain things to him that he may have missed. I have attended all my husband's appointments and he often comes out and asks what was said. I sometimes think he would be better sitting in the corner playing with the toys whilst I chatted witht he consultant!!!

Best regards

Gina

Hi SupportformyDadb4d44c , you sound like a brilliant daughter and well done for looking after your dad so well.  Alzheimer’s and PCa are both horrible and to get both is so tricky for you, but I think you have done the right thing not explaining it to him.  HT does usually cause fatigue or brain fog, so for someone  with Alzheimer’s it must make it even more confusing.  My personal view is that the PCa with HT treatment will bring down the PSA and then just sit in the background holding off any further spread for many years. Please feel free to come back with any questions.  Look after yourself.

Hello, Brian

Thank you for reaching out 

I have been told there isn’t any treatment available, other than the Hormone therapy. 

Unfortunately I don’t have the answers to the above due to only having the formal diagnosis late yesterday. 

I am awaiting a letter to follow 

i do however have a call with Macmillan from urology, scheduled in for tomorrow. I will put it on my list of questions to ask

Thanks again, Clare 

My Husband has was diagnosed with prostate that has metastazied to his spine and pelvis, he was prescribed Abaraterone and steriods , unfortunately it has stopped working and they then prescribed Docetaxel chemo.

He had 1 treatment 5 weeks ago , but we have been advised that he have no more as it affected his heart.

He was a fit 73 year old who was still working on building sites up until this first treatment now I have to help him dress.

We go to Clatterbridge tomorrow to see what treatment they can give him.

Get everything on that list and ask the caller to repeat and repeat until you get the answers understood.

Keep a notebook handy and write down what you can. You will forget, we are human.

Stay calm, but use that call to the limit. You might have difficulty get hold of someone after you put the phone down.

Ask why there’s only HT? But I agree that is an amazing first treatment that we all go on to put the cancer to sleep, on its own.

Ask for the people you can contact for direct lines to oncology. You should have a specialist cancer nurse and a route to hospice doctors too (for pain relief not hospitalisation) they’re the experts.

So make those lists and talk them through.

Hello Clare (SupportformyDadb4d44c) &Fulwood71b9db 

Thank you for your reply. Again please do follow the cracking advice from Mr U in his post above about the meeting. Here's a list to help you with your questions:

Questions-to-ask-your-healthcare-team.

Please do let us know how you get on.

Best wishes - Brian.