dad been diagnosed with prostate cancer

Firstly welcome to the forum, it a great place to find information and support, although non of us wish we were here, your last statement regarding being positive is a good start. The biopsy will be required to complete the picture, and will tell how aggressive it may be, this will be stated by two numbers 3+3, 4+3 etc and when added together will give the Gleason score, the higher the figure the more aggressive, the staging will be signified by a T followed by a number and letter, the spread if any will be shown as N? for lymph node involvement, and M for bone involvement and both will be followed by a number, a zero being no involvement, mine was classed as PSA 94.4 T3b N0 M0 which means locally advanced but no spread. Once you have all these you will have a better idea where your father is, and what treatments are available. It would be a good idea to get the toolkit which is free from this site and maybe call the nurses on here who will try to answer your questions, the hormones will be to bring down the PSA. and starve the cells of testosterone which do have side effects for some, but vary in degree from person to person. The time between tests and results are the worst time, but as you say stay positive and follow up all results and appointments and either take notes or as I do record what is being said as at this time it's easy to mistake what is being said at the time as emotions often can cause confusion.

All the best

Roy

This stage is very difficult as there is so much uncertainty as tests are done and results analysed. Make sure, as others have said, careful notes are taken so that where they are not clearly understood, they can be interpreted here. There is a lot of knowledge on this site. Whilst the PSA is high if it is 800 the medics appear to have reacted quickly starting tablets to avoid what is called tumour flare and injections for hormone therapy. You should see the PSA come down in due course. The first issue to resolve is the gleeson score and staging. If there is no spread to either lymph nodes or bones then it is curable hopefully. If there is spread,then though incurable there are lots of treatments to slow down progression. I am in the incurable camp with bone met spread but still here on hormone therapy two and a half years on! So there is always some hope no matter where your Dad is. Keep coming back for support and help. Good luck.

As you say the reduction in PSA is good news as it shows the hormones are having an effect, but the spread to the bones and lymph glands do suggest its aggressive, but many on here have had higher PSA and more spread and gone for many years so don't despair, the hormones are to put the cancer to sleep, hopefully for many years. You don't say how old your father is, but it sounds as if he is one of the old school, and does not question things, so it may be good if he will allow you to ask questions on his behalf and attend meetings with him,. so you can relay what is being said.

Roy

As others have said this is not the best news, but with a starting PSA so high it was probably inevitable that spread had occurred. My own husband had similar spread, including the spine, with a PSA of 25. That was well over 3.5 years ago and he has a Gleason score of 10' which makes his current progress seem almost miraculous. The important thing to remember is that the HT can and does generally work to bring down the PSA and stop the cancer from growing for a period of time! even when that changes! the medics can add other drugs to keep it at bay. We have had Zoladex (the 12 weekly implant), Casodex and Stillbestrill and we still have chemo and Abiraterone or enzalutimide to go, amongst others. I'm saying this to let you know that good times can still be had.

One matter that might be helpful is to ask if you dad got a specialist nurse appointed? We didn't understand our urologist, well he just said more or less what was said to your dad. But we had a later appointment with the nurse who showed us the scans and explained the scores on the doors, she was very helpful in those first weeks and she was much more approachable than the doctor.

The other thing is to ask your dad to get referred to MacMillan (the GP can do this). This will be helpful to him and your mum if they need any support or need to apply for PIP or AA. These are the benefits payable to those who have a diagnosis of cancer that is incurable, as long as you qualify. In our case our doctor gave us a DS1500 form which autiamatically qualifies you. This scary form says that in the doctor's opinion you may have six months or less to live. Don't be alarmed at this because what it really means is that you have a cancer diagnosis which is incurable and if you did pass away from that in the next six months, it would not be classed as an unexpected death. I can say categorically that this form is very hard to ask for but it very helpful when it comes to these non means tested benefits and it helps you get a blue badge. In our case we have had two DS1500s now as they last for three years. The blue badge is enormously helpful as my hubby needs space to get in and out of the car due to his back and hip mets. Anyway, this is some of the stuff that MacMillan can help with. I'm sorry if this seems bleak, it's meant to be helpful and give you an insight into how you can be helped to live with this disease and reduce the money worries it may bring.

Apologies for the long response, please contact me by email if you want to know more.

With kindest regards

Allison

is your dad in a trade union? If so it is important that he involves them now before he makes any decisions or has any more meetings with his bosses or occupational health service. If he isn't in a union, now is the time to join. He needs some very good & reliable legal and financial advice before he decides about early retirement etc - if he is working for the local authority there is a possibility that he would get more money by persuading them to give him ill-health retirement (rather than early retirement) or even voluntary redundancy if it is available (which it is in most councils). The other thing to consider - and I am sorry to be blunt - is that if his diagnosis becomes terminal, he may be better staying employed if at all possible, because most councils pay 5 x annual salary as a 'death in service' benefit which would perhaps mean the difference between your mum being financially secure or being on the breadline with a widow's pension.

Lots of things for him to think about and far too complicated to try to work through on his own; in my experience, this is something the unions tend to be fantastic at dealing with.

PS it was only in the old days that a cancer diagnosis led to benefits - these days it is rather complicated and depends on things like whether your mum is his full time carer. People can claim some benefits if their oncologist says they have less than 6 months to live.

If he works for local authority he needs to speak to human resources and take union rep-thats what he pays union for!!!!   The local authority has a duty of care and saying there are no light duties is NOT acceptable.  This applies to other employers as well so he needs support from union.  Good luck with it all and let us know what happens.