Metastatic advanced PCa

Hello Jenny ()Honeybee84,

A warm welcome to the online community, although I'm very sorry yu have the need to join.

I'm a little surprised your father has not had a PSA blood test since starting HT four months ago. I'd have thought they would have at least asked for one after 3 months to see what effect the HT is having. 

I'm sure addition of darolutamide will significantly improve your father's outlook, as you say there are excellent reports of the success of this relatively new drug.

I'm on triplet therapy following recurrence in early 2024. I had chemo that year and am now on indefinite HT and darolutamide with 12 weekly blood tests which fortunately are consistently returning undetectable PSA.

This was triggered by my PSA exceeding the target of 4.0 following RT / HT treatment in 2016 ( was 4.2). I was offered several treatments from do nothing and treat when PSA reaches 10 to the nuclear option of triplet. I dedided on triplet not only because I have always gone for the maximum treatment possible (which has served me well so far) but also because the consultant said chemo might not be possible if needed a few years down the line should my general good health deteriorate (I am 70 this year).

I can't comment of the refusal to give RT, but I'm sure someone else will be along to comment on this.

I send my best wishes for successful treatment for your father.

Derek.

I remember reading about something  called  "de-bulking" where the main tumour site  is significantly reduced in size, either by surgery or by radiotherapy, which  can  have an impact on the overall disease.

It may be worth doing some research yourself and making some enquires of his team.

Hi Jenny (Honeybee84 ), I am 77 and was similar diagnosis to your dad 9 years ago.  The ‘new’ addition of Daralutamide wasn’t available when I started, so I went to chemo and RT.  
I am of the age where I remember RT being a very harsh regime and maybe that’s why your dad is against it.  RT has progressed amazingly since the early days, and is still advancing.  I am sure the HT combination is fantastic, but if RT is suggested, please make sure your dad rejects it for the right reason.  DM me by all means and I would be happy to chat to your dad if that would help.

Hello Jenny Honeybee84 

To add into Steve's comment, there has been a major trial called STAMPEDE which has had several arms to it. One of the findings is that for men with low levels of metastatic spread then.radiotherapy to the prostate area can be beneficial. My husband was in a similar situation to your father when he was first diagnosed in 2020 in that he had abdominal mets which were difficult to get at initially. These were later dealt with by SBRT. All the radiotherapy he had was successful as his form of prostate cancer was radiosensitive but not particularly chemosensitive.

The NICE guidelines indicate that triplet therapy should ideally be initiated within 12 weeks of starting hormone therapy for newly diagnosed men and that the chemotherapy and second HT should commence at the same time for it to be most effective. Age should not be a barrier as many men cope with it and it is used in the palliative setting if the patient is fit enough. 

There is another trial ongoing called the ATLANTA trial which is looking at the effectiveness of treating the prostate with either radiotherapy or removal as opposed to just hormone therapy but like all trials it will be a little while before the results are known

www.imperial.ac.uk/.../

If you are not getting answers to your questions from the experts then there is always the option of a second opinion either privately from a centre of excellence or fron the NHS.

I hope my avatar says it all. Positivity, a healthy diet and exercising as much as possible will give your father the best chance to deal with his disease. My husband had an aggressive form of prostate cancer but even so he beat the odds and we had a good quality of life right up until he died last August at the age of 81. There are many men who have lived much longer and don't forget that the information is retrospective based on older treatment regimes. With the newer drugs and as more is learnt then the protocols will continue to evolve and allow men to live longer and with less side effects. Just enjoy each day as it comes.

I can only repeat what’s already said but it worth saying a few things.

We are here to listen, support and share our experiences with you to ease your mind.

Prostate cancer is terribly slow, a snail of a cancer to be honest so don’t ever be panicked into a decision or nightmares over treatment because you will have time.

The way I see it is that we want quick answers from the consultants and tests but the waiting is the worst part of a slow process. We will wait with you.

75 is by no means old so don’t think there’s no hope there is always hope.

Good luck

Take care

Dear all,

Thank you all so much for your lovely, supportive and encouraging replies. I have shown the thread to my parents and it helps us feel less alone.

I am finding that my real life friends and acquaintances struggle to understand, as their experiences of PCa are in its earlier, less aggressive form - which is of course, wonderful, but means that they don't see that the situation is a little more precarious for us. 

My dad has an appointment to discuss treatment options a week on Wednesday, and your responses help us feel far more informed going in. So thank you once again.