What’s next - stage 4

hi anna42

i was diagnosed in january 2019 , gleeson 9 {5+4} advanced metastatic prostate cancer very aggressive . 

had docetaxal too much spread for radiotherapy , started on abiraterone as well as zoladex 12 weekly injections .

i'm still here fighting , working part time .

keep positive and exercise that will help with the side effects and the radiotherapy to come .

gd luck 

Thank you so much. I really needed to hear this and so pleased for you that you are responding so well to treatment. Do you mind me asking if you’ve had further treatment other than abiraterone since chemo? The next step now feels so uncertain and I think we need to focus on positive stories… thank you for taking time to respond 

Hi Anna42 I wrote a post some while back you might find interesting.  The end - straight to palliative care! .

You can also read my profile by clicking on my name or avatar.  Please ask any questions, the guys and girls on here are fantastic.  David

hi again 

no thats all i have been on since 

12 weekly zoladex injections and 1000mg of abiraterone a day 

my last psa was 0.2 and everything stable blood wise too 

Hello, sorry to hear your news and I hope you are both coping. 

To echo the previous posts here; there is scope for cautious optimism. Oncologists are, I think, pretty reserved when giving any kind of prognosis and many of them don't like to give one at all. As triplet therapy is fairly new as the 'standard' treatment for most stage 4 prostate cancer, there isn't much data on men 4-5 or more years on from their initial diagnosis. 

My situation was similar to your husband's, with triplet therapy Inc 6 sessions of Docetaxyl followed by radiotherapy on the primary tumour. My Oncologist said that this RT was palliative - I.e. to ease symptoms, and RT is not really viable for metastatic PC unless there are only a few tumours (worth asking about perhaps?). 

2 years down the line for me, and my PSA is stable at around 1, and latest scans were also stable. I will stay on 3 monthly injections and daily tablets of Darolutamide unless something changes. 

The hormone treatment resistance (known as castration resistant PC) is, pretty much, inevitable, but it is reassuring to know that other treatments - 2nd line and 3rd line - such as different hormone treatment, different chemo, targeted radiotherapy injections known as Lutetium-177, and maybe soon immunotherapy, are all 'in the locker'. In fact, the majority of Clinical trials are testing to find better treatments for this castration resistant form of PC. 

As a 46 year old, I am bloody well staying positive and doing all I can to aim for many many more healthy years! 

All the best x 

One thing that occurred to me here was that I have seen mentioned in notes backing up the notes American PRCI channel on YouTube mention of "de-bulking" which seems to be a process of dealing with the original site of the cancer as if it was newly discovered.

I wish I could find the original article again

It seemed as if the aim was not curative, but to significantly set the cancer back.

My memory says that it was quite successful.

Hi BrightonBiker  I have been diagnosed with hormone sensitive highly aggressive Gleason 10 prostate cancer . No bone spread yet but multiple lymph node affected . I am roughly your age . Question is on the line of treatment Am I heading for triplet therapy with Darolutamide+ Hormone+ Chemo or is there any other way ? 

Second how to mitigate affects of hormone therapy like breast development.

Third Private vs NHS treatment (with insurance)and difference.

Recently diagnosed my world is falling(wife,kids,finances) down while waiting for oncologist appointment. Please help with your experience ! ( I.know it is not a medical advice ) 

Hi Maverikd, I’m so sorry to hear this. My husband is 44 and was diagnosed in January, so I can empathize with what you and your family are going through. Many people on this forum said to me that the hardest stage is the diagnosis and I think that is true. We are still devastated that we are having to deal with this, but able to cope with life on a day to day much more now than we were initially. Also Jez has had a really good response to triplet therapy (PSA of 185 down to now 0.19 which definitely helps you stay positive). In case it helps, re your questions:

- our oncologist recommended triplet therapy on the basis that attacking it early will help hopefully keep it under control for longer and since my husband / you are young, you can tolerate it. Overall, it has been manageable. The main side effect has been fatigue and since we have 2 young kids, we struggled initially how to deal with it but we’ve got into our groove now, and I’m hoping the fatigue will be less now we come out of chemo.

- my husband has completely overhauled his diet (largely plant based food, and lots of broccoli, cauliflower, kale etc). You’ll find there’s a lot out there about diet - it’s not for everyone and no proven link between diet and food, but it’s made us feel like we have some element of control and are throwing everything at it. Jez has also continued to exercise during triplet therapy and even on low days has still managed a long dog walk. I definitely think exercise has helped him mentally, and with side effects - and there are recent studies showing how exercise can stop cancer progression. 

- we have private medical through work, but there was a coverage issue initially which led me to look into how the nhs and private could potentially run alongside each other or if we could afford private ourselves. Essentially you need to be under the primary care of an NHS oncologist, or a private oncologist. Darolutimide in particular is very very expensive, so given you’re stage 4 and will be on drugs long term, you’re probably looking at staying with the NHS in order to avoid a massive strain on your finances. But that doesn’t mean you can’t get a second opinion privately from a centre of excellence (such as the Royal Marsden) at key stages to just make sure you are happy with the course you are taking. Even though we’re private, we’re with a local oncologist but have used RM for second opinion twice now (once at the outset to discuss triplet therapy and whether they’d recommend that) and second recently to discuss radiotherapy. From our experience, the oncologists are happy to discuss together and there’s no tension with getting second opinions.

i hope that helps and please do reach out if you have any more questions. This forum has definitely helped me - not least just hearing stories of people who are 6/8 years into this journey and still going strong. Stay positive, there is hope x

Hi Maverikd , sorry to hear you have been diagnosed at such a young age, but treatments and drugs are improving at such a pace that it isn’t the disease it was even when I was diagnosed.  Firstly, once you start on the HT the cancer should immediately stop growing so there isn’t a panic to rush into treatments.  Generally Chemo is a systemic treatment, designed to attack prostate cancer wherever it is in the body.  Radiotherapy is more targeted so is an alternative if the spread isn’t that great.  Do you know your TNM score?

It isn’t easy to remain positive sometimes, but I think it helps your body fight the cancer.  Please ask any questions and you will get honest answers.  Try not to use Dr Google as you will scare yourself silly with misinformation!  Best wishes, David

Sorry, I’ve just realised I’ve assumed it’s stage 4 but you didn’t say that. I can only talk to our experience which is stage 4, but others will be able to help if it’s localised advanced, which might lead you on a different treatment path