Gleason score 9, (new grade 5) advanced prostate cancer mets in bone, who else is a 9 on here, looking for similarities and thoughts......

Hi Troxly

I have read of people surviving for many many years just on hormone therapy.

It could be worth asking the specialists how you might benefit from Chemo and RT, what is the likely outcome. I have read that some of the latest chemo work well and don't necessarily carry some of the bad side effects as before.

Not sure why they might offer RT as u have bone mets , possibly for any bone pain.

The other thing to consider 

cancerresearch UK.org look under clinical trials,

There are new treatments out there and some specifically for advanced cancers

Wishing you all the best

Steve

Hi Troxly 

I think you have helped on a question I had asked but husband was diagnosed end of May with stage 4, Gleason 9, spread to pelvis and multiple lymph nodes.  He’s on lifelong hormone therapy and was started on chemo just over 3 weeks ago, he had his second round  yesterday. I’m keeping a daily log of how he is feeling in the hope that we can plan around bad days and try enjoy the good. He has had 3-4 bad days out of the 3 weeks and had managed to install a downstairs loo on the good days. I just thought I’d let you know how he is coping so far but time will tell if it stays this way.  
all the best 

Hi, can I ask what age he is, 

When he was diagnosed.

How long he realistically thinks he gets extra per treatment?

Seems like 6-9m extra on planet, but that for me is 4-5m of chemo

Thank you for letting me know.

Each of these decisions are all life changing decisions and we have make them with info we have???

• He’s 57.  not sure on chemo but the oncologist said if treatment works, chemo then radiotherapy, then maybe another 2 years.  He said he chose to do chemo and radiotherapy in the hope it buys some time and in that time they may find other ways to treat and keep it at bay. He did say when he was suffering pain for the few days that had he had to suffer that all the way through treatment then he couldn’t have continued but he managed to do some DIY, this is his way of not focusing solely on PC, and also managed a couple of days in the motorhome.   

I have to say that he is struggling mentally with the diagnosis and still can’t come to terms with it.  he believes that he will only have 18-24 months if he’s lucky but I’m trying to keep him positive and look at others on here who say their prognosis was the same but they are still here after 5 years.

We are both finding it  difficult in terms of our relationship due to mood swings etc but also on how our life has now changed.  We are thankful we were able to retire early and travel but we want more time. 

Thank you, also relay my thanks for your openness.

I thought I had few months left with all the blood n gore from the wrong places....

So then to hear it would be measured in years....I can accept that and felt releif.

But, if I can get a good honest 3y in relatively good health to enjoy my time and be present with friends n family, it's a serious consideration.....

But in my opinion with the hand we been dealt.

Keep focused, keep well, get fresh air, get excercise, eat healthy, drink healthy, sleep well, avoid stress.          This gonna help me get my 3y  and if I do some treatments I could get 3-5y, but I believe it's got its price, I will pay in quality to get longevity!

Its a shit hand we been dealt, if it's time you guys are going for, I'll put my money on you and hubby doing 5y.   I'm a realist, so you can pass that on to hubby!

We can do sweep stakes if he likes! I've out lived the queen already!!!!

Hope you guys are ok, if you can try get your hubby to try living in each day only? It can help? (Just for this day, not yesterday, not tomorrow BUT THIS DAY). my day today was a blessing and lovely, sun, walk, talk, nothing negative today......it's a great tool.

Stay in the day guys, live in the day.

If you get chance maybe fill in profile and add updates??

I believe my hubby would choose quality of life over years but he said if the chemo doesn’t impact too much on his quality of life then it is certainly worth trying, who knows they could even find a cure in that extra time, now that’s optimism.  

It is just a horrible decision and one you just never think you are going to have to make.  we still haven’t come to terms with how different the outcome would have been had the GPs followed up on all the signs and symptoms on front of them  but we know that it’s no use letting it get in the way of trying to stay positive. 

We are ok, we are trying not to stress but it’s difficult when the relationship changes, we need to find the new normal and try not take moods and anger personally as ultimately we both want the same, for him to be here.  

I will have a look at filling in the profile

If you able steer hubby to a cancer group.

It could help spread the load, I try not to let my partner take the load, but try share it out.....

It helps me, her our relationship and let's friends n family in.

My brother-in-law was diagnosed at age 54 with Stage 4 Prostate Cancer,  I am afraid I do not know his PSA or anything from that time but I know that at times between treatments his PSA went up into the thousands at times - sometimes over 3000.  The cancer spread to his bones and other places.  He took all treatments available at the time including HT, Chemo and Radiotherapy. He died at 68.  During the time between diagnosis and his death he managed a good many long holidays driving motorhomes across the USA and Canada.  His wife and two sons still meet his oncologist at Prostate Cancer Charity fundraising events and his oncologists often says that if he had a lot of the new cancer treatments that are available now to treat him with he is sure  he could have had an even longer life and a better quality of life too.

Hi My Husband Keith 48 diagnosed with advanced prostrate cancer October 2021 spread to nodes and bones and surrounding tissues immediately started on degarelix injections every 6 weeks after biopsy and scans where told chemo radiotherapy surgery not an option tried on apalutamide tablets on full and reduced dose but had bad side effects  so where stopped oncologist telephoned us to say as Keith was not having any cancer treatments he would be discharged from his care and he said he would ask urologist to take over Keith’s care T4 Gleason 4+3 and node and metastatic spread  to bones wishing you the very best  I feel your pain Maria xx