Advanced Prostate Cancer and the Expected Life Expectancy

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Hi all, second post from me but this time my husband is keen to hear from others in a similar situation. 

briefly, he was diagnosed at the end of May with stage 4,  Gleason 9, spread to pelvic wall and multiple lymph nodes.  the oncologist said prognosis 18-24 months but if treatment works then maybe 4 years.  My husband is finding this prognosis so difficult to comes to terms with.  I have tried to reassure him that this may not be the case as I have read on here of lots in a similar situation that have surpassed this time.  
We are still in complete shock and my husband still feels really angry as he had been back and forth to see the GP for a couple of years with, what we know now, many symptoms of prostate cancer and maybe if he hears about guys in a similar situation then it may help.

thank you all x

  • Hi My husband is same situation but we were first told hormone therapy lasts about 2 years then can do other treatments and 30% survive over 5 years. Now though we have seen our oncologist and he will start chemo within 3 months of starting hormone therapy. The research paper says with just hormone average survival 76 months with chemo at same time 88months average. Recently we have heard of people living 10 years and more. We have a private appt next week to discuss yet another treatment that could go alongside so I will ask his view.  Best wishes to you and hubby. 

  • Hi.

    Been looking at this to try calculate the odds, like betting on the odds needs research....

    Gleason scores have massive impact.

    I got my hopes up with reading stories of people with stage 4  t3/4 n0 M1 under 50, even met a couple,

    They been going for many years, 1 was over 10y no chemo or radiotherapy?????   Amazing I'll do what ever he's doing.

    Then really looked into the Gleason scores.

    Hi was a 7 mine was a 9.

    A Gleason of 8 move half the speed of a 9!

    So. I been trying find true stories of people with Gleason of 9 who make it past 5 years and hear how they got there.

    There are lots, there is a price to pay for longevity though.....

  • Ah my husband has 9 Gleason. Thank you for responding. I am already worried about the price to pay the Dr are going to talk to us about a third treatment in conjunction with hormone and chemo it’s only available privately- I’m worried that it will all be so horrendous for him. 

  • Hi Maxxi, thank you for the reply, seems like it’s all down to Gleason score then down to whether the treatment work but 88 months sounds a lot better than 18 for sure but hopefully the their quality of life is good to at least enjoy some of the time.

    my hubby has been researching to see if anything more could be done privately but found nothing as yet, we did see they can offer a treatment for earlyPC but nothing for advanced so we’d be interested in what happens with ur husband or further information 

    I hope you are both managing to cope as best as you can.  We are struggling to come to terms with it all and the impact it’s having, and going to have, but trying to stay positive. 
    take care x

  • Hi jnc, my diagnosis was incurable advanced matast prostate cancer, Gleason 5+4=9, spread to usual soft tissue in the stomach, lymph nodes and extensively to my bones, urologist said 6 to 24 month's, oncologist says much longer 5+ years depending on how I react to the medications, I'm now 17 months in apart from usually side effects, I'm ok.

    Check over 4 weekly PSA at 56ng, so all good, vertually stable. Taking Enzalutamide tablets and decapeptyl injection.

    Read my profile by tapping the icon by my name.

    All the best Ulls 

  • The treatment is with Darolutomide administered in conjunction with Ht and Chemo. It is usually used for people with more spread than my husband but as he is relatively young and Gleason 9so  it can be considered. We have a private appointment on Monday with the Consultant to discuss so I can update you. 

  • Hi Ulls, thank you for your reply.  o struggle to understand why they initially give you the short prognosis when clearly there appears to be a very good chance of 5 years plus.  

    My husband can’t be monitored  is PSA as it’s non secreting PSA, I think that’s what it mean, either way they will only be able to tell if treatment is working by scanning and not sure when that will happen 

    all the best to you 

  • It would be great if you could let me know how you are getting on and what they say in terms of the treatment, it certainly something we would consider for sure.  

    is it rude to ask what age your husband is and when he was diagnosed?  

    xx

  • Hi He is 58 and diagnosed  July

  • I was offered 5 to 6 years with Gleason 8 and extensive spread to bones and lympnodes. Enzalutamide only worked for a short time but it did regress the cancer spread. I feel like I will need another treatment after chemo.

    I feel that the sad loss of Bill Turnbill highlighted what a dangerous disease this is. He managed 5 years