Advanced prostate cancer

FormerMember
FormerMember
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Hi, I am new to the group.  My father, 78 years, has recently been diagnosed with metastatic hormone sensitive prostate cancer iPSA 1224 ug/L.  The bone scan suggests bony metastatis and early MSCC.  My father does not want chemotherapy, preferring quality not quantity of life.  He is having hormone therapy.  

My concerns come from questions that he does not, understandably, want answers to himself.  Firstly, does anyone have any information on how the disease in this state progresses, what the symptoms are as it gets worse, what the pain is and any other issues he may face as well as any concept of life expectancy as he is only having the hormone treatment which he says is likely to continue to work for a couple of years.

Anyone with experience in this would be very welcomed if they could share. thank you

  • Hello Sallox, sorry to hear about your father’s diagnosis.

    If he has early MSCC, he will need a plan to deal with that, has that been talked about?

    As far as life expectancy no one can really answer that. It depends on so many variables.

    It would be worth telephoning the specialist MacMillan nurses on 0800 808 0000 or the prostate cancer UK nurses on 0800 074 8383 to discuss this with them.

    Hopefully others will come along with answers.

    Sorry I can’t add much more.

    Ido4

  • Hi Sallox

    As Ido says, impossible to speculate on life expectancy, everyone is different.

    I do understand your dad not wanting the chemo but chemo is more tolerable than it was 20-30 years ago and some people don't suffer too much in terms of side effects so could still be worth considering.

    The other possibility is to go for a new treatment like immunotherapy, this is normally available on a clinical trial, search for cancerresearchuk.org for more info.

    Best wishes

    Steve

  • Hi Sallox,

    whilst being younger than your dad I have my final chemo cycle tomorrow.  Whilst not a walk in the park it has  (50) been tolerable. I’ve worked 2 weeks out of 3 week cycle (work from home) generally tired week 1 and some week 2, some discomfort which is generally relieved with ibuprofen or paracetamol.

    As already stated we’re all different our disease is different so side effects different.

  • Although I’m considerably younger (65yrs) than yr father I would urge  you to persuade him to accept chemo. Like him my PSA upon initial diagnosis a year ago was also high, in my case 2860, but 1224 is also high, and I also have extensive boney mets.

    I started on hormone treatment early 2019 which will continue for rest of my life, worst side effects: weight gain, muscle loss, enlarged breasts, and hot flushes or extreme sweats. Then came 6 sessions of chemo one every 3 weeks. Worst side effects, not so many, nausea & loose bowels for first week after session one, and cracked skin at ends of fingers. You hear some horror stories with chemo but perhaps not so much for prostate cancer, and very little for me. The point is that after my final chemo session my PSA was down to just 2.5, similarly all my other blood figures were also well down. I even moved house (downsized!!) and went on holiday to Minorca for 2 weeks while still only halfway thru chemo which in hindsight was a ridiculous gamble but I came thru it ok.

    My bone tumours all “exploded” just before I started the hormone therapy & chemo and spent 30 hrs in hospital on intravenous morphine (which was brilliant) but no problems or pain since.

    I don’t believe chemo would impair your father’s quality of life beyond some inconvenience, but could improve & extend it dramatically. My view is take everything they offer, it’s all good.

    As for progression of this disease? Let’s not kid ourselves. It may never be curable but prostate cancer is often controllable & manageable. In my case it is currently stable but in time it will re-awaken as indicated by a climbing PSA, at which time I am likely to have chemo again until the stage is reached when the cancer no longer responds to it. If the boney mets or tumours become a problem again I have my own stash of morphine tablets. There’s no reason to have to tolerate pain.

    Life expectancy? I’ve met men who have lived with prostate cancer for 16 years & more. But once the cancer’s out of the prostate, when it’s advanced or metastatic, then it’s in the body, frequently the bones but not always. In which case life expectancy is much shorter. I’ve been told to plan my life ahead in terms of 6 months at a time. I’m now 1 year into my condition and can expect a few years but not many. A good chance (80%) for 2 years, maybe 3. For 5 yrs could be down to just 40%, but for 10 yrs forget it! No doctor is likely to give you such figures but this is what I’ve concluded from a myriad of reports & studies on the net. I think it’s important to be realistic but at the same time being optimistic & positive about tomorrow. I had to give up work but now I’m back playing golf, doing yoga, and even ballroom dancing again. Each new day I’m just pleased to be vertical & breathing, and trying to enjoy each one.

    Good luck.

  • FormerMember
    FormerMember

    Hello. Up till about 5 years ago chemo would not have been offered as a first line of attack. Only through trials was it found that early use of chemo together with hormone therapy improved life expectancy. 

    A number of people are doing ok for many years on just hormone therapy. I've not had chemo, being diagnosed 6!/2 years ago , so far I'm doing ok. Prostate cancer has many forms, some of which respond very well to hormone treatment. 

    I'm afraid its just not possible to accurately predict the development of the cancer or in fact the side affects of the treatment. Hormone treatment itself can have some unpleasant side effects, and remember that goes on as long as you live. The side effects of chemo generally disappear shortly after treatment.

    Best of luck to your Dad

  • FormerMember
    FormerMember

    I was diagnosed at 72 last March with PSA 0f 1400 and Gleason 9+4, Hormone treatment worked well straight away (PSA now 4) and this should keep him stable for a few years without chemotherapy. I had that but it was stopped due to neuropathy after 4 out of six doses. I now have clear lymph nodes and it did not get to bones. I have 'Reset' the clock and could still live well for ten years. The older we are, the slower it progresses. If you look how the disease progresses, then you will anticipate the symptoms. It is better to treat each day as a new venture and use diversion techniques. Hobbies and work will do that. Exercise keeps it at bay too. Walking, swimming and climbing the stairs.