Lorraine is a nurse specialist and sex therapist and here to answer your questions...
I am an 80 year ols male. Been on active surveillance for several years with Prostate cancer. In Jan 17 my 6 monthly PSA result came back at 15 (from 6 last time). Gleason score measured in 2015 at 6
Was immediately put on hormone treatment and had a full body scan which showed two spots outside the prostate. One on the spine and on on a lymph gland. Have just finished 20 sessions of RT and latest PSA is 0.235. So what now.
Have been told I can't have Abiratone added to the hormone treatment because it has not been approved. I must have had chemo first. May be approved in 6 months time.
My problem is - As the hormone treatment is working well at the moment, should I wait for Abiratone to be approved or should I put myself thro chemo. I am very fit at the moment but my liver, heart etc are all 80 years old.
What will chemo add to my life expectancy, how do I balance quality of life against a few extra months.
Oh for a crystal ball. Any 80 year olds out there who have been thro this.
Sorry to read about this it is always difficult to balance these options and of course it is worth remembering that chemo comes with no guarantees too until you try it is is very difficult to work out the results both of the effect on your quality of live and the result.
I did find this that gives a breakdown on options and even suggestions of questions you might ask.
The link about chemo that Steve src60 gave you gives a good explanation about chemo and what it might do to you while it's treating your cancer. There's no saying for sure, though, because just like every other treatment it affects everyone differently.
I had six cycles of Docetaxel chemotherapy between last July and last November and it knocked me for six. It was the most gruelling of all the treatments I've had with many side effects. I still have some lingering ones now, nine months after finishing, although the worst have gone. The chemo brought my PSA right down to the lowest it had ever been - 0.044 - but it looks like it might have started to go up again, which won't be confirmed till my next blood test in October.
The estimates I read and was told is that having "early chemo" can give you between another 10 and 22 months. For me I figured it was worth the chance as I was 61 at the time and my prognosis isn't / wasn't great. Not sure what I'd have decided if I was 80.
If you click on this link it takes you to a web page where you'll find several links that I found useful when trying to make up my mind about whether or not to have chemo.
Also, click here for some info on Abiraterone including who can have it and when you can have it. I think the criteria might vary depending on which UK country you live in, too.
All the best
Can I start by thanking both Jim and Steve for their reply's.
I have read the info on the sites you indicated.
Just to add to my problem of deciding what to do I am due to leave for a two month trip to the USA in Oct.
If I go ahead with this trip it will delay starting chemo, if I decide to have it, by at least four months. So, how do you define "Early chemo" will a four month delay seriously affect the effectiveness of the treatment.
I understand I cant start the Abiraterone until the hormone treatment stops working or I have had chemo.
I live in the UK. Does anybody no if this rule is likely to change in the near future i.e. allowed to have it as well as hormone treatment that is still working. Are you on Abiraterone Jim.
At the moment I am considering getting a second opinion to help me decide what to do.
This is so frustrating when you feel very fit and have no symptoms that anything is wrong.
You'd need to ask your doctors how long you could delay the chemo for. They've got the full picture about you and can advise better than anyone else. I'd explain to them about your trip and ask if you could delay until after you get back, but ask what difference that could make, if any.
I haven't had Abiraterone yet but I'm told that it could be one of my next treatments - either Abiraterone or Enzalutamide on its own or Zoladex added to the daily Bicalutamide 150mg tablet that I'm already on.
If you'd feel better getting a second opinion then you should. You're entitled to one on the NHS and, if you wanted, you could change all your treatment to a different hospital, although when I asked my GP about that he discouraged me explaining it would cause a delay while the paperwork was transferred.
You want to be able to look back and know that you made the best informed choice possible because you're likely to have side effects no matter which treatment you have and you don't want to be wondering “what if …?” because, as you might have found out for yourself with the hormone therapy and radiotherapy that you've already had, the side effects can be unpleasant.
Many men say the same as you about feeling very fit and having no symptoms. It must be frustrating to feel fine and be told you ought to have some powerful treatment that's possibly (probably?) going to make you feel ill. I was in the position of already feeling lousy so I never had any doubt about having treatment. By the time I'd had my first one I'd already had Sepsis twice and collapsed once. I did read up as much as I could and asked loads of questions before my first treatment, and then for every subsequent one, but I still have moments when i wonder if I made the right choices. Maybe everyone wonders, I don't know.
Please keep on posting and asking questions. I hope you'll get a few more people reply so you can get their views, too, but to get an answer to your question about whether or not the rules on when Abiraterone can be prescribed are likely to change in the near future, you might want to call the Prostate Cancer UK Specialist Nurses. Their number is 0800 074 8383. If you click here it'll tell you more about them and when the lines are open.
All the best
Sorry you are going through this, deciding to go for a second opinion is often welcomed by the doctors as it can be a learning opportunity for them but it will cause a delay in starting any treatment too, some information here on the main site and some more on the NHS site too.
Back in 2011 we failed to get a second opinion because my GP was waiting for the first opinion to asses if it would add anything - well since the hospital lost the first opinion it just might have done.
Hi Streat, I am 74 and on AS with a PSA that has gradually increased to 10.25 over last few years. My Gleason is still 6 although , as you are well aware, even Template biopsies ( of which I have had two ) are not conclusive as the faster growing cancer may be missed .
Suspect my PSA will have increased to at least your level in next two years so I can certainly understand your predicament .
So far I have consulted five different urologists and it is interesting how they rarely agree on the best course of action. Few indeed are prepared to give definitive advice, saying it is up to me to decide .
Think I would not have chemo unless it was the only solution AND was certain of success .
As to Hormone treatment. I am of course no expert, but surely at our age, castration is the best solution ? Certainly that is something I would look at .
Am also looking at various alternative treatments and reading as much as I can.
Have also changed my diet to reduce red meat and diary products and taking supplements such as saw palmetto . Pomegranates and Cranberries are also recommended but no one really knows if they will help a lot. My main "treatment" is daily exercise as this always makes me feel better both physically and , perhaps more importantly, mentally.
Will be good to keep in touch and obviously I hope that whatever you decide, your treatment will be successful. Cheers Keith
Still considering what to do.
Out of interest I rang Prostate Cancer UK and spoke to a Nurse (scottish guy, very good)
i asked him if there was any news on Abirterone being used with Hormone treatment before chemo.
He said No news. What he did say however was that if you started chemo but found it too gruelling after even one session you would then qualify to have Abiraterone. Not something you should consciously start out to do but interesting. He also went on to say that Abiraterone did not work for all men, in other words don't get too excited.
At the moment I think I am going to go for chemo on the bases of no regrets.
Great fun this getting old.
I know what you mean about getting old and I'm "only" 62. What happened to that young bloke with all the energy? He was here just the other day now this worn out old fart looks back at me in the mirror.
I didn't know that about if you found the chemo too gruelling, even after one session, you could go straight on to Abiraterone. Like you rightly say, not something you should set out to do. Having had chemo myself the way I looked at it right from the very first cycle was: I've got this far I'm not giving up now. It was like I'd climbed a mountain each time and the thought of doing that as a ploy is not something I'd recommend.
If you do finally decide to have chemo, you've then got the added consideration of when to start it - if you could still get your trip in first that would be better, but that's something you'd need to talk to your doctors about.
Until you've decided for sure what you're going to do, keep on asking questions, both on here and to your doctors, until you're as sure as you can be.
All the best
Difficult choices for us all to make sometimes with regard to treatments, sometimes I think best to go with what oncol thinks best course of action.
I had chemo early, end of first year. Prety much put over as "this is what's best" kind of way. A year in to treatment i think i was willing to try just about anything!
I'm glad I did have it, coming up to four years since diagnosed and I feel bloody good considering lol. I believe (right or wrong) that is due to early chemo.
I was very fortunate as I had almost no side effects at all. Would I have been so keen to have it at 80? that would depend on general health and I would think oncol would not suggest it if thought that you're body was not up to it.
Do what feels right and have no regrets
Hi Steve and others
Decision made. I am going to have the chemo.
Reason No regrets.
Wish me luck and I will report how I got on in case it helps others
Fingers crossed you have a an easy time with it.
Little tip for you that was passed on to me......when I had my chemo I got a metallic taste in my mouth, apparently this is quite common. Freeze down some pineapple chunks and suck on them whilst receiving chemo, the acidity prevents the metallic taste.
Regards and wishing you well
My advice is to follow every bit of advice that your medical team gives you while you're on the chemo. Be especially vigilant when it comes to your temperature - not just a high one, but a low one, too. A low temperature can be an indicator of Sepsis just as much as a high one can. You will be given something showing what qualifies as a dodgy temperature.
Your medical team will give you other meds, such as steroids, to help counteract some of the main side effects, but there are other side effects that not everyone gets so you'll get nothing for those unless and until you tell them. My first cycle resulted in terrible pain that meant I could hardly even get out of bed. I put up with it for about 5 days and as soon as I told someone I was given the correct strength of painkillers that made it all bearable.
Listen to your body while you're on the chemo, but still try to do some gentle exercise and keep active without overdoing it.
And keep on posting here whenever you want to - there are more and more of us on here now who've had chemo and who'll have an idea what you're going through. Of course, there's a chance you might just sail through and wonder what all the fuss was about - I've heard of guys that's been the case with. Hope you're one of them!
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