Hi everyone,
So we have an appointment with the oncologist coming up on 19th June. As some of you may know, dad was diagnosed at the end of Jan 2016 with advanced prostate cancer. It had spread to his bones and it was I. His shoulders, spine, and pelvis. It was an aggressive form of cancer at Gleason 9. After his first round of chemo starting in April 2016 he has just been on HT injections and he's been doing really well. We have seen the onco twice since as both times he has said things are ok and to just carry on with the HT. he is also on the clinical trial so has regular blood tests and questionnaires asking about how he is feeling.
Should we be asking for a re-scan to see what's happening? Or do they only re-scan if dad is getting worse? His PSA was 33 and went down to 0.3.
Is there anything else any of you think we should be asking?
Obviously we all follow dads lead and he doesn't tend to ask any questions at all, just listens to what the doc has to say but am wondering if it is a case of "if you don't ask, we won't say/do anything?"
Any help, advice would be gratefully received.
Thanks
Penny
"Some people care too much. I think it's called love." by A.A. Milne |
User
Naturally, you are concerned about Dad's progress but he has the benefit of being treated within the protocols of a clinical trial (which may or may not involve a subsequent scan(s)) and is therefore more closely monitored than he might otherwise have been. Nevertheless, should his PSA or other indications lead his consultant to believe the HT stops working well, it may be augmented or replaced with something else. At present the HT seems to be working well. Should he develop one or a very small number of very painful areas, it is possible that these might be treated with RT to help alleviate any pain and this could involve a further scan to pin point affected areas.
Edited by member 26 May 2017 at 11:46
| Reason: Not specified
Barry |
User
Hi penny,
Like your dad I am Gleason 9 with mets in the bones in similar areas. I started HT and chemo six months later, during the 6 round cycle I was just tested for bloods and got the bone and MRI scan at the end of the chemo. My PSA had dropped from 294 to 3.6 by the end of it. I'd be sure that he has scans at end of treatment. You can only know what the next step is after that. No point in second guessing and all you can do is get on with treatment and keep as fit and eat as sensibility as much as you can.
Good luck with the treatment.
Steven
User
Hi Penny
A factor of forums is they're mostly frequented by want to know people, your dad might not be one. You could ask if he would like to request scans to see if any changes have taken place and as you quite rightly indicate go along with his decision. 0.3 suggests all is going well.
Ray
User
Hi Penny
I agree with Ray.
I've been on a clinical trial now for over 2 years.
I started asking every 3 months about having a CT scan (after about 9 months on the trial) and was told by my Oncologist that there was no need since all the blood results (including psa were all ok) and I was feeling ok. These I was told are the best measures.
I did eventually get a scan after 28 months of and it showed that my cancers were dormant and I was given the option of going onto Intermittent HT and ceasing the trial .
I'm inquisitive and like to see all my results but not everyone likes to know the detail.
I'm sure your Dad is handling it in his own way which is right for him, it doesn't change anything and I'd say as long as he feels ok and the blood results are ok then things are going to plan.
Being on a clinical trial means more regular tests and I found this very reassuring.
All the best and keep posting
Paul
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User
Naturally, you are concerned about Dad's progress but he has the benefit of being treated within the protocols of a clinical trial (which may or may not involve a subsequent scan(s)) and is therefore more closely monitored than he might otherwise have been. Nevertheless, should his PSA or other indications lead his consultant to believe the HT stops working well, it may be augmented or replaced with something else. At present the HT seems to be working well. Should he develop one or a very small number of very painful areas, it is possible that these might be treated with RT to help alleviate any pain and this could involve a further scan to pin point affected areas.
Edited by member 26 May 2017 at 11:46
| Reason: Not specified
Barry |
User
Hi penny,
Like your dad I am Gleason 9 with mets in the bones in similar areas. I started HT and chemo six months later, during the 6 round cycle I was just tested for bloods and got the bone and MRI scan at the end of the chemo. My PSA had dropped from 294 to 3.6 by the end of it. I'd be sure that he has scans at end of treatment. You can only know what the next step is after that. No point in second guessing and all you can do is get on with treatment and keep as fit and eat as sensibility as much as you can.
Good luck with the treatment.
Steven
User
Hi Penny
A factor of forums is they're mostly frequented by want to know people, your dad might not be one. You could ask if he would like to request scans to see if any changes have taken place and as you quite rightly indicate go along with his decision. 0.3 suggests all is going well.
Ray
User
Hi Penny
I agree with Ray.
I've been on a clinical trial now for over 2 years.
I started asking every 3 months about having a CT scan (after about 9 months on the trial) and was told by my Oncologist that there was no need since all the blood results (including psa were all ok) and I was feeling ok. These I was told are the best measures.
I did eventually get a scan after 28 months of and it showed that my cancers were dormant and I was given the option of going onto Intermittent HT and ceasing the trial .
I'm inquisitive and like to see all my results but not everyone likes to know the detail.
I'm sure your Dad is handling it in his own way which is right for him, it doesn't change anything and I'd say as long as he feels ok and the blood results are ok then things are going to plan.
Being on a clinical trial means more regular tests and I found this very reassuring.
All the best and keep posting
Paul
User
Thanks everyone! It's good to know that the bloods and PSA levels being ok are a good sign!
Dad is finally retiring on Monday at 68 years old! Although he is worried, we are all really looking forward to it! Hopefully aft r the appointment with the oncologist we will all have lots of reason to celebrate!
Thanks again for all your replies!
X
"Some people care too much. I think it's called love." by A.A. Milne |