My Dad, 175 PSA and can't have radio or surgery

User

Posted 12 Sep 2014 at 07:48

My Dad's recently been diagnosed with advanced prostate cancer and his PSA is up at 175. He can't have either surgery (too advanced in prostate apparently) and also can't have radiotherapy as he has colitis and this runs the risk of too much damage to the bowel etc. Waiting for CT scan results but it seems this won't change the only course of initial treatment which are the hormone injections.

Anyone out there having great results with advanced and high PSA just from injections?

Thanks and good luck everyone with your own journey.

Claire

User

Posted 15 Sep 2014 at 17:43

I've been on Stampede control group for just over a year. Well worthwhile as it gives more frequent PSA blood tests and consultations. This should enable timely intervention by the oncologists if things start to go wrong. A patient may withdraw from Stampede at any time if he is dissatisfied with the group to which he has been allocated or the treatment provided. Also, I'm always seen at the appointed time, no waiting which is a pleasant change.

It's a no-brainer!

User

Posted 12 Sep 2014 at 13:50

Hi Claire,

Hormone therapy (injections ) can be vey successful in bringing down the psa and holding the cancer at bay. My OH was diagnosed at 13000 with advanced disease and had dropped to 15, we have had a recent rise but he is doing very well 16mths on.

Have you applied for the tool kit on this site, it can be very helpful in explaining all of the different treatments. You can download it or have it posted to you.

It is quite normal for men with advanced disease not to have the prostate removed with surgery.

I am glad that you have found this site there are many people on here that will offer advice and support, so although it sounds weird to say welcome and keep posting. Let us know the outcome of your Dad's scans. Will keep fingers crossed for him.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 12 Sep 2014 at 21:43

My OH did the stampede trial, and got additional appointments and checks as well as 2 years of Abiraterone. I do not think this drug is available on the trial any longer (I may be wrong) but the additional appointments and help from nurses was a help at a difficult time. Even if your Dad is on the control arm, it may be helpful for him - but the benefit of additional drugs may also be good news.

There is a lot to take in when reading about the trial, but there are a few of us on here who can try to offer advice if we can.

Best wishes to you and your family.

Alison

User

Posted 13 Sep 2014 at 13:30

Whilst hormone treatment alone cannot cure prostate cancer, for some men it is able to control the problem for many years. You don't say how old your dad is but based on your age I am guessing he may be around 70? As the scans have been inconclusive, I think I would be tempted to ask the specialist to reconsider whether surgery might be worth a try. Obviously, if the micro cells have remained in the prostate bed and there is a chance that RP could capture these, a slim chance of cure is better than no chance. Whether this would be possible in your dad's case would depend on his level of fitness and any other medical conditions as well, but I would want to understand whether the consultant is basing the view that there is spread simply on the PSA.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User

Posted 12 Sep 2014 at 13:50

Hi Claire,

Have you applied for the tool kit on this site, it can be very helpful in explaining all of the different treatments. You can download it or have it posted to you.

It is quite normal for men with advanced disease not to have the prostate removed with surgery.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 12 Sep 2014 at 20:14

Thanks so much for your kind reply and advice.

Unexpectedly Dad had a call from the consultant today saying that the CT scan was inconclusive and they had therefore been unable to see any spread. He believes micro cells have migrated but not yet clustered, but just because there is no identifiable spread of the cancer now that this doesn't mean it couldn't happen in the future. They have however offered to put him forward for the stampede trial.

It feels like a little positive news after being hit with the initial bad.

Good luck with your OH treatment, he seems to be doing remarkably well. Fingers crossed your recent blip is just that and you keep going as you are.

Thanks again

Claire

User

Posted 12 Sep 2014 at 21:43

There is a lot to take in when reading about the trial, but there are a few of us on here who can try to offer advice if we can.

Best wishes to you and your family.

Alison

User

Posted 13 Sep 2014 at 12:48

Thank you Alison,

We will know much more about the trial after his appointment on Wednesday. I can see what you are saying about additional appointments and support even if he is in the control arm. It's something I will talk to Dad about tonight.

I hope you and your OH are doing well and good luck.

Thank you again for your reply. It means so much.

Claire

User

Posted 13 Sep 2014 at 13:30

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 15 Sep 2014 at 17:43

It's a no-brainer!

User

Posted 15 Sep 2014 at 23:00

Thank you both for your advice. The consultant seems adamant that surgery is the wrong thing to do as he says it could trigger cells exploding from the prostate. I don't know much more about this but we should ask at next appointment. Dad is 62 and is generally fit but he does have colitis which is the reason for not offering radio therapy. I believe the consultant is basing the fact that the cells have spread purely on his PSA count as he has no other results to show him where the cells are.

I am pleased that the trial has been offered even if he is allocated on to the control arm. I can see now that this would be really beneficial. We are meeting the trial doctor on Wednesday.

Good luck with your treatment!

Claire

User

Posted 22 Jan 2015 at 20:51

My dad sounds to be in a very similar position. He too has advanced prostate cancer and due to colitis is unable to have certain treatments and it's too advanced for surgery. Sadly it has spread to his bones so we don't know at this stage what we are dealing with. It feels like we are always waiting for answers. I hope your dad is doing well.

User

Posted 22 Jan 2015 at 23:02

Hi,

I was diagnosed in September 2014 with PCa with metastases to spine, ribs and pelvis. Started hormone injections straight away and PSA has come down from 914 to 1.1. Started on the STAMPEDE trial in December with the addition of abiraterone, enzylutamide and prednisolone. Last PSA was 0.26. Waiting for next result this Friday. So far things are progressing well.

RT was discussed but with two metal hips it would have had to be modified. The big advantage of stampede is the initial monitoring - seen every two weeks with blood work being done. So all in all I know that I won't be cured but my symptoms are much improved already.

Best wishes to all on this journey.

Davey

Edited by member 22 Jan 2015 at 23:07 | Reason: Not specified

User

Posted 27 Jan 2015 at 21:30

As a 63 year old man with a history of colitis from the 1990s on top of a diagnosis of PCa Gleason 8 in early 2013, I can very much relate to Claire's concern over her father. My oncologist adamantly refused to provide me with radiotherapy on the grounds that (as he put it very bluntly) it would most likely "blow my bowel". PCa is bad enough but the risk of a blown bowel with all its unpleasant implications meant that I was very happy to go along with the oncologist's views. His suspicion that the cancer had spread to my hip bone was subsequently confirmed, rendering the disease inoperable in my case.

Two years on and the first line hormone treatment (Zoladex injections, then Zoladex injections plus bicalutamide tabs) is failing and I'm hoping to start second line treatment very soon. The main thing to remember with inoperable PCa is that we are fighting a rearguard action to delay the spread of the disease for as long as possible while maintaining a decent quality of life. Good luck with your dad and let's all hope that a cure emerges soon.

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