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How often should scans be

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User
Posted 16 Nov 2016 at 13:11

My husband was diagnosed with prostate cancer 2 years ago.  He had no symptons but pains in his legs made him visit gp who advised blood tests including psa.  His result came back at 772.5 and after further tests was told he had prostate cancer which had spread with a 5-7 year prognosis (T3, N1, M1 Gleason 8).

He was started immediately on a drugs trial and also has 3 monthly hormone injections which are all keeping his psa down (in the region of zero).  However, since his original ones my husband has had no scans whatsoever, just the monthly blood tests.  Is this usual?  He won't discuss his cancer and when we visit his oncologist every three months he's just happy with the "excellent news your psa is still zero".

 

I recently read an article about a lady whose husband had just passed away and she was saying how low his psa had been and so certainly not reliable as to how his cancer had been behaving.  Just worries me that my husband's psa is so low now, but what's happening to his cancer?

User
Posted 16 Nov 2016 at 20:25

Hello misselllie

It's very difficult isn't it when our husbands go all stoical on us and try to save us any worry by not discussing their cancer.

I had hoped that a member with the experience or knowledge would have answered you as I can't say what is usual, not having been in your situation.

I do know however, that PC doesn't have a behavioural template and just because one person has a low PSA and was terminal it doesn't mean that it's normal that all low PSA is aggressive and life threatening.

We are all different in how our bodies (and indeed how our minds) deal with cancer. I would just accept that your husband is having treatment that is successfully lowering his PSA. The fact that he is on a drugs trial means he is carefully monitored too.

I hope somebody else comes along to reassure you.

Best wishes

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 16 Nov 2016 at 21:55

He may never have another scan unless they have reason to think the cancer might be progressing e.g. the PSA starts to rise and/or he has new symptoms. There are rare types of prostate cancer that do not generate PSA so someone could die with a low figure but this would usually have been picked up when he was diagnosed. My father-in-law died without anyone realising his cancer had spread but the circumstances were very different to yours; he was having no treatment yet his PSA dropped like a stone from 23 to 1.2 and no-one picked up that there was no explanation for this. It is the inexplicable drop that causes concern - a drop due to HT makes sense.

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

User
Posted 16 Nov 2016 at 21:57

Agree with what Sandra has said. Also, it's not just the way that men  react to treatment but that consultants can also advocate different paths/timing of further investigations/treatment. It does no harm to ask whether a further scan would be useful because of itself PCa can in some cases progress despite PSA being low. It's also the way PSA moves over time and in relation to any treatment given and ongoing.

Edited by member 18 Nov 2016 at 11:36  | Reason: Not specified

Barry
User
Posted 18 Nov 2016 at 08:23
My husband was diagnosed almost ten years ago, after a radical prostatectomy, radiotherapy and hormone treatment he has only had two scans in the past nine years, once when his PSA increased after earlier treatment and once again when his PSA increased after hormone therapy for four years. I think the PSA is the major indicator and if , hopefully your husband 's PSA remains low then he should not have another scan.
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User
Posted 16 Nov 2016 at 20:25

Hello misselllie

It's very difficult isn't it when our husbands go all stoical on us and try to save us any worry by not discussing their cancer.

I had hoped that a member with the experience or knowledge would have answered you as I can't say what is usual, not having been in your situation.

I do know however, that PC doesn't have a behavioural template and just because one person has a low PSA and was terminal it doesn't mean that it's normal that all low PSA is aggressive and life threatening.

We are all different in how our bodies (and indeed how our minds) deal with cancer. I would just accept that your husband is having treatment that is successfully lowering his PSA. The fact that he is on a drugs trial means he is carefully monitored too.

I hope somebody else comes along to reassure you.

Best wishes

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 16 Nov 2016 at 21:55

He may never have another scan unless they have reason to think the cancer might be progressing e.g. the PSA starts to rise and/or he has new symptoms. There are rare types of prostate cancer that do not generate PSA so someone could die with a low figure but this would usually have been picked up when he was diagnosed. My father-in-law died without anyone realising his cancer had spread but the circumstances were very different to yours; he was having no treatment yet his PSA dropped like a stone from 23 to 1.2 and no-one picked up that there was no explanation for this. It is the inexplicable drop that causes concern - a drop due to HT makes sense.

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

User
Posted 16 Nov 2016 at 21:57

Agree with what Sandra has said. Also, it's not just the way that men  react to treatment but that consultants can also advocate different paths/timing of further investigations/treatment. It does no harm to ask whether a further scan would be useful because of itself PCa can in some cases progress despite PSA being low. It's also the way PSA moves over time and in relation to any treatment given and ongoing.

Edited by member 18 Nov 2016 at 11:36  | Reason: Not specified

Barry
User
Posted 18 Nov 2016 at 00:02

Hi missellie

What trial is your husband on ? I've been on the Stampede trial now for around 18 months and my PSA is also undetectable. I have enzalutamide and aberatorone along with the 3 monthly Prostap injection. When I started on the trial i asked about further scans and the oncologist said there would not be any unless there were signs of progression. I did have a bone scan in January as I was having pain in my hip, this showed that there was no progression in fact just the opposite the mets in my bones had reduced significantly :-) so it was was put down to side effects from the the drugs.

When I have my monthly blood test and meeting with the trial nurse they not only look at the PSA but other readings from the blood test as well which would hopefully pick up any change in cancer activity.

I hope this this will be of some help

Ian

User
Posted 18 Nov 2016 at 08:23
My husband was diagnosed almost ten years ago, after a radical prostatectomy, radiotherapy and hormone treatment he has only had two scans in the past nine years, once when his PSA increased after earlier treatment and once again when his PSA increased after hormone therapy for four years. I think the PSA is the major indicator and if , hopefully your husband 's PSA remains low then he should not have another scan.
User
Posted 18 Nov 2016 at 15:58

Thank you so much for answering.  I do feel very isolated at times but not to say we are making every moment count - as our oncologist told us to enjoy the next couple of years "because it will get bad"!.  I think she depresses me more than anyone I know.  Hubby is on same as you - Stampede arm 3.  

 

Best regards :)

 
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