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User
Posted 12 Jan 2017 at 20:36
Hi my dads been referred to oncology today. He had a bone scan which shows mets to a few areas. The PSA result was 195 which terrifies me. I know that's so high. My dad has no symptoms other than the ache from the bone mets. He's bee referred to oncology and will see someone in the next few weeks. I've read PSA results can be high but not sure how high they can go.

Any advice

Thank you Amanda

User
Posted 12 Jan 2017 at 22:20

Amanda,

PSA can go into thousands but when it gets to this stage the PSA does not necessarily mean a man is considerably worse in terms of pain than those where it is in the hundreds and pain management for those experiencing it and being able to continue life and extend it are the important considerations. We have had men on this forum with very high PSA figures that have lived for quite a few years whereas some men with quite low PSA figures have died comparatively early. So don't place too much importance on relative PSA figures.

Barry
User
Posted 12 Jan 2017 at 22:59

You may find it easier to keep track of replies if you stick to one thread rather than posting in 2 or more places Flora

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

User
Posted 16 Jan 2017 at 22:01
Hello Flora

Just to add to Julie's message - my husband had a PSA of 6700 when he was diagnosed in October. It's still quite early days for us so I don't have much useful advice I'm afraid other than to say that the first few weeks are really hard while you wait for all the results - but it becomes a bit easier to deal with once you have a treatment plan.

Take care x

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User
Posted 12 Jan 2017 at 22:20

Amanda,

PSA can go into thousands but when it gets to this stage the PSA does not necessarily mean a man is considerably worse in terms of pain than those where it is in the hundreds and pain management for those experiencing it and being able to continue life and extend it are the important considerations. We have had men on this forum with very high PSA figures that have lived for quite a few years whereas some men with quite low PSA figures have died comparatively early. So don't place too much importance on relative PSA figures.

Barry
User
Posted 12 Jan 2017 at 22:59

You may find it easier to keep track of replies if you stick to one thread rather than posting in 2 or more places Flora

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

User
Posted 16 Jan 2017 at 21:06
Thank you, apologies if I've confused things by posting twice. There were so many conversations and categories got a bit confused. 😊
User
Posted 16 Jan 2017 at 21:34
Hi Flora,

Yes your dads PSA is quite high and usually but not always you would expect bone mets at that level, the sight has been down for a few days so replies will be a bit spasmodic.

In the first initial diagnosis it is so scary and bewildering everything is surreal but you have come to the right place for help and advice.

You can down load the tool kit from this site details are on the first page.

You can also ring the PCUK nurses and numbers are also on the top of the site.

I know you are going to be very worried and that's understandable but just to be helpful my OH Trevor was diagnosed with a PSA of 13000 and multiple bone mets in fact his whole torso and that was in 2013 and he is still here , still mobile and still fighting . We will be 4 years post diagnosis in May .

Keep looking forward , keep hope and I wish you a very long time still to come with your dad.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Jan 2017 at 22:01
Hello Flora

Just to add to Julie's message - my husband had a PSA of 6700 when he was diagnosed in October. It's still quite early days for us so I don't have much useful advice I'm afraid other than to say that the first few weeks are really hard while you wait for all the results - but it becomes a bit easier to deal with once you have a treatment plan.

Take care x

User
Posted 20 Jan 2017 at 21:27

Thank you all for replying. My dad had his first Consultant appointment today. I went with him. He's been put on Bicalutimide (sorry if I've spelt it wrong, he's on 150mp once a day) He's got 5 weeks worth and then his first hormone injection will be in two weeks. The consultant has also referred my dad to see an oncologist however they're going to discuss whether he'd be suitable for chemo now. Dad has heart failure although he's had this for 6 years and you wouldn't know it, his hearts been doing fine. 

 

The consultant spoke really positively about the hormone treatment and said that this is usually effective for many men for a decent period of time. I know it's not always the case and I'm praying that dad responds well. Dad has several areas of bone mets but they're not treating that at the moment. We were told to wait and see how the hormone treatment goes however he could have radiotherapy if needed. The consultant said to dad "as soon as you get the prescription from the hospital pharmacy take your first pill, don't hang around" 

 

They are not doing a biopsy. I asked about this but my dad doesn't have a bottom (well he does but it was sewn up after his bowel cancer op 18 months ago) Dad's on warfarin and they'd rather not have him stop taking it. we were told that as his PSA is 195 and he has bone mets they are assuming its prostate cancer. I have heard that they can do scans for people in dad's situation and I'll remember to ask that when I go to the next appointment with him. I am worried that dad's cancer didn't show up on an MRI and CT scan he had done a year ago, as part of his screening following his bowel op. The consultant checked and said that he couldn't see anything on the scan but said that doesn't mean nothing was there. I'm panicking now that dad may have some aggressive kind of cancer, particularly as I thought PC was slow growing. 

 

Anyway, thank you for listening. Dad's got his next appointment April, so I guess we'll know if he's responding. I think he felt better today after the appointment. At least he is taking something now which might help. I can't imagine what he's going through. My family have had such a difficult 2 years (dad having bowel cancer and mum is in remission for non hodgkins lymphoma) I'm going to print off some of the booklets available for him. 

 

Is there anything else dad can be doing to help himself now. He's going to try and walk daily, his appetite is good at the moment and he has no other symptom apart of aching in his groin and leg (some numbness too) 

 

Appreciate your time and take care 

 
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