Very worried about referral for high PSA

User

Posted 21 May 2018 at 17:23

All done now - just the results to come! I found when I got mine I had already assumed the worst so what I actually got was no suprise and quite underwhelming!

It's hard but you need to distract yourself with something and rationalise what is happening to you somehow so you can get on with your life... Good luck

User

Posted 21 May 2018 at 17:30

When I got my first result of PSA 38, I ignored the possible implications and put it down to my prolific cycling.

I went into my biopsy scan results in denial and was floored by the results

I think heading in with a mindset of “there is a good chance this could be cancer” would be my approach

Then if you are fortunate to be clear, buy an expensive bottle of something to celebrate

This is just my idea Chris

User

Posted 21 May 2018 at 19:25

With a PSA of 30+ I'm definitely assuming it's not going to be good news, Alan. I'm trying to prepare myself for bad news - that's precisely why I'm so scared. I'm just taking it a day at a time. I'll know the outcome soon enough.

Your messages of support (and those of the others here) have been a great comfort to me. Thank you.

Chris

User

Posted 21 May 2018 at 19:42

Hi Chris,

Your score of 30+ PSA is not necessarily and indication of cancer a high PSA can sometimes be an indication of an infection or a Benign prostatic hyperplasia or BPH, which is not cancer and is one of the most common prostate problems in men over 50. So please don't get to worried just yet. The advice from PALLANCE is good. I was lucky enough to have a great support network around me and when I found out my results I was able to rely on their strength and support to get me through.

I wish you all the best

Ants

User

Posted 23 May 2018 at 18:41

Results tomorrow at 3pm. Must confess that I'm feeling kind of like the man in the condemned cell waiting for execution, which I know is stupid, but I can't help imagining the worst, and that tomorrow I'm going to be told terrible news. I suppose I should take comfort from the fact that the MRI was apparently clear, but this whole "kidney abnormality" business (which is the reason I was sent for the CT scan) has rather knocked me for six.

Got to get through it. This time tomorrow at least I'll (hopefully, at least) know where I stand.

Sorry - being a total wimp, I know. Finding it all very difficult to handle.

Chris

User

Posted 23 May 2018 at 20:06

Hi Chris,

I know your worried, you have every right to be, but don't despair if things turn out for the worst it doesn't mean the end of the world just a new challenge to be overcome and with help from the right people hopefully all will go well for you.

So best of luck, will pray for you

Ants

User

Posted 23 May 2018 at 21:40

Chin up Chris, we are all thinking of you on here. Don’t forget, we know what you are going through, that’s why we are here, to offer support and advice to help you get through this, especially in your case as you say you are on your own. Don’t forget some of the people on here are vastly experienced and knowledgeabl.

alan

User

Posted 24 May 2018 at 11:14

Thanks, all. Even if the "best case" outcome occurs and I'm told the results are negative, I'll still be faced with the situation that, as I understand it, there's something like a 35% "false negative" rate for a TRUS biopsy (ie in 35% of cases where someone does actually have PC, the TRUS doesn't find it). I imagine in that case the next step would be the much more invasive, but enormously more reliable, template biopsy. But we'll see!

(I know, I'm over-thinking things again. Need to just wait and see what the consultant says )

Chris

Edited by member 24 May 2018 at 11:19 | Reason: Not specified

User

Posted 24 May 2018 at 12:16

Don’t pre judge the results too much Chris! I can tell you I had the template biopsy and I am so glad I had that instead of the TRUS

in 8AM, chatting with nurse, anaesthetist, then consultant. Called through to prep, I was chatting with the anaesthetist as the nurse put the cannula in my wrist he asked me about my cycling hobbies and next thing I knew I woke up in recovery.

I had absolutely no post-operative pain I was given a cup of tea and two paracetamol I was then told as soon as I have passed a set amount of urine I could be discharged. Obviously I had a dressing between my legs which stayed on for 24 hours. I removed it and checked for any bleeding with the tissue and there was none so I put a clean dry dressing on left it another 24 hours, it was clean so I had a shower and dressed normally .

At no stage was I in any pain even when walking or sitting. the only annoyance was I couldn’t go cycling for two weeks.

I have heard all about the TRUS biopsies and I am so glad I had the template version done under general anaesthetic.

As I think I said earlier it is recognised as being more accurate mainly due to the fact of the amount of samples they take in my case 32

I know all these things are different for individuals but I don’t think you have anything at all to fear if they send you for a template biopsy and if they do the results will be more comprehensive and informative

Alan

User

Posted 24 May 2018 at 16:18

False negative rate might be 30% for TRUE alone but in conjunction with an MRI the rate of false negative will be much lower. And false negative with a mpMRI must be almost impossible!

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

User

Posted 24 May 2018 at 17:15

Well, this is a bit of a bummer.

Firstly, you won't be surprised to hear that I do have prostate cancer. Could be worse: Gleason 3+3, 8% of positive cores on one side, 16% on the other. Not too stressed about that - I suppose if you have to have PC, that's probably about as good as it gets. Probably be offered either RP or RT for that.

Secondly, the CT scan has showed a 4.5cm tumour on one of my kidneys, which is almost undoubtedly malignant. This appears to be entirely unrelated to the PC - it's just been caught purely by chance by the CT scan. A good thing too, because it appears (fingers crossed) to be entirely contained within the kidney, so hopefully removing the kidney will sort it out. Had it been left undetected for another few years it would have been lights out. One can manage perfectly well with one kidney, which is in fact what my urologist reckoned my body is pretty much doing at the moment.

Finally, the scan seems to show that one of the major blood vessels to my spleen is on the verge of rupturing, so I need to see a vascular surgeon about that.

So, next will be a referral to the MDT at the nearest major oncology centre, who will take care of the PC and the kidney, with a separate referral for the vascular thing.

All in all, not entirely the news I was hoping for, and I'm feeling a tad down about it.

Oh well,

Chris

Edited by member 24 May 2018 at 17:48 | Reason: Not specified

User

Posted 24 May 2018 at 18:02

Looks like you scored a hat-trick!

Sorry to hear your news and I wish you the best for the future.

Kind regards,

John.

User

Posted 24 May 2018 at 18:20

I’m no doctor Chris, but they also found a 2.5 cm tumour on one of my kidneys ( well actually the adrenal gland ) during a routine CT. This is more common than you think and they call it an incidental-oma. I had a lot of tests but they eventually decided it was benign and no problem at all. Having said that , the adrenal gland does produce psa , and my post op psa is now greater than 24 so I’m a tad suspicious.

User

Posted 24 May 2018 at 18:33

Sorry to hear your news Chris but on the positive side your three problems look to be solvable. I wish you well with your future treatments. I am sure with a little bit of luck you can come out of this well.

Best Regards

Ann X

User

Posted 25 May 2018 at 09:05

Feeling pretty desperate this morning, I must admit. Is it worth going on? I feel physically fine now, but all that seems to lie ahead is a whole series of operations and long and painful “recovery” if that’s the word. It all seems utterly bleak. I’ve completely blanked on what the urologist said to me after he gave me the results. Think I probably need to phone his secretary and see if she can tell me what’s going to happen.

Scared shitless. Total despair. Nobody to talk to.

Chris

User

Posted 25 May 2018 at 10:34

Chris, from what you have described your condition is definitely treatable. I felt a bit like you after my diagnosis. I am on 3 years hormone therapy with the side effects of erectile disfunction, hot flushes, loss of libido (no interest in sex). Now some people might say at 66 the latter might not be an issue, but I can tell you it is for me!

Also I will need 8 weeks radiotherapy Monday to Friday, this is going to be really hard and I’m trying to put together a team of drivers to help me get through it. But I have never once thought about giving up And neither should you my friend.

My oncologist talks about me being curable and I’m Gleason 4:5! If you feel that low please call one of the nurses on this website. I have spoken to 2 and they are vastly experienced in all aspects of PCa and helped me enormousl. Call now! Please

alan

Edited by member 25 May 2018 at 10:35 | Reason: Not specified

User

Posted 25 May 2018 at 18:02

Sorry - feeling really embarrassed about that last post now. My emotions at the moment seem to be running wild - one minute I'm feeling absolutely fine and five minutes later I'm in darkest despair and everything seems hopeless. Still in shock, I guess. Hopefully I'll come to terms with it soon.

I should be grateful for the PC - it may well have saved my life. My urologist said that if the kidney tumour had been left another few years it would have spread, and stage 4 kidney cancer only has 5-year survival rate of 8%. It's pure luck that the prostate MRI happened to catch one portion of it and I had a sharp-eyed radiographer.

Chris

User

Posted 25 May 2018 at 20:32

HI Chris,

I'm sorry to hear about your results but as others on here have said all very treatable. Please don't despair we on here will always do our best to help you in any way we can and as Pallance suggested the nurses on here are very good at what they do, also you could talk to the Macmillan people they are also very good. Your not alone Chris so try to stay positive, I know it's hard but trust me staying positive really does help.

I wish you all the best for the future and hope that you get the treatment you need.

God bless

Ants

User

Posted 25 May 2018 at 20:58

You have absolutely nothing to apologise for or feel embarrassed about. I think you are quite right that there will be some shock involved - in most cases, men are a little prepared for the possibility of being told they have prostate cancer because they have understood that their biopsy & scans are because there is a problem - or because they have become symptomatic; in my dad's case it was an out-of-the-blue trip to A&E for urinary retention that led to him being diagnosed so even though he wasn't put through the waiting game he still understood that prostate cancer was a possibility which they were investigating while he laid on the trolley.

In your case, there was nothing to prepare you for anything more than a PCa diagnosis and although it is human nature for people to imagine a worst case scenario and then rehearse how they will react, what will be said, etc etc that was all taken away from you by the actual result being so unexpected.

Hopeful that you will soon have a plan in place and can get on with dealing with it all. My assumption is that they will want to deal with the vascular issue first?

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

User

Posted 26 May 2018 at 08:58

Hi Lyn,

As I understand it, the two cancers are being referred to the local MDT, and there’ll be a separate referral to a vascular surgeon for the blood vessel issue. Of the cancers, the kidney cancer is by far the more serious and will be dealt with first - with a Gleason 3+3 and only a small percentage of positive cores I suspect the PC has no real urgency.

Trying my best to stay positive about this, because everything I’ve been diagnosed with seems eminently treatable, but the sooner I actually start some treatment the better, as far as I’m concerned. At the moment I can’t talk to anyone about this (or even write about it) without breaking down in tears, which is horribly embarrassing.

Went to see my GP yesterday and she’s signed me off work for four weeks. My employers are being great about this, and I can have up to a year off on full pay, which removes any financial worry. I’m hopeful that in a few months I’ll be able to put all this behind me and get on with my life (I don’t think there’s any rush to do anything immediately about the PC), but at the moment I’m just trying to get through this one day at a time and not think too much about the future.

It’s a tough time, and I’m finding the emotional side of it hard to handle. I’ve always been someone who keeps things bottled up (I was brought up very much in the “always keep a stiff upper lip” tradition), but I’m failing miserably to do that in this instance.

Chris

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