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Very worried about referral for high PSA

User
Posted 02 May 2018 at 22:33
Went to my GP earlier this week for a completely unrelated matter and he said that since I was over 50 (I'm 55) they may as well do a PSA test. This afternoon I got a phone call from him asking me to come in and see him, and was told that my PSA level was 31 and he was referring me to a urologist. He did a DRE and said that there was nothing obviously amiss.

I've no symptoms - no trouble either with difficulty urinating or frequent urination. Reasonably fit and healthy and take no medication.

I'm very, very worried about this. Does a PSA of 31 inevitably mean cancer?

Any advice (and reassurance!) would be greatly appreciated.

Chris

User
Posted 02 May 2018 at 22:33
Went to my GP earlier this week for a completely unrelated matter and he said that since I was over 50 (I'm 55) they may as well do a PSA test. This afternoon I got a phone call from him asking me to come in and see him, and was told that my PSA level was 31 and he was referring me to a urologist. He did a DRE and said that there was nothing obviously amiss.

I've no symptoms - no trouble either with difficulty urinating or frequent urination. Reasonably fit and healthy and take no medication.

I'm very, very worried about this. Does a PSA of 31 inevitably mean cancer?

Any advice (and reassurance!) would be greatly appreciated.

Chris

User
Posted 09 May 2018 at 21:23

Chris

I would like to emphasise what was said earlier, if you can possibly resist, I  recommend NOT googling for things that have not yet been made clear in your case. I went on a "Google crusade" and wished I never had. I wont go into detail with you at your stage, but 2 pretty major fears I had were made worse by Googling and also watching YouTube Videos. The issues I was worried about  did not materialise during my diagnosis and now during my treatment, so I caused myself unnecessary mental anguish at the very time I did not need it.

Alan 

 

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 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 03 May 2018 at 00:42

Okay, so 'high' in relation to PSA for a man of your age could be anything from 3.1 to 13,000. Our urologist once had a man with a PSA of 160,000. Your score doesn't mean definitely cancer at all - it just means that you need further tests to see why it is where it is. We have had people on here with PSA over 50 and in one case over 70 who were subsequently diagnosed with BPH (benign enlarged prostate) and no sign of cancer at all.

Try not to let your imagination run wild - the urologist will probably arrange for scans and a biopsy (or the other way round) and no-one can confirm or refute prostate cancer until the biopsy results are received - and try to stay away from Dr Google - he tends to be rather unreliable :-(

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

User
Posted 12 May 2018 at 22:17
Chris, I think I said, my PSA was 38, no symptoms, just thought I would get a test. No nodules or external indications. Waiting is the worst bit, I think in a strange way I was relieved when I got the results, even though it was bad. At least I could then concentrate all my efforts on fighting it
User
Posted 14 May 2018 at 20:36

Hi Chris, best of luck for your biopsy results, no matter what the outcome stay strong and stay positive. Even if the results are not good don't lose hope there are so many different treatment options and all give good outcomes especially if your cancer, if you have it, has been caught early. Wishing you all the very best. Will pray for you.

Ants

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 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 13 Jun 2018 at 14:36

Hi Pallance, My husband was diagnosed T3B G9,  He had HDR Brachytherapy in April 2015 and he has just completed three years of Prostrap and had radiotherapy in 2016. He has found the HT caused fatigue and whilst he was having the RT he had disturbed sleep fatigue and felt generally exhausted, at  weekends he was much more energised, and we worked on the garden. His treatment has been curative, and we hope it  has done its stuff. We have a small holding to run, where we grow all our veggies and he has continued to work as a pro musician and singer, although he does less gigs. He is not a cyclist, but fit and he has worked as a fitness instructor when he was younger. He is will be 68 next month, we love travelling, and plan to backpack around SE Asia this winter. We also have moved four tonnes of coal and wood this week. We live very rurally and try to be as self sufficient as we can. 

He has side effects he gets muscle ache in the pelvic area, some days of fatigue some days he gets emotionally low, but bounces back after a day or So. Has it changed our life, yep! our normal, what ever that is has changed, we have travelled less. Was it worth it YES, we have lots of living to do. 

I hope this is useful to you. 

 

All the best Leila. 

 

 

User
Posted 17 Jun 2018 at 13:35
Chris, you have two threads going. Not helpful. Metastatic PCa is NOT terminal. You are NOT under a death sentence. You PCa is treatable, with a wide, increasingly wider range of treatments available. A positive state of mind will help get you through this. Plan to enjoy your holiday and let nothing get in the way of that!

AC

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User
Posted 03 May 2018 at 00:42

Okay, so 'high' in relation to PSA for a man of your age could be anything from 3.1 to 13,000. Our urologist once had a man with a PSA of 160,000. Your score doesn't mean definitely cancer at all - it just means that you need further tests to see why it is where it is. We have had people on here with PSA over 50 and in one case over 70 who were subsequently diagnosed with BPH (benign enlarged prostate) and no sign of cancer at all.

Try not to let your imagination run wild - the urologist will probably arrange for scans and a biopsy (or the other way round) and no-one can confirm or refute prostate cancer until the biopsy results are received - and try to stay away from Dr Google - he tends to be rather unreliable :-(

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

User
Posted 03 May 2018 at 15:27

Thanks, Lyn. It's the waiting and not knowing that's the hardest part about this - can't help imagining the worst. Part of me is saying "Why is my GP putting me through this when I feel perfectly fit and healthy and I didn't ask for any tests in the first place?", while the sensible side of me (which isn't really in control at the moment) is telling me that it's a good thing I did have the test because if there really is a problem, an early diagnosis has got to be good in the long term.

A fortnight to wait to see the urologist is feeling like eternity at the moment. Just have to take it a day at a time.

Chris


User
Posted 03 May 2018 at 18:18

We have all been there - you will be surprised how quickly the time passes. Use the time to download and read the toolkit.

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

User
Posted 03 May 2018 at 19:29

Oh how I wish my GP had suggested a PSA test a while ago!
Yes, it's an awful, anxious time, I'm a few weeks ahead of you, and should get a diagnosis next week.
Don't be afraid of asking your GP for whatever medication and referrals may be helpful in keeping you sane.
Zopiclone sleeping tablets have been a godsend in helping me to regain some degree of equilibrium.
Good luck! Pete

User
Posted 03 May 2018 at 21:10

Thanks, Pete. It's comforting to know that others are sharing this same unwanted journey that we find ourselves on. Like you, I can't help wondering how long this issue - whatever it turns out to be - has been present for. Might have been years. Still, we are where we are.

Please do let me know how your diagnosis turns out. Very best of luck to you.

Chris

User
Posted 07 May 2018 at 20:50

Got my urology appointment through for Wed 16th May, so that's a step forward. I was in a complete panic for about 3 days, but I've had an enjoyable Bank Holiday weekend, and I think I've reached the stage of accepting now that whatever they find is what I've got to live with, so no point in worrying. Need to try to maintain a positive outlook!

The letter gives no clue about what will actually happen at my appointment, but I'm guessing a general chat and perhaps another DRE and PSA test?

Chris

User
Posted 08 May 2018 at 06:26
Hi Chris, I started on exactly the same journey that you are beginning, early in February. I went to the GP with a stiff neck and asked him if he thought a PSA test would be a good idea as my brother had been diagnosed with prostate cancer two years ago. My PSA came back as 38.

I was in to see a urologist for a DRE in eight days and was told my prostate was firm and moderately enlarged. I was lucky enough to get called in for a targeted prostate MRI scan The next day due to a cancellation as I live less than 2 miles from the hospital.

I can relate the rest of what occurred and how I progressed if you wish, but as you have not yet seen your urologist you may want to wait

User
Posted 08 May 2018 at 07:18
The enhanced prostate MRI should be on your list of questions for the Urologist as a non invasive diagnostic tool... As Lyne says don't google too much at this stage. You need enough knowledge to ask the right questions and to make sure you can tell if your specialist knows what he is talking about!

The internet rarely has the good news stories AND it is full of unproven hocus pocus!

This site and a few similar ones in the states are brilliant however...

User
Posted 08 May 2018 at 09:12

Can anyone tell me what's likely to happen when I go for my urology appointment?

User
Posted 08 May 2018 at 09:30
Well be prepared for the traditional "finger up yer jacksie" other than that they will talk about diagnostic tests possible non PC causes and possible treatments if PC is diagnosed.

Key message from me us make sure YOU know what you want to get out of the session and make sure you get them answered.

User
Posted 08 May 2018 at 09:36

I'm not sure what I do want to get out of it (other than to know what - if anything - is wrong with me), so any advice on good questions to ask would be very gratefully received!

Chris

User
Posted 08 May 2018 at 09:39
Chris, on arrival at hospital, I was show to a small room with a bench, couch and a small sink by a nurse. She told me to wait for the consultant. He arrived and went through my PSA results and history, he told me about the DRE. Then it was please lie on the couch on your left side, draw legs up to chest. I heard him put gloves on, he told me to take a deep breath and it would not hurt. He then carried out the procedure telling me to breathe normally. Once finished he told me my Prostate was firm, moderately enlarged, but no apparent external tumours. He told me he was concerned about the firmness as it could be an indication of cancer and the enlargement could be due to my age (66) and I would be referred for a targeted MRI scan ASAP

So you need to ask exactly what the DRE has found, be aware the procedure cannot reach 100% of the prostate and what the implications of the findings are.

In my case a targeted MRI was next followed by a meeting to discuss the findings.

Edited by member 08 May 2018 at 09:57  | Reason: Not specified

User
Posted 09 May 2018 at 14:09

The thought suddenly occurred to me that I have private medical insurance through my work, so I contacted them and they said they this is something they certainly cover, so now I've got a private appointment for 8:30 tomorrow morning, so that'll save me a week of waiting!

Thanks for the helpful information about what happened at your consultation, Pallance. That's very useful to know.

Chris

User
Posted 09 May 2018 at 21:15

Originally Posted by: Online Community Member

The thought suddenly occurred to me that I have private medical insurance through my work, so I contacted them and they said they this is something they certainly cover, so now I've got a private appointment for 8:30 tomorrow morning, so that'll save me a week of waiting!

Thanks for the helpful information about what happened at your consultation, Pallance. That's very useful to know.

Chris

Glad you have got in quick Chris. Speed is always good, not only to get as fast as possible to diagnosis so treatment can start (if you need it of course) but I found waiting between the many various stages for scans and appointments to discuss results the worst part.

I sincerely wish you the best and hope you get good news

Alan  

User
Posted 09 May 2018 at 21:23

Chris

I would like to emphasise what was said earlier, if you can possibly resist, I  recommend NOT googling for things that have not yet been made clear in your case. I went on a "Google crusade" and wished I never had. I wont go into detail with you at your stage, but 2 pretty major fears I had were made worse by Googling and also watching YouTube Videos. The issues I was worried about  did not materialise during my diagnosis and now during my treatment, so I caused myself unnecessary mental anguish at the very time I did not need it.

Alan 

 

User
Posted 09 May 2018 at 21:52

Thanks, Alan.

Sound advice about the Googling - I spent a couple of days doing that and scared myself half out of my mind with worry. I’ve now reached a certain level of acceptance of the position I find myself in (which I would not have believed possible a week ago) and am no longer panicking. I’m just going to stay calm (-ish, at least!) and wait for the facts. I’ve been greatly encouraged by the messages I’ve read here.

Thanks again,

Chris

User
Posted 09 May 2018 at 22:38

Chris

My experience with my PCa is very recent and I have a complete timeline of my experience from start to now. You may not need it hopefully, but if you do, please don't hesitate to ask, as up to date help and advice is, i feel invaluable

Alan

User
Posted 09 May 2018 at 23:13

Chris

I know you are hopefully getting in quick to see your Urologist, but to ease your fears until then, try reading this;

https://www.everydayhealth.com/prostate-cancer/non-cancerous-reasons-your-psa-levels-are-high.aspx

 

I know its from the USA, but the facts remain consistant.

 

User
Posted 10 May 2018 at 11:38

Saw the urologist this morning. He did a DRE and found a nodule on the right side of the prostate, so I then had another PSA test. Next steps are an MRI scan (probably next week) and then a biopsy. Seems to be sticking very much to the script of what I expected to happen!

Chris

 
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