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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
Show Most Thanked Posts
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

User
Posted 10 May 2018 at 12:20

Chris


An MRI scan cannot accurately differentiate between benign and cancerous tissue, but some experienced doctors may have an opinion.


I would suspect you will get a biopsy, personally if I have a nodule, I would definitely want one anyway to be sure what it was!


In my case there were 2 different types of biopsy;


1. TRUS - where an ultrasound probe with attached needle is inserted in the anus and after a local anaesthetic, the needle punctures the bowel wall into the prostate to gather samples using ultrasound to guide the needle. There is a small risk of sepsis with this procedure so they put you on anti-biotics. 


2. Trans perenial Template - where an ultrasound probe is again inserted into the anus, but the biopsies are taken via a template mounted between your legs in the area between the anus and the back of the scrotum. The needles are guided through the tissue by ultrasound and your MRI scan data, so are more accurately targeted than TRUS. I had this. Mine was a day case. this is done under general anaesthetic. I had 32 biopsies taken. I was admitted at 8AM and went home at 2PM (I was first on the list) All I had to do was to be able to pass an set amount of urine to be discharged.


I had no post procedural pain, but had to keep off my bike for 2 weeks! You can get blood in your urine and semen after this procedure.


 


 

Edited by member 10 May 2018 at 12:22  | Reason: Not specified

User
Posted 10 May 2018 at 13:33

Thanks, Alan.

Got the appointment through for the MRI next Wednesday, and then the biopsy probably on Monday 21st, so things are moving along. Yes, the urologist explained about the different types of biopsy and said that it was most likely I'd have a TRUS.

Chris

User
Posted 10 May 2018 at 14:55

Another change of plans. Just had another phone call from the hospital. Now MRI scan will be (as above) next Wednesday lunchtime, and the biopsy at 5:30pm the next day (I am assured they will have the MRI results.). Can't say I'm looking forward to the biopsy one bit, but at least I really couldn't ask for things to happen any more swiftly!

Chris

User
Posted 10 May 2018 at 20:11

Not so much waiting then - it will all be done with before you know it.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 May 2018 at 22:02
Chris

My experience was that the thought of the biopsy was worse than the actual event. All over in a few minutes, back to work the next day, a bit of blood in the urine and pink semen for a few days.

Thanks Chris

User
Posted 11 May 2018 at 11:35
I wish you the very best for your procedure Chris and a benign diagnosis

Edited by member 11 May 2018 at 15:02  | Reason: Not specified

User
Posted 11 May 2018 at 17:15
Thanks, Alan. With a PSA of 31 and the urologist feeling a nodule I'm resigned to the fact that it's probably going to be a diagnosis of cancer, but one can hope that it's one of the less aggressive varieties. Fingers crossed!

Chris

Edited by member 11 May 2018 at 17:38  | Reason: Not specified

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 13 May 2018 at 15:46

Hi Chris reading through your posts you seem to mirror what happened to me, although my PSA was higher. I was diagnosed with Cancer last December following a biopsy and then offered various treatment choices, I went through various options including radio therapy, brachytherapy or surgery. After discussions with the various health professionals I opted for radical laparoscopic prostatectomy as of all the options this gave me the best outcome. Now I wont try to claim that this will be best for you but so far it has proved to be very good for me. There are downsides of course, ED and incontinence being the most obvious, but both can be overcome with patience and help from your specialist nurses and doctors, and of course with help from family. There are other obstacles that have to be overcome but my message to you is never give up hope and just keep on living as you always have. When I was first diagnosed I was devastated and began to feel sorry for myself but with the support of my wife and family and all the health professionals I feel so much better and positive and a lot less negative. Good luck to you I hope everything works out well for you.

User
Posted 13 May 2018 at 17:05

Thanks, Ants. I’ve gone through a whole gamut of emotions with this thing. The first few days after the PSA results I was absolutely terrified and I don’t think I slept for about three nights. Then I was angry - the whole “Why me?” thing. Now, though, I just want to know the outcome and I’m determined to maintain a positive attitude and not let this defeat me. Living alone it’s all too easy to start letting your imagination think of all sorts of dire possibilities, but I’m trying to keep myself as busy as possible and occupy my mind with other things. This group has been a tremendous help to me!

By the end of next week I should know the biopsy results, so not too much longer to wait.

Chris

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 16 May 2018 at 18:38

mpMRI scan today - that went fine, although felt like an eternity (I'm slightly claustrophobic, so MRI scanners aren't my residence of choice!). Biopsy tomorrow which, I have to confess, I'm kind of stressed about, but I'm sure I'll get through it ok.

We're getting there slowly but surely.

Chris

User
Posted 16 May 2018 at 20:10

Hi Chris,


Biopsy can be uncomfortable but does not take to long. I opted to have mine under general anesthetic and was glad I did as I was in and out in no time. A little blood in the urine and some small bleeding from my bottom but other than that no real pain or problems. It is not as scary as it sounds. So good luck to you hope it all goes well.


 


Ants 

User
Posted 17 May 2018 at 19:14

Well, "mixed news" I think is the best way to describe today's experience.

First, the good news: the MRI scan didn't show any abnormalities in my prostate. The not so good news: it DID show an abnormality in one of my kidneys, so now I've got to have a CT scan of my abdomen. Do these "un-asked-for" issues never end???

The PSA test I had last week came back as 32 (the previous one was 31, so about the same), so the biopsy went ahead. Very, VERY unpleasant. Two weeks wait now for the results of both the biopsy and the CT scan. Get the results the day before I go away on holiday, so I'm hoping the news isn't too bad.

All in all, not a great day. Feeling very sore at the moment, and very depressed - it just seems to be one thing after another at the moment. I lost my mother suddenly and unexpectedly at the start of April, had the PSA results a couple of weeks after that, and now to cap it all it seems I have a kidney "abnormality". I feel as though this has not exactly been my lucky year so far :(.

Chris

Edited by member 17 May 2018 at 19:54  | Reason: Not specified

User
Posted 18 May 2018 at 13:16
And you had the new MpMRI Scan Chris? Much more successful in diagnosing prostate cancer than MRI.
User
Posted 18 May 2018 at 13:41

I wonder if it will turn out that the kidney irregularity is causing the PSA spike, and the prostate is fine?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 May 2018 at 14:39

Hi Chris,


I had a friend who had similar problems that you have described and his kidney abnormality was down to an enlarged prostate not a cancerous one. It might also be that you have kidney stones which can also cause raised PSA levels. Here's hoping for good news.


Ants

User
Posted 18 May 2018 at 15:48
Originally Posted by: Online Community Member
And you had the new MpMRI Scan Chris? Much more successful in diagnosing prostate cancer than MRI.


Yes, it was an mpMRI - I specifically asked.

The good news (I guess) about the kidney is that purely by coincidence I had some blood tests done for cholesterol, etc, only a few weeks ago, and they included a kidney function test which came back entirely normal.

I've now got a CT scan booked for 9:30 on Monday morning.

Chris
User
Posted 18 May 2018 at 16:12
Originally Posted by: Online Community Member

I wonder if it will turn out that the kidney irregularity is causing the PSA spike, and the prostate is fine?



That would be the ideal outcome. Fingers crossed you're right!

Still quite sore today after the biopsy and I feel like I'm having to go to the loo every 10 minutes! I guess the biopsy has bruised my prostate and it's swollen as a result. Whereas last night I was passing what looked like a stream of blood, today it's just a bit of blood at the start and then it's clear, so hopefully that's a sign of healing.

I'm feeling a little more hopeful today that the kidney abnormality may perhaps turn out to be good news rather than bad. Just have to wait and see!

Chris
User
Posted 21 May 2018 at 15:22

Had my final diagnostic test this morning - a CT scan - and I've managed to move the appointment at which I'll get the results up to this Thursday at 3pm, so in three days' time I'll know where I stand. I'd managed to persuade myself that I was prepared for whatever the results might bring, but I have to confess that with only three days to go I'm absolutely petrified. Just have to get through it a day at a time. I really don't have anyone I can talk to about this, which makes it more difficult.


The quantity of blood I'm peeing as a result of last Thursday's biopsy seems to be decreasing, so hopefully that's on the mend. Difficult to imagine now that it was only 2nd May - 19 days ago - that I got the abnormal PSA result and all this started. Seems like a lifetime ago.


Chris

Edited by member 21 May 2018 at 15:26  | Reason: Not specified

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 https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-smile.gif)


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
 
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