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Second PSA test result query - PSA level,Heredity,Ultrasound

User
Posted 08 Sep 2017 at 20:26

Hi, I've been on here before, just before my first PSA test. Anyway, I had the first result came out at 5.8. The doctor recommended another one in two weeks time, (which was this Thursday just gone (07/09). The doctor called me this evening to say that it is now 5.2. So I would have thought that was good, but he said no. He says that it should have gone down to 3 to be good. So he is referring me to a Urologist to have an Ultrasound, to see whether I need a biopsy or not. (He sounded more worried than I do)! The problem is, that my brother, who I have recently spoke to, had a positive diagnosis, following a PSA of 14. He then had a biopsy, with 4 positive & 3 negative out of the 7 needles that they used. So he had his prostate removed (over 5 years ago) and has had the all clear already. So basically should I be worried, with such a low (and falling) result? This PSA test seems to be inherently unreliable and I have absolutely no symptoms. Yes I suppose having a brother who had it, should make me worry more. But I'm just happily bumbling along and wondering whether I should even have a biopsy if they offer it, as (on here) I have read about people whose lives have been made miserable by their biopsies, when some of them have turned out to not even have PC at all! Any suggestions or help offered will be gratefully received. Thank you.

User
Posted 14 Sep 2017 at 21:58

I know how you feel, I had absolutely no symptoms, no problems and just a random set of blood tests one of which was a PSA test through up a moderately high number and from there the balls starts rolling and you / I wondering if it's all really necessary. From my experience, I can say that, at the end of day, the only thing that will bring a clear yes or no is a biopsy and if I was you I'd get it done or spend the rest of your life wondering what's going on in there. Hopefully a biopsy will come back negative and you can stop wondering/worrying.

User
Posted 31 Oct 2017 at 23:18

It seems from what you tell us that the medical opinion is that you have a strong risk of having PCa. A Tansperineal template biopsy is much more involved than a TRUS one and usually done under anesthetic as mine was. Because the cores are not taken through the rectum the chance of infection is far less than with a TRUS. Also, because there are many more cores taken, there is far greater likelihood that any cancer will be found. In my last template biopsy one core out of the fifty taken that contained cancer. It could well have been missed in a TRUS biopsy where typically 8 -12 cores are taken. For this reason some men who start with the TRUS but where nothing is found, go on to have another TRUS or Template biopsy if there is a strong suspicion that there is cancer somewhere in the Prostate not found in the original TRUS biopsy.

Barry
User
Posted 08 Nov 2017 at 22:39

well that must be some relief to you, even though it is cancer. If the urologist (who has all your test results in front of him) feels that AS is appropriate then you must feel a bit reassured? His advice may have partly been swayed by the carer responsibilities you have for your partner.

They should keep a very close eye on your PSA now - get the 3 monthly anniversaries in your diary and make sure you get tested when you are supposed to. If you stay on AS for a while, you will need a DRE (finger up the bum) annually and you should be offered a scan at least annually as well.

Enjoy trying to be a better you although I am sure the current you is just fine!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 08 Sep 2017 at 21:17

A PSA test is unreliable if taken once and in isolation. Taken a number of times over a period of weeks, months or years gives a very good indication of how healthy it is, especially when coupled with scans.

You may have read negative stories but believe me, life is made much more miserable by having incurable prostate cancer because it wasn't diagnosed in time. Dying too young isn't much fun either.

Your brother's diagnosis might increase your risk and it might not; it depends whether he was young when he got cancer. If you have a close female relative that has had breast or other hormonal cancer, that also increases your risk. But the biggest risk factor is that you are male so no harm in having the scan and talking to a specialist about whether or not a biopsy is necessary.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Sep 2017 at 23:19

How far you go along the diagnostic path is something for you to decide. However, many men who have PCa don't portray any of the symptoms of it or know they have it. Some live long lives being unaware and die of something else. Unfortunately, others become aware of it when it is well advanced so that treatment is less effective than it would have been if administered much earlier. Whilst it is true that very high unexplained PSA is increasingly more likely to be PCa, there are some kinds of PCa that produce relatively low PSA or do so at certain times. A scan will not show definitively whether you have PCa or not but will often indicate a suspicious area(s) where a biopsy might be directed.

Barry
User
Posted 09 Sep 2017 at 02:01

Hi Ross


I can't add much more than both Lyn and Barry.   Do please have a look at my profile. Hope you can make sense. Ask any questions. 


May I ask (I may have missed it) how old was your brother at dx and how old are you. ?  Get as much 'data' as possible.   Early dx obviously provides better outcomes / choices.  mpMRi can provide more evidence.  


'gold standard' with current technology is a biopsy and 'scores on the doors'  I was fortunate as I had nearly 10 yrs (my brother had more) of PSA values, so could look for trends.       


Although me and brother had Gleason 7, our age / journey dx. etc etc was very different .  ie He was symptomatic I wasn't


His PSA would go up and down  (mine was always rising).   His was unifocal , mine was multi focal . He opted for RT , I had op


 


Also - in your profile - you state just having prostate/ bladder problems ? What problems ?


However ..you post   Quote "This PSA test seems to be inherently unreliable and I have absolutely no symptoms"


Why have you visited GP then and had a  PSA test ?  I assume DRE also then  


 


The test is 'unreliable'  on the basis .  ie prostatitis, for instance can raise level, BPH (in case of my brother) .


ie it is not an indicator of cancer, as you probably know.    At age 69 . my brother PSA was 3.57 - pre any meds. He made his biospy 'call' on basis of chats with me , his Urologist, and mpMRI (PI-RAD 4).  Hope this helps.      


 


All the best


Gordon


 


 


 


 

Edited by member 09 Sep 2017 at 02:15  | Reason: Not specified

User
Posted 14 Sep 2017 at 19:03

Hi Lyn, Barry & Gordon. Sorry for my late reply. I had ticked 'get email notifications', yet didn't get any, so thought no-one had replied! Sorry Gordon, I don't know how to do 'quotes', so couldn't do what you asked.


Anyway, My brother was diagnosed at 63 (in 2011) & is now 69 and has had his 'all clear' having had his prostate removed by keyhole surgery. I am 57 going on 58 (soon). My doctor said he'd refer me to a Uro like I said, but he said 'you'll have an ultrasound and then get the results from that, when they will decide whether you need a biopsy or not. (I see I've said that already, oh well). The appointment letter came today and says that I will have an ultrasound, then the biopsy either during or immediately after the scan! So who's telling the truth? As my PSA is falling and because I am still slowly recovering from two very bad bouts of something similar to Norovirus (that somehow wasn't contagious)!? I would rather wait a bit longer and have another PSA, just to see if it's fallen anymore. However, if it's in my best interest to have it there and then, so be it. Yes Lyn, I agree, it's better to have an early diagnosis, than an early death! Also, no one else in my family has had any sort of cancer to my knowledge. We are close enough, but don't speak, or see each other very often.


Right Gordon, my prostate/bladder problems are that when I had both of these bouts of illness, I was left with what I believe, was a UTI. (Slow, thin stream, pain while passing urine and many trips to the loo overnight). My doctor on that day (who I've never seen before) did a dipstick test on urine, saying that there was no need to send any off to be tested and that I didn't have any infection! He also did a DRE and concluded that my prostate was slightly enlarged, leading to the PSA. He stuck me on Tamsulosin, which I endured for three days, with daily increases of side-effects. (I already suffer from low blood pressure and that didn't help). By the fourth day following the appointment (seventh day of symptoms), my 'infection' had cleared up and my flow had returned to normal and has been so ever since. (I had identical symptoms in my 20's, which also cleared up within a week). I saw a nurse today (who my disabled partner had gone to see, but she used to work on a prostate ward apparently), who said that this seemed more like I had bad dehydration (I did), and quoted a word at me that sounds like prostatitis, but is pronounced differently? I haven't found what that is yet, so am still researching. So the test is next Tuesday (19th.), when I will update you all, unless I get replies to this, which I promise to answer much quicker next time! Many thanks for your help everyone!

User
Posted 14 Sep 2017 at 21:58

I know how you feel, I had absolutely no symptoms, no problems and just a random set of blood tests one of which was a PSA test through up a moderately high number and from there the balls starts rolling and you / I wondering if it's all really necessary. From my experience, I can say that, at the end of day, the only thing that will bring a clear yes or no is a biopsy and if I was you I'd get it done or spend the rest of your life wondering what's going on in there. Hopefully a biopsy will come back negative and you can stop wondering/worrying.

User
Posted 20 Oct 2017 at 23:44

Right OK then. Me back again. I had an mpMRI 8 days ago, on 12th. October. Thinking that this was enough time to mean that I was all clear, of course the inevitable phone call came from the urologist today (Fri. 20th.). She said that I will need a Template Biopsy under GA at my local hospital. Due to my questioning, she is putting some info in the post for me to read before deciding whether to have it or not. She gave me a result? score? of something that I didn't quite hear the name of, but anyway, out of a possible score of 1-5, mine was 4! Apparently a part of this high score, is due to the fact that my brother had prostate cancer. How on earth do they work that one out? I would like to have known what part of that score was derived from this point, but she either couldn't or wouldn't tell me! I suppose I should have this and having read up on this test, thought it was good that there is less chance of infection, but then noticed the bit about more chance of acute urinary retention. Swings and roundabouts I suppose. I noticed that "Some hospitals will not give you the option of a TRUS biopsy and will only offer a Template one". Mine seems to be one of those. More chance of a proper diagnosis, but more chance of keeping my pee with me longer than is required too! I have a friend who has had to have a catheter for quite a while now (unrelated condition) and it is not something he would recommend for anyone, so hopefully I am in the 64% without AUR and not the 5-36%. I shall await this 'info pack' with great interest... To be continued.

User
Posted 21 Oct 2017 at 00:31

Basically, an mpMRI scan gives quite a lot of detail and a number of measurements can be taken of any suspicious areas including the amount of power being reflected back from the cells. The score is in a range of 1-5; 1 is almost certainly no cancer and 5 is a significant amount of cancer detected. A score of 4 means that the imaging has detected an area which is clinically highly likely to be cancer. The mpMRI also looks at where the suspect areas are situated - if the cells are in the top or front of the prostate, a normal TRUS can't get to them so a template biopsy is needed.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Oct 2017 at 14:54

Well thanks again Lyn. Would you know what that score is called please? It sounded something like a 'rad' score? As it was not a good line. The bit I don't understand is how they got a score by counting my brother's PC within it. So I suppose it could maybe have been 2 or 3, but added a bit on to count family history within it? I'm glad that the lady said that there was nothing outside my prostate, meaning whatever it was hadn't spread, but when I asked "Is that definitely cancer then" she replied that she didn't know, that it could be or might be. I wish there was a way that someone could tell me if I have it or not, without having to give myself far more health risks, by having a 'maybe completely unnecessary' biopsy. I saw a thing on an American website, saying that a lot of these tests are very nasty, invasive things and mostly can't tell you whether you have cancer or not. (probably not a very reliable site though). I suppose I'd better have it, due to my brother's trouble. I just think that, if I hadn't had those two very serious bouts of some undiagnosable sickness in the summer, I wouldn't have gotten on to this prostate train in the first place. Like one doctor told me, it's a funny thing and once you're on it, it's very hard to get off again!

User
Posted 22 Oct 2017 at 15:52

Hi Ross


see https://radiopaedia.org/articles/prostate-imaging-reporting-and-data-system-pi-rads


and my profile


I didn't have any PI-RAD rating, I took advice of consultant.


My brother, had a complete PI-RAD printout (he lives in Australia) - he had an area rated


I agree with you - your mpMRI / PI-RAD rating won't be 'adjusted' due to a sibling/ parent 


However the 'overall' risk to you maybe.  It all depends on age of dx for brother etc .  Which at 63 is quite young


What was your brothers Gleason / Staging then ?


Unfortunately the 'gold standard' currently is cells have to be removed and analysed.  (I had a long discussion with my brother, who eventually decided to have a biopsy).


Have you had another recent PSA ?    What is it the trend on those ?   (My brothers went up to 18, yet just before he started hormone for RT it was 3.57, so was not a good indicator for him, to decide on biopsy )


It all now depends on your own peace of mind, doesn't it.    


What concerns you about a biopsy ?   Pain ? Risk of infection ? Other ?


I was asymptomatic, and was concerned by brother (who had symptoms) had left his biopsy a little late. However he was 69 and PI-RADS 4 - uni focal .    


As he has just finished RT, he has no data to confirm whether what was found by his mpMRI matches to any lesions found (as obviously the gland was irradiated, not removed)  


When I see my consultant in December , I will ask/request if any PI-RAD analysis was performed after my MRI.  I do know mine was very low volume, however scattered throughout the gland.     


 


Hope this helps.        


Regards


Gordon


 


 


 


 

Edited by member 22 Oct 2017 at 16:20  | Reason: Not specified

User
Posted 31 Oct 2017 at 16:20

Hi Gordon & everyone. Sorry for my late reply (again!) I had a nurse ring me up the other day. She said "I'm ringing about booking you in for this biopsy that you need to have". I said "Steady on, I'm awaiting a letter with information to turn up, so that I can decide whether to have this biopsy or not". She said "Well I don't know about that, I've been told to book you in for a biopsy as soon as possible, if you don't have this one, I don't know when we can book you for a later one. So I'll book you in today, then you can read all about it, but you shouldn't cancel it, or you may not get another chance"! I don't think she can have been doing this job long somehow, but I decided, having talked to others (and on here) to have the darned thing and get it over with. So it's this Thursday (2nd. Nov).


My brother never said anything about his Gleason or Staging. He just said that they took seven needles in his TRUS biopsy and four were positive and three negative, whatever that means. When he was offered surgery, he decided to have his prostate out as soon as possible. I can't seem to get hold of him at all at the moment, though he asked me to keep him updated. He seems to have dropped off the world! I haven't had another PSA yet.


So I'm hoping for a good result, with (hopefully) none of the side-effects like AUR. I think that's my biggest worry actually. It says that there's less chance of infection with a template biopsy, though I don't like having to have a GA.  Hopefully it's not cancer, but if it is, then I will cross that bridge when I come to it. I'm a full-time carer for my disabled partner, so I don't really have time to be ill. If anything happens to me, she would have to (probably) go into a home, leaving her beloved garden and everything else behind. Her garden is her life and I think I feature somewhere in there too. But these things supposedly have a good outcome with treatable symptoms, so either something slow-growing or even non-existent would be good. I suppose my best bet is my age. My brother having his DX at 63 means that I'm five years ahead of him, so chances should be slightly better for me, though you never know. I had hoped that the MRI would be the end of it. Ho hum...

User
Posted 31 Oct 2017 at 23:18

It seems from what you tell us that the medical opinion is that you have a strong risk of having PCa. A Tansperineal template biopsy is much more involved than a TRUS one and usually done under anesthetic as mine was. Because the cores are not taken through the rectum the chance of infection is far less than with a TRUS. Also, because there are many more cores taken, there is far greater likelihood that any cancer will be found. In my last template biopsy one core out of the fifty taken that contained cancer. It could well have been missed in a TRUS biopsy where typically 8 -12 cores are taken. For this reason some men who start with the TRUS but where nothing is found, go on to have another TRUS or Template biopsy if there is a strong suspicion that there is cancer somewhere in the Prostate not found in the original TRUS biopsy.

Barry
User
Posted 08 Nov 2017 at 21:18

Okay, so I've now had my biopsy & result only 6 days later due to being on some 'fast track pathway' as a medical secretary said to me. The biopsy was fairly painful, once the anaesthetic and pain relief had worn off. The best bit of waking up afterwards was the tea and toast! How simple things can bring such pleasure... Anyway, I didn't get AUR, although I did have a reduced stream. I'm still getting pain, especially when I sit on something pointy, like the edge of a car seat! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif


So now today (Wednesday 8th. November), I have had my results. I DO have cancer, although the doctor confused me a little. He said that I have a significant amount of cancer within the prostate, but it's not such a bad one, giving me a score? grade? of 3+4 or 7 if you rather. He said that treatment or Active Surveillance would both/either be as good for me at this point so, having heard what some other people have gone through following treatment (ED/Incontinence etc), I opted for Active Surveillance with PSA tests every three months, seeing the Uro every six months and maybe another biopsy in 12 - 18 months. Does everyone think that's OK? He said that I can choose to change my mind and opt for treatment if I want to, but I think this should be OK. I hope.


I keep reading and hearing horror stories everywhere, as people LOVE to discuss their or their family and friends cancers at every opportunity! The Uro also said that I could try to change my fortune by following a healthy lifestyle, losing weight, exercising regularly and eating healthily. That seems to be the same for any and everything you get these days! I already lost over a stone in the summer with all my bouts of illness, but I will try to be a better me from now on. And I used to enjoy real food so much! (What I mean is, as a type 2 diabetic, I'm never full and always feel that I need to eat, even immediately right after meals!) I don't put much weight on though thankfully.

User
Posted 08 Nov 2017 at 22:39

well that must be some relief to you, even though it is cancer. If the urologist (who has all your test results in front of him) feels that AS is appropriate then you must feel a bit reassured? His advice may have partly been swayed by the carer responsibilities you have for your partner.

They should keep a very close eye on your PSA now - get the 3 monthly anniversaries in your diary and make sure you get tested when you are supposed to. If you stay on AS for a while, you will need a DRE (finger up the bum) annually and you should be offered a scan at least annually as well.

Enjoy trying to be a better you although I am sure the current you is just fine!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Nov 2017 at 23:15

Excellent news- sounds like good advice to me both the active surveillance and the healthy life style. .. no downside risk to adopting a healthy diet!

The protecT trial might be worth a read..

Good luck

User
Posted 22 Feb 2018 at 17:12

I just typed out over a hundred words to update my latest psa result and bam! power cut wiped them all out. So anyway it's gone up from 5.6 to 6.4 and that's with trialling these Pomi-T capsules too! Oh well, waiting for a call from my urologists secretary to tell me if he wants to see me again or not. Will come back following this.

User
Posted 27 Feb 2018 at 19:52

Well my Urologist still hasn't got back to be following increased PSA blood test result. His secretary said that he would, as this was the second time I had rung to ask. But maybe 5.8 to 6.4 isn't such a jump, so he's probably not worried about ringing, if he has nothing significant to say d'you think???

User
Posted 27 Feb 2018 at 20:19

It is still so soon after you were diagnosed and the rise isn't significant so I can't see that the uro would want to see you or change the plan - AS is about monitoring the PSA not changing plan as soon as there is a small rise. The next couple of PSA tests will give you a better idea of where it is heading.

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