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PSA 7.3 - referred to urologist

User
Posted 26 Dec 2018 at 17:44

Please don't think that I am not genuine. That hurts me to think people might somehow have that impression of me. All I have here is inescapable mental torture. Families can be tricky and my wife and son coming with me was not an option. I left to give them a break, but I could not handle being away. Of course, my mother became upset when I left the next day. My sister was supportive in the same way as everyone on here. Nothing though seems to help.


H

User
Posted 26 Dec 2018 at 17:48

On my first referral to a Urologist for a urine flow test, due to my bladder never entirely emptying at night, combined with increased frequency of visits, I was simply given a months medication, though around the same time my PSA was around 7. The medication largely reduced my night time visits.


A subsequent routine six monthly PSA result put my PSA at over 10+ which hastened a return to the Urologist for a TRUS Trans-rectal ultrasound and biopsy, which was done within an hour (a bit nippy!) with a two week wait for results. The results were that cancer had been found but at a low level and told, it was not the news that I would want to hear, but that it had been caught early, so far from the worst of outcomes. I was given a pamphlet to learn from as to what might be about to happen, I shoved it in drawer and never looked at it, hero that I am!


I was informed the next step was to have an MRI (you might have already gathered, that some here, seem to have had the MRI before the biopsy, that I can't explain) so the surgeon could assess what my options might be regarding treatment. Due to bruising caused by the biopsy there's a six week wait for the bruising to subside before an MRI can be done. So, even more time for the imagination to play games.


A further two weeks passed after the MRI scan, before I was summoned to meet the surgeon (three hours on a bus!) to discuss the findings. After learning my options, which were an operation or radiotherapy, I was initially told a partial prostatectomy should suffice, only to be followed by, well maybe a radical prostatectomy would be better but at least the nerves are ok and erectile function could be preserved, only to be updated again! to removal of some nerve tissue being the final decision with erectile dysfunction being the outcome, though now I'm told there are courses to remedy this! so, all in all, a quite bewildering journey for me


Regarding radiotherapy, I was told that when that is not successful, there is a very slim chance that surgery is ever successful, that's why I chose surgery as my preferred option. Also, I was then 69 years old and couldn't foresee that if one failed I would be fit enough for yet another treatment.


However, all turned out well for me. Only three days in hospital! and then out wearing a catheter, returning after for one week for an xray to determine whether the surgeon reconnected some tubes well enough enabling disconnecting the catheter. Some pain, and tears of frustration also some waterworks accidents, which can be embarrassing but that was mostly with leakage from where the catheter enters the penis, there must be a better solution for this small but humiliating problem. I've gone, in three months, from three Incontinence Pads a day to hardly needing one at all now, and almost, since removal of catheter, no need at night at all, though I did wear one just in case. Keeping up the pelvic floor muscle exercises is crucial to recovering bladder control.


Well I have ranted on a bit! I too had a very harrowing time of it, veering from gloom and doom to, I can come through this and reach my 70th! which i have. I've now had my three month clear, or almost negligible PSA result, so much to appreciate and aiming for that free TV licence at 75 for now.


I hope there is something here which helps put your circumstances into a better perspective.


From what I've read on this excellent forum, it seems there are few cases exactly same within the whole spectrum of PC'r


Best wishes in the coming months and years.


 

User
Posted 26 Dec 2018 at 17:50

Haig .    Why  are you prepared to wait  until 8th January  to ask for any help with your mental state  given you describe it as torture?


 

User
Posted 26 Dec 2018 at 17:55

Thanks Pete. I am 50 and do not expect to live very long beyond 55 - and what a life those years will be. I will never snap out of this with the spectre of recurrence and you can see the type of wimp I am. This is why I see no point in it all. Fortunately, others have fortitude and are able to smile and live again. My life bubble has burst and bubbles do not have a habit of ever knitting themselves back together again. 


H

User
Posted 26 Dec 2018 at 17:57

I have tried to ring the nurses on here. They are closed. Tomorrow I will go to the GP, although I hate him for suggesting the initial PSA. I wish I'd never had done it. I will ask for the strongest thing he can give me - Prozac, whatever. I have never previously taken medication, although I am currently on and almost out of my second batch of Diazepam - he said he would not give me more beyond this.

User
Posted 26 Dec 2018 at 22:08

H,


Did you get a prognostication reading from Gypsy Rose Lee in Blackpool then?


Why you think you have a life expectancy of five years is beyond me.


Have you also become a life assurance actuary on the internet, as you have obviously qualified to consultant level in urology and oncology via Google correspondence courses?


You clearly have some psychological issues over and above a raised PSA test reading and positive MRI scan, and the sooner they are addressed the better.


Roll on the 8th January...


Best of luck and I hope you have a Happy New Year.


Cheers, John.

Edited by member 27 Dec 2018 at 05:50  | Reason: Not specified

User
Posted 28 Dec 2018 at 13:15

Thanks John and all who have heard my broken record these last 4 weeks. I went to the GP (a different one) and he mentioned that if I could not demonstrate otherwise, right there and then, he was going to keep me at the surgery and send me to a psychiatric ward ( I had mentioned suicidal thoughts). My wife who was with me got upset for the very first time and I knew I had to snap out of it. So, I said that despite my darkness I would never do anything because of my wife and son. I got new medication which knocked me out for the whole day - he gave it to my wife and said I could not be trusted to self administer.


I feel with the words of those here and yesterday's GP visit that I can meet this s*** with a bit more guts.


 


H

User
Posted 28 Dec 2018 at 15:06
H , I feel I’ve not really helped with your post much. Click my picture and read my profile. It’s fair to say 3 1/2 yrs ago that suicide seemed the best option for me , and the fear of losing my masculinity at 48 was terrifying. Add to that a 23 yr history of mental illness already and a bipolar diagnosis .....
It does get easier once acceptance settles in a bit. It’s essential you get sleep and rest , so use whatever you can. I have Diazepam but don’t use it much. However I’ve bern on Zopiclone for nearly 2 yrs which is not good but if needs must ...
I’m guessing you were given Mirtazepine 15mg which I have for emergencies when it all gets too much. I also see a councillor every week which is hard financially but worth it’s weight in gold. You can do this ok !!!! I did it too for my wife and children , the youngest being 8. I’m on an incurable path and still fighting treatment , but I’m still here and fighting !

If life gives you lemons , then make lemonade
User
Posted 28 Dec 2018 at 15:15

Chris, your words, story and fortitude are simply humbling. I have no words. I wish you peace in the New Year and you, like so many on here have actually restored my faith in humanity. Not that I have ever properly questioned humanity, per se, but when I look around at the world and compare it to the people here, there is a reality check on what it's all about. This all sounds pretty corny, trite even, but I don't give a toss. I believe that courage cannot be learnt, but here I have learnt of it from others and that in itself has given me a strength of sorts.


Bless you.


H

User
Posted 28 Dec 2018 at 15:57
Be close with your wife ,, your best friend. You need a best friend and can be closer than ever. Talk talk talk about it all and grow stronger together. My wife and I lay in bed weeping for weeks after diagnosis, yet if my damn cancer hadn’t spread we would be in a great place now recovery wise. Post all you want — plenty of friends here !

If life gives you lemons , then make lemonade
User
Posted 28 Dec 2018 at 16:06

Chris, for what it's worth, from a wimp of my magnitude - you are an inspiration.


H

User
Posted 28 Dec 2018 at 17:23
Chris J.

Thanks for sharing your storey with Haig I think the rest of us we beginning to despair and were unable to come up with anything else to help him, hopefully a kindred spirit will.

Bob
User
Posted 28 Dec 2018 at 17:34

Bob - I am amazed how long people kept trying to help what appeared a helpless cause. Yes, Chris has been a turning point, but so have you and so many others on here. I am now ready to fight, although I have dropped a weight division or two. Six weeks ago I was a light heavyweight (92kgs) and now I am down to a middleweight 81kgs. I don't recommend a starvation diet to anyone though....


As for West Ham, well they are showing some signs of improvement too!


H

User
Posted 28 Dec 2018 at 21:04
Hi Haig

I have just read your whole thread and felt your pain. So pleased to read you have turned a corner. My husband’s diagnostic MRI in December 2916 was a PIRAD 4 and I remember the stress of waiting for biopsy results as being the worst time.

Wishing you the best therefore

Clare
User
Posted 28 Dec 2018 at 21:36

Thank you Clare. I must applaud your resolve in reading my whole thread - I certainly do not have the courage to ever read it. I do know that the people on here have had to put up with me and have felt exasperated by my pessimism and morbid posts; I empathise with their sentiments and yet they have all continued to help in their very different ways. I have turned a corner - Chris' post was a catalyst and just capped the other support I have had here. I won't deny that my latest medication (of which I do not know its name - my wife has it somewhere under lock and key), has helped. Probably the biggest help was a long chat I had with my son (he is 20) as we wandered through some pretty remote woodland for a couple of hours with our (knackered!) dog.


Yes, I have to face this for my dear wife, but my son is someone that I cannot leave behind. Not now.


H


 


 

User
Posted 29 Dec 2018 at 13:25
H,

Pleased you are back on here again as I did wonder if my last post to you was too ‘shouty’ and had frightened you off.

I am also pleased that you have come to terms with the seriousness of your situation (psychological, not urological) and that the new drugs are helping you to keep your emotions under control.

Not long to go until your results, which hopefully, will make your pathway forward much clearer.

We are all looking forward to you getting your results on January 8th, although I suspect you are not 😉.....Fingers and legs crossed!

Enjoy your New Year.

Best wishes, John
User
Posted 29 Dec 2018 at 13:27
People generally do feel an awful lot better from a mental perspective once they get their diagnosis, whether it's good or bad. Uncertainty is worse in many ways than bad news.

Chris
User
Posted 29 Dec 2018 at 13:54

Chris & John - I sort of see you as two of my forum journey stalwarts! Yes, I am in a better place (could I have been in a worse one?) mentally and I even allowed myself a "no cancer detected" moment the other day; needless to say, I banished such whimsical thoughts pretty sharpish. Better for me to expect bad news in order to get on with this, so to speak. The 8th looms like some giant speaking prostate, but I have a sharp spear and a couple of grenades to deal with him. That's 2 full days of 'positive' thinking, so I hope I can continue this way.


H


 

User
Posted 29 Dec 2018 at 14:48

Dearest H


I'm really proud of you for turning yourself around. I hope that doesn't sound condescending as it's meant with sincerity.


As always, all my very best to you and yours.


Janet


 

User
Posted 29 Dec 2018 at 14:53
H , I see my Onco on the 9th Jan with the results of all my tests. They already told me my psa has risen from 38 to 82 so you can imagine I’ve been sick with worry waiting over this period. Such a bu**er cos I feel ok and am working etc but have this monster growing inside me that can’t be seen. Anyway it’s been 9 months since last scans so I guess I’ll be up for more and it can only be a matter of time before they find something. I’m desperately worried about life on HT having fully recovered from surgery

If life gives you lemons , then make lemonade
User
Posted 29 Dec 2018 at 15:50

Oh, Janet, not condescending at all. It was a combination of things that seem to have 'settled' me. Chris' post, everyone's posts, walking in the woods with a son who needed me more than I knew and some mysterious pill which my wife has hidden somewhere. I can't really take much credit at all tbh. I think the waiting has been the worst part of all this process (although being told I have Pca won't be party time either). I have no idea other than the reasons stated why I am more mentally 'prepared' now, but I think I am and I am prepared to go on with this now to the end.


H

User
Posted 29 Dec 2018 at 15:51

Chris - I know helping me has not helped you, but for what it is worth, you are a major inspiration to not only me but I am certain everyone on here.


H

User
Posted 31 Dec 2018 at 21:01

Happy New Year to you Chris and to EVERYONE who has helped me through to this point.


H

User
Posted 01 Jan 2019 at 11:53
H,

I am very pleased that you now appear to have achieved a certain level of serenity, albeit chemically induced.

I am sure we will have plenty to talk about next week, preferably ‘Bugger off elsewhere, you hypochondriac, there was nowt wrong with you all along’, but whatever the outcome the people here will be around for advice.

Happy New Year.

Cheers, John.
User
Posted 01 Jan 2019 at 12:14

Thanks John, yes the chemically-induced whatever, has helped; however, I have reduced the dosage and still have this strange newfangled mindset, with occasional wobbles. I think my mental state had hit the s*** or bust point & I have decided to face up to the s*** rather than go bust. If it was all clear (although I am not really allowing this as a potential outcome), I remember the urologist talk of a 3 month wait and further PSA etc. I'll be honest, John, I would be sorely tempted to say no thanks at that point and just take my chances on a clear targeted biopsy. Counter-intuitive, perhaps, but still. More realistically, I am just now hoping for a low or lowish Gleason and then get on with the treatment as soon as I can.


What I shan't ask for is a chest x-ray. I have smoked liked an idiot for these past 6 weeks, having only been an occasional smoker in the past.


Thanks as always.


H

User
Posted 02 Jan 2019 at 20:59

Evening John,


My urologist phoned me today, although my date for results was to be at the hospital on the 8th. He had been tipped off by anxiety issues from GP and he told me that my biopsy had proved to be negative. He said that I could pick up my macroscopic description report from my GP. This is what it read:        


1. Right Apex: The four core biopsies contain benign prostatic glands which are set within fibromuscular stroma. There is minimal focal chronic inflammation. There is no sign of malignancy.

2. Right Base: The four core biopsies contain benign prostatic glands which are set within fibromuscular stroma. There is focal chronic inflammation. There is no sign of malignancy.

3. Left Apex: The four core biopsies contain benign prostatic glands which are set within fibromuscular stroma. There is minimal focal chronic inflammation. There is no sign of malignancy.

4. Left Base: The three core biopsies contain benign prostatic glands which are set within fibromuscular stroma. There is moderate focal chronic inflammation. There is no sign of malignancy.

Summary: 1-4 Prostate Core Biopsies From Right Apex, Right Base, Left Apex, Left Base - Benign. Minimal Focal Chronic Inflammation.


Initially, I was stunned and elated, but (& forgive me for this), I have somehow now become fixated on "false negatives" & the urologist said on the phone that we would re-test the PSA in 3 months time to see if it is on the rise. I don't think I can imagine going back down that PSA route all over again.


I still have vague urinary issues (never at night) during the day when I might need 4 pees in 4 hours during the afternoon, which may be stressed related, but being the eternal pessimist, I still think the worst.


Sorry to bring this news to people on here who just wish me away, but there it is.


H


 

User
Posted 02 Jan 2019 at 21:13

C'est la vie. Now you can get on with it.

User
Posted 02 Jan 2019 at 21:17
That is fab news.. so pleased for you and how great they let know early.

What a great way to start a new year!
User
Posted 02 Jan 2019 at 21:24
Haig...... only 4 pisses in four hours ?? What a lightweight. I suggest you try to drop this for now and stampede on with living! My brother is a fully qualified doctor and won’t even have a psa despite my diagnosis. Happy New Year

If life gives you lemons , then make lemonade
User
Posted 02 Jan 2019 at 21:26

Thanks Claret. I don't think you know how much of a pain I have been on this forum of amazing humans though. Yes, great news, but having prepared myself so definitively for bad news, I cannot process what I have heard today. To now harp on about my fears of false negatives probably means people would want to reach through their laptops and punch me squarely on the nose.


I had somehow found myself after a horrendous 5 weeks of waiting for PSA and MRI results (as all surely have to varying degrees) in a better state of mind (largely chemically induced). I cannot rationalise this, but I almost feel like I am now unable to see that urologist again for a follow-up PSA. Right now, I want to call it quits and just take my chances and never see him or another PSA/Biopsy needles again. Counter-intuitive and clinically poor decision, I know.


H


 


 

User
Posted 02 Jan 2019 at 21:27

Hi Chris, funny you should say that. I have a GP friend too (he's 52) and he said he does not know or intend knowing his PSA. Weird how the medical profession seem divided on the whole issue.


H

User
Posted 02 Jan 2019 at 21:37

Wow, amazing results! honestly fantastic, hope you are celebrating


love Devonmaid

User
Posted 02 Jan 2019 at 21:42

Your genuine thanks is simply humbling; I cannot properly celebrate an unfinished diagnosis though. 


H

User
Posted 02 Jan 2019 at 22:10
H.

Fantastic results glad to hear they are all negative now bugger off and get on with your life 😊😊😊😊

Bob
User
Posted 02 Jan 2019 at 22:12

Bob. You star. 


H

User
Posted 03 Jan 2019 at 03:18

It seems like Dr Google fucked up! Maybe you have grounds for a medical negligence claim, against yourself?


I hope I have helped you a little bit through this traumatic time, and have not shouted at you too much. Sometimes you have to be cruel to be kind.


You are a lucky man, so now bugger off (and keep taking the tablets) and cut out those death sticks otherwise you might get a cancer to REALLY worry about!


All the best for the future, and Happy New Year.


Cheers, John.

Edited by member 03 Jan 2019 at 04:54  | Reason: Not specified

User
Posted 03 Jan 2019 at 04:26

Really pleased for you, Haig.  Still think we should meet - none of your pupils have ever transferred to us, and that can’t be right!  Happy New Year.


Ulsterman

User
Posted 03 Jan 2019 at 09:24

I'll be in touch. 

User
Posted 03 Jan 2019 at 09:27

Helped a bit? You're joking right? Massively, more like it. Still don't know why anyone isn't addressing the false-negative question - I mean I've read (don't kill me!) that it can happen even after biopsies performed with guidance from MRI.


H

User
Posted 03 Jan 2019 at 09:35
Perhaps there was a mix-up with your biopsy samples? Some one else got your results and vice-versa and you are really G5+5=10.....😉

Cheers, John.
User
Posted 03 Jan 2019 at 09:39

:) I actually read that printed off report about 20 times and checked it was actually me. I still can't help thinking though that I am clear....for now; shan't be able to bugger off for a while - don't want that PSA follow-up. 


H

User
Posted 03 Jan 2019 at 10:04
Great news Haig. Try to live each day at a time. You’re cancer free so time to celebrate.
I’ve just had my “last” PROSTAP 3 jab having had surgery, salvage radiotherapy and hormone therapy....
User
Posted 03 Jan 2019 at 10:16

Humbled, as always. I wish you nothing but peace and tranquility, with a dose of frivolity, for '19.


H

User
Posted 03 Jan 2019 at 11:09
Just goes to show how silly it is to assume "Oh, oh, I'm going to die!" when you get a mildly raised PSA result. Good news, now stop imagining the worst and get on with life. It's too precious to waste in pointless anxiety.

Chris
User
Posted 03 Jan 2019 at 11:21

Hi Chris, yes, looks like I made a real fool of myself on here. 


H

User
Posted 03 Jan 2019 at 12:33
If you have made a fool of yourself, we have all enjoyed it, and all the more now with your tremendous result.

Stick around if you want. I’m here and I haven’t got cancer either...............😉

Cheers, John.
User
Posted 03 Jan 2019 at 12:50

If others are not offended by my presence, I'd very much like to be part of your community. At times, it was the only thing I clung to.


H

User
Posted 03 Jan 2019 at 16:04

I am not offended by your presence. Keep going.


Best wishes,


Ian

User
Posted 03 Jan 2019 at 16:31

Thank you Ian.


Haig

User
Posted 03 Jan 2019 at 17:08

John, PM'd you but your inbox is full. Could you shed a message to allow mine in? It'll only be for this time. 


H

 
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