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PSA 7.3 - referred to urologist

User
Posted 21 Dec 2018 at 17:37

Hello AC. Yes, the DRE beforehand (this was done 2 weeks ago) may have increased the PSA, but it had dropped from 7.9 (6 weeks ago) to 5.9 in 3 weeks. No confusion over DRE/Biopsy. My point was that I sat in a nurse's office and said I wanted to speak to a consultant about my MRI result (performed the previous week) because I had no info on it before going to have my biopsy. 


He came in and I sort of broke down (you can imagine) and said my MRI was not clear (I would not have been called in for biopsy had the MRI revealed PIRAD level 1 or 2) and obviously I have PCa etc etc. 


He then said that I should calm down (sounded like John on here) and that yes, my PIRAD was showing level 4 with some overlap (or something like that) with PIRAD 3. I sort of knew that PIRAD 4 and 5 were bad news so I broke down again with the sort of "what's the point" blubbering. He said that sometimes it didn't mean PCa and I countered that 4 and 5 were "given" as being cancer. He got a bit annoyed at this point and almost implied that I thought I was some kind of amateur urologist. He said it was good that the PSA had dropped rather than having risen and he also said that the MRI had shown the areas of suspicion to be contained within the prostate. 


So, I did the biopsy (with a different urologist) and he said PIRAD 3 or 4 did not necessarily mean cancer. I didn't believe him on the Level 4 and I then googled it all to death (Harvard journals, PIRAD 4 false-positives, Cancer forums, basically any data I could find). On forums, some said PIRAD 4 was 80% likely cancer and on one journal that came down to one study (of over 1000 men) of 55% Pca and 34% clinically significant PCA.


To conclude, I am now beside myself having convinced myself that PIRAD 4 means definite (I shall ignore that stupid word "likely") clinically significant cancer. These MP-MRI scans are supposed to be the business and the radiologist has deemed me PIRAD 3 and 4 (probably separate lesions) and now I am back to my diazepam with a bang.


Sorry for the essay AC & it is good to hear from you again.


H


 

User
Posted 21 Dec 2018 at 19:20
What is it that you’re so upset about, Haig? You said yourself that the MRI showed “the areas of suspicion to be contained within the prostate” - in other words, it’s localised. You know by now that localised PCa is a treatable condition and is extremely unlikely to kill you. Ok, it’s obviously not great to be diagnosed with it, but would you be getting yourself so worked up if you’d been told you probably have a curable medical condition that wasn’t called “cancer”?

All the best,

Chris
User
Posted 21 Dec 2018 at 19:48

Hi Chris. As usual, you are right. I dunno why I have been like I have. I kept hoping too much, I guess. I am in a slightly better place now that I have (almost) conceded that I have PCa. I will want to go down the RP route, although I know survival rates are pretty identical with the other treatments. I am in the "I just want it out" camp and I just hope that I can 'get it up' at a later date and that nappies these days don't cost too much. I hope that my optimism about it being localised isn't premature, but with the MRI scan showing this and the PSA at 5.9, I think it is.


Good to hear from you again, H.

User
Posted 22 Dec 2018 at 06:43
I do sometimes chuckle when I read posts here (I sometimes cry too).

Stop diagnosing yourself and consulting Dr Google and wait until you have a professional diagnosis and a plan for the way forward.

Oh, and keep taking the tablets if they are of some help to you.

Your biopsy results can't come soon enough for all concerned! ;-)

Cheers, John.
User
Posted 22 Dec 2018 at 09:26

Morning John, up early again I see. Anyway, I have stopped diagnosing myself - I have made my final diagnosis. My results' day will be mere confirmation tbh. Always good to hear from you old bean.


H

User
Posted 22 Dec 2018 at 12:19

Hi Haig


I said the other day that my husband was awaiting biopsy results. They are now in and he does not have cancer. His PSA was 30 and he was PIRADS 4. We were entirely ready for the worst, but were hoping for contained, we got a nice surprise. 


You won't know until you know. 


My very best to you and hope you can settle a bit while you wait.


Kindest regards 


Janet

Edited by member 22 Dec 2018 at 12:20  | Reason: Not specified

User
Posted 22 Dec 2018 at 12:22

Thank you Janet. So pleased for your husband - wonderful news. I guess the PIRAD 4 may have been in the transitional zone rather than the peripheral zone, which can make a difference. Either way who cares for you guys - brill! It helps my mind to know there might still be a smidgen of a chance even with the PIRAD 4 score.


Haig

User
Posted 22 Dec 2018 at 17:37

John, don't shout at me for this next question, but if I am diagnosed with PCa (I can hear you sighing), I am already worried about recurrence rates, which I see are at around 30%. Does this worry you in your case and if not, why not?


Best,


H

User
Posted 22 Dec 2018 at 18:18

Hi Bob. Did you see my latest question? How do you deal with it?


H

User
Posted 22 Dec 2018 at 19:55
Hi H

To be absolutely honest although i have briefly thought about the chances of reacurrance i am not worried.

As you stated the is a 30 percent chance but that also means that there is a 70 percent chance that i will be clear after treatment.

From what i can gather from your posts is that if you get the worst outcome i.e. you do hav PCa you will be going down the RP route, I have made my decision and have opted for HT/RT.
Like you i am new to all this and the consensus seem to be that if you go for RP and it reacurs you can then have RT after, wereas if you have RT and have a reaccurance you can then not have surgery, this does not bother me as i do not want surgery to start with.
I am assuming, and there may be further post to correct me, that if i get a reacurrance after RT I would be able to have more RT or they can control it with HT.

In a nut shell the answer to your question is i have accepted i have PCa i will do what i can to treat it but i am not going to get stressed and let it ruin my life. I just wish that you were able to adopt the same philosophy.

Bob
User
Posted 22 Dec 2018 at 20:07

Thanks Bob - I get all you say. I am not certain I can ever get to a stage where it isn't ruining my life. Indeed, I will go further and say that if I did not have my wife and son then I would not wish to continue with life per se. Sounds dramatic, but this is where I am at. I'd love to snap out of it and be positive like people I know tell me to be, but I can't - it's alien to me to be positive when my life bubble as been burst.


I sort of began to feel "okay" about it all when I read the survival rates for localised PCa (5 years nearly 100%; 10 years 98%; 15 years 95%), but I don't think these percentages can possibly be factoring in the recurrence element and the potential for spread and metastasis. I just know that the level of stress will never subside in the knowledge that every 3 months or 6 months, whatever it bloody is, I have to find out if my PSA is still undetectable.


F it all.


H


 


 


 

User
Posted 22 Dec 2018 at 20:16
H

Just a quick P.S. I play golf with a guy who had it about 15 years ago, he is 83 years old and moves around the course quicker than I do 🏌🏻‍♂️🏌🏻‍♂️
User
Posted 22 Dec 2018 at 20:22

Cool. I apologise for being Mr Malcontent on almost every post - people have tired of me and I don't blame them. This forum though offers a certain solace because I am only interested in speaking to people who are going, or have gone, through this. Others do their utmost to empathise, but they can't - I wouldn't be able to. 


Did you see Janet's post? PSA 30 and PIRAD 4 and still got the all clear; I should be so lucky....but I won't be.


H

User
Posted 22 Dec 2018 at 20:38
You are just like my wife the eternal pessimist!!!

I know where you are coming from though about hearing the experiences of those who have been though this or are going through it and trying to make decisions.
I do find most of the post biased to going with one treatment, but that just may be my view of it.

I hate to say this but I very nearly posted a couple of days ago to have a go at you to stop whinging and man up but I had to remember that I was very tired due to my HT and we are not all the same.

Whatever the outcome I’m believe the majority of the people on this site are not the type to tire of you and want to help you through this.

To be honest I find replying to your post help me, as talking about it is what gets me though it.

Bob
User
Posted 22 Dec 2018 at 20:53

I didn't think I could possibly be helping anyone on here! I would not blame you or anyone if they told me to "stop banging on and to man up". I am sure many have bitten their lips on more than one occasion reading my incessant brand of morbidity. Hearing my crap, when I am yet to be properly diagnosed requires people to be ultra-tolerant of me. I think I will ultimately go one of two ways - decide to say f..k it and just get on with it in the way you, Chris, John and Luther sort of tell me to or I will wither away.


I guess it takes all sorts and I am at the wrong end of the "man up" scale. I wish you all the best, Bob, I really do and I thank you for taking the time to reply to me. Okay, need to stop moving into my other mode - soppiness.


H


 


 

User
Posted 22 Dec 2018 at 21:44

How is your wife and son coping ?

User
Posted 22 Dec 2018 at 21:57

Wife has been a rock, despite me being a piece of grit. Son is holding up, although he'd never seen me cry before and I lost it when he came back from Uni last weekend. It is for them that I must pull myself together - this might not be fair on me, or anyone else who I utterly respect on this forum but it is not fair on the two people I love in this world to see me like I am. So kind of you to ask & bless you for doing so.


H

User
Posted 22 Dec 2018 at 22:01

Haig - we’ve a few things in common.  Firstly, I'm 48, you’re 50.  Both too young to have PCa.  Life’s not fair sometimes.  Secondly, I had my surgery at the Royal Berkshire.  Thirdly, we are both in teaching.  I’m a secondary head.  Just remember, when it comes to treatment and recovery time, you come first, not the kids at school.


Ulsterman

User
Posted 22 Dec 2018 at 22:06

Maybe we should meet sometime? I agree with your words by the way.


H

User
Posted 23 Dec 2018 at 03:28

H,


My PSA is undetectable in four tests six months after my surgery.


If and when I have detectable PSA that rises over several tests, over months or years, and breaches the 0.2 official level for biochemical occurrence, I will have a choline or G68 PET-PSMA scan to determine the exact location of any metastases, and then highly localised radiotherapy to destroy them, that’s if I elect to have any treament at all. One oncologist suggested hormone therapy for recurrence  (= chemical castration) for up to two years, which I am not too enamoured with.


As for prognostication tools - the Memorial Sloane Kettering Nomogram is the one they all seem to use, you could always book a reading with Mystic Meg or Gypsy Rose Lee on Blackpool Pier. The fifteen-year recurrence rates are based on up to fifteen year-old data, and medical science, particularly in this field has moved on tremendously. Moreover, I don’t think they factor in the skill of any surgeon, and I happen to think I had one of the best in the country, as evidenced by my virtually pain-free surgery, rapid recovery and 100% continence.


So, no, I am not now anxiously awaiting the result of my next PSA test, whenever I get round to having it in the next couple of months. I have been chilled about the whole thing since the start a year ago, which may be difficult for some here to believe. My G score is 7, intermediate agressive, not 9 or 10 very agressive, and it’s my belief that any secondaries will be the same score, as offshoots of the original cancer.


One silly oncologist told me I am cured, and another, more of a realist told me, ’It won’t kill you’. So I guess they’ll have to put something else on my death certificate. I’m only bothered about the date written on it!


So enjoy your Christmas as much as you can, and look forward to the New Year, when all will be revealed - or not!


Cheers,  John.

Edited by member 23 Dec 2018 at 05:24  | Reason: Not specified

User
Posted 23 Dec 2018 at 07:13

Thanks John. 


H

User
Posted 23 Dec 2018 at 07:42

Oh, good morning by the way.

User
Posted 23 Dec 2018 at 12:36

Originally Posted by: Online Community Member


Thirdly, we are both in teaching.  I’m a secondary head.  Just remember, when it comes to treatment and recovery time, you come first, not the kids at school.


Ulsterman



We have teachers in our family a vice principal ( great teacher ) and a cousin who is an alcoholic for best reasons known to himself. He is a train wreck of a teacher who keeps losing jobs for obvious reasons. No one wants  their children taught by a train wreck as it is their future at stake and it behoves you to take responsibility and do what's right for them whatever the reason if you are not at the top of your game.


I believe Ulsterman you have taken a sabbatical which is good news for you and probably your pupils. Maybe Haig should consider the same. At least you are in the fortunate position that you remain on full pay for some time. Of course your health comes first but you do need to think of the children and not just muddle through.


 


Best regards


Ann


 

User
Posted 23 Dec 2018 at 12:44

Ann,


I am not sure what I should do. The kids adore me and I'd hate to be a shadow of myself in front of them. I also live within the school, and just sitting around feeling somewhere between mildly suicidal and watching Homes Under the Hammer while life here goes on, is probably not the best approach for me. I think I need to go on teaching, even as I have the final diagnosis and then await my operation. Thereafter, I will take a little time out, probably going down to my mother's before I get back to have catheter removed and find out that first PSA result. 


I don't think a sabbatical will ease my mind-state at this juncture.


H

User
Posted 23 Dec 2018 at 15:50

Does your Principal know of your situation. If so how are they supporting you?


Only you can know how much your worry is affecting your work or do you find it takes your mind off it.


As you have convinced yourself you have cancer before diagnosis maybe some CBT would help although it is probably too late to get that organised before you do know one way or the other. At least you do not have much longer to wait. I would say try to have a lovely Xmas in the meantime as others have but you do not seem able at the moment to think positively.


Best wishes


Ann


 

User
Posted 23 Dec 2018 at 16:16
Blimey H not even had you results yet but already half way through your treatment 😂😂
User
Posted 23 Dec 2018 at 16:21

Thanks Ann. No. I am seriously thinking about taking my own life - only my family stops me from doing this.


H

User
Posted 23 Dec 2018 at 16:23

I know Bob. If only I hadn't read the recurrence stuff, I think I might have been able to handle this. 


H

User
Posted 23 Dec 2018 at 16:25

Bob. Can I ring you?

User
Posted 23 Dec 2018 at 16:37

Sorry Bob, that was wrong/unfair of me to ask you. 


H

User
Posted 23 Dec 2018 at 16:40
Have Pm’d You
User
Posted 23 Dec 2018 at 16:46
H.

Sign out from this forum stay off the internet, have a couple of glasses of wine with your wife and son enjoy Xmas and stop worrying until after the festivities because you will not die between now and then.
User
Posted 23 Dec 2018 at 19:59

Haig, please in the nicest possible way “get a grip” you will be no good to your wife and son if you take your life.


you don’t even know what the diagnosis is yet, and theres a chance it isn’t cancer. If it is cancer, there is things that can be done. 


I completely understand your worry and stress, this thing is life changing, but from what you’ve said, if you do have localised cancer, there’s lots to be done, look at the many courageous men on here that have been given this diagnosis and are now getting on with their lives.


Come on Haig, yes it’s a shi* group to join, but if you have to, it’s not the end.


Please keep going, for the sake of your wife and son.


xx

Edited by member 23 Dec 2018 at 20:00  | Reason: Not specified

User
Posted 23 Dec 2018 at 21:45

Bless you.

User
Posted 23 Dec 2018 at 22:00

Originally Posted by: Online Community Member


 


 


 


I am seriously thinking about taking my own life - only my family stops me from doing this.


H



 


Ring the Samaratins if you need to talk to someone other than your family/ friends.

User
Posted 23 Dec 2018 at 22:14

I have calmed down because I took a drink and I do not drink. It was a gift from a teaching colleague "a bottle of Haig whiskey" - for a non-drinker, the glass I had was a little too big. It took a while, but then it hit me and I felt great and s*** at the same time; better than just feeling the latter every day. My wife went mad and I feel sorry about that (I have since sobered up, this was a bout 5 hours ago). I then had a good chat to my son and he basically told me to pull myself together because the way I am is not worthy of me & although he wasn't showing it the whole thing was really affecting him.


Haig


 

User
Posted 24 Dec 2018 at 04:26
I recently saw a sign on Facebook or somewhere on a high bridge, I think in America.

It said: “Suicide may relieve your pain, but then passes it on to others”.

A neighbour opposite me took his own life, leaving a widow and three young lads. Very sad. But then he was a Coventry City supporter, so probably had more excuse than a raised PSA test result!😉

Perhaps you should take up drinking for the festive period, only to go back on the wagon by way of a New Year’s resolution. You’ll look bloody silly if you get the all clear or a G3+3=6 or G3+4=7 result.

Best Christmas wishes to you and the family.

Cheers, John.
User
Posted 24 Dec 2018 at 06:05
Haig

90% of things people worry about never happen.
Enjoy your Christmas with your family and wait for your diagnosis as you can do bugger all till it arrives.
Stay strong fella, I've got Chemo session 5 this morning so had a great early Christmas Day with the family yesterday, they did me proud.
User
Posted 24 Dec 2018 at 06:11

We all react in different ways when we get information that we find hard to cope with, keep of the drink that's not the best way just focus on all the positive things in your life, wait until you get all your results in then decide what treatment you need if any. My own experience was to take each day as it comes, some days you feel sorry for yourself but most of the time you just get on with it. 


 

User
Posted 24 Dec 2018 at 06:22
I probably won't help much, but I have got through 5 years of worry following emergency bowel cancer surgery and stressed out before every blood test, scan etc. But it became a little easier as the time passed and now I have my last consultation early Jan. You might find some very sympathetic nurses who will let you know the results of tests as soon as they arrive, and/or ring the lab to get them. My Dr rang me one night about 9.30 to tell me some good news. So these people do exist!
I developed prostate cancer just as the bowel cancer reached the 5 year mark. Intermediate favourable, and start Radiation early Jan. I'm worried of course, but trying to convince myself that worrying is a waste of energy. I've got shingles too, not nice.
All the best for Christmas etc.
User
Posted 24 Dec 2018 at 07:22

Originally Posted by: Online Community Member

I developed prostate cancer just as the bowel cancer reached the 5 year mark. Intermediate favourable, and start Radiation early Jan. I'm worried of course, but trying to convince myself that worrying is a waste of energy. I've got shingles too, not nice.
All the best for Christmas etc.


Some people get greedy for diseases and are a drain on the NHS! 😉


Wondering if I should pay £100-odd for a shingles inoculation. My mate had it quite bad in his early forties. Herpes zoster virus - cold sore, genital herpes, human papilloma virus (penile and cervical cancer) are all variants. Vaccinate against the b******!


Enjoy your Christmas and best of luck for the New Year!


Cheers, John.

User
Posted 24 Dec 2018 at 09:56

Thank you everyone. I am leaving to go to my mother's today. No internet access, so no more me, I'm afraid. 


Again, my thanks to you all for trying to help me.


Haig

User
Posted 24 Dec 2018 at 18:43

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member

I developed prostate cancer just as the bowel cancer reached the 5 year mark. Intermediate favourable, and start Radiation early Jan. I'm worried of course, but trying to convince myself that worrying is a waste of energy. I've got shingles too, not nice.
All the best for Christmas etc.


Some people get greedy for diseases and are a drain on the NHS! 😉


Wondering if I should pay £100-odd for a shingles inoculation. My mate had it quite bad in his early forties. Herpes zoster virus - cold sore, genital herpes, human papilloma virus (penile and cervical cancer) are all variants. Vaccinate against the b******!


Enjoy your Christmas and best of luck for the New Year!


Cheers, John.


 


Thanks. And best wishes to you too! i forgot to mention the mesh repaired incisional hernia, two wound infections, cellulitis and open surgery to remove my gallbladder. There is a medical word for the latter, but I can't spell it. All in the last 5 years. I agree, I am being a bit greedy. 


User
Posted 25 Dec 2018 at 18:07

Hello. I'm back - mum was lovely, but needed to be with wife and son. A belated Merry Xmas to you all.


Haig


 

User
Posted 26 Dec 2018 at 16:05

My worry now, as I continue to sit around like a blubbering zombie (tearfulness comes and goes), is how I will react on January 8th. My PIRAD 4 score pretty much confirms it all anyway, but as much as I am expecting it, I still cannot see a way through the smog. If I get a favourable Gleason, that might help me by about 1%, but I spend much time reading different posts on here from so many brave people who fight this s*** disease. As all can see, I am not one of the brave. 

User
Posted 26 Dec 2018 at 16:21

No you are not one of the brave at the moment. I am beginning to wonder if you will be ok if you get the all clear anyway. I am a bit puzzled as to why you saw your mum on your own yesterday????


Best wishes


Ann

User
Posted 26 Dec 2018 at 16:31

Hi Ann. I realised the pain I was causing wife and son - I thought they needed time away from me. But although initially it felt a bit better, I missed the two people I love more in the world (although I do love my mum, of course). I needed to come back. There will be no all clear - PIRAD 4 in PZ would only give that to a lucky little bunch. That is not me. I think I need to leave this forum because I am not worthy of it and people must despair when they see another of my pathetic posts.

User
Posted 26 Dec 2018 at 17:32
Haig

I am sorry you are struggling with this. Uncertainty is not an easy thing to deal with. The first thing to remember is that until you have the results, you don't know anything for sure. The second is that you are in the system now and being looked after. What that means is that you will get the right treatment and the right time for whatever condition you are in. Statistically your odds are good as PCa is far less of a challenge than many cancers as a whole.

You need to remember that there are a whole series of curative treatments that start the game. The odds are good that you'll be down one of these paths and will "only" have a few scars and other side effects to remember this period by. Beyond that there are a whole host of treatments that can be used to follow up any early challenges.

The key is to get on top of things as much as you can physically and mentally (diet, sleep, exercise etc.). May I also suggest two things:

1) Seek out a qualified counsellor (ideally one who has cancer experience) to talk all this through. I suspect you will find they can help with your current fears and help you figure out why they are so intense. They will be able to help you develop coping strategies.

2) Get off the bl**dy internet! You are not alone in delving into the research to see what may lie ahead. The problem is that we are not medical professionals and it is proven fact (I found this out doing my thesis) that we over exaggerate things when doing our research. If you have questions, direct them to someone in the know, be that your medical professional or a PCUK/McMillan nurse.

You are in good hands in the NHS and they will do their nest for you. In the mean time, take it one day at a time and focus on your family - enjoy your time with them and enjoy Xmas.

Regards
PP
User
Posted 26 Dec 2018 at 17:34

I think you need to seek help from a health  professional asap as it does not seem to matter how much people try to be positive  on here  you do not seem to believe them given your state of mind.


If you truly love your family as much as you say you will seek help before your results. Have you told your mother how you feel?  Do you have any siblings you can confide in?  Please seek help as people on here might begin to wonder if you are genuine. Why would your family not go with you to your mother's on Xmas day. I would find that hard to fathom if you were my husband?


You need to do this for your families sake same as much as your own.


Best wishes

User
Posted 26 Dec 2018 at 17:40

Pete. Your words are lovely. I have seen your own struggles in working through various older posts on here. You had your RP and then had to have SRT and I can only marvel at the way you handle things. But that's just it - I can see what I should do, but am in an inescapable hole of mental pain. Others have also said I need professional help and maybe I can ask this when they tell me of my cancer in January. I am planning also to go down the RP route, but although I questioned my MRI scan (this is how I found out of the PIRAD 4) and the consultant said it was contained - how does he know for sure? Even if it is, I will likely get a high Gleason and worry incessantly about recurrence. I also don't know what I'd do, if, like you, I had gone through RP to be told it didn't work.


I thank you for replying to me - it means masses to me and I sit here waiting for one of the brave, humble people to try to give me some encouragement. 


H


 

 
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