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PSA 7.3 - referred to urologist

User
Posted 03 Jan 2019 at 17:58
H.

You stay on here so I have someone to whinge to when I fell s**t from any side effects.

Bob

User
Posted 03 Jan 2019 at 18:10

Happy to oblige. Anyway, I am not considering my result as being all clear, so I am likely to pipe up and get people screaming at me for a little while yet.

H

User
Posted 04 Jan 2019 at 19:10

Haig

I would suggest you are as "all clear" as anyone can be.

If you have concerns, agree a schedule of PSA tests with your GP and move on with your life.

Have a search on https://www.counselling-directory.org.uk/ for a counsellor near you, possibly one that has a skill in cancer related counselling (find one in the refine search) and go chat to one when you need to. Go chat to one soon and keep them in your back pocket for when test time comes around if you take that path.

To quote the gentleman from "The Life of Brian" - "You lucky, lucky b*stard!"

PP

User
Posted 04 Jan 2019 at 19:45

Hi PP. Top man, as per usual and the advice is good. I know I am a lucky b'tard right now and it is insulting to others on here for me to start bleating on about my interpretation of how "all clear" am I etc. I get all that and I literally cannot believe the patience people on here have for me. If I had Pca at this point and was hearing someone like me banging on incessantly like an educated baby, then they would seriously have p****d me off way back; some have probably reached that conclusion, but others persist in trying to help me. I would blame no-one for thinking that this whacko has had enough of our air-time and needs to bugger off.

The cancer nurse phoned me today to tell me what I already knew from the results, although she also knew that I knew via urologist (who rang me a couple of days ago or whenever it was). I kept her on the phone longer than she had anticipated (as you can imagine), quizzing her like some maniac about what level my next PSA would need to be not to have to go through Biopsy 2 etc. & suggesting to her that I might not go through with the follow-up anyway. She was so sweet and again, here am I, having as good a result as I could have had basically at this juncture, wasting her time when she has to tell men from their first biopsy that they have Pca and then talk to them about treatment plans. I continued though, asking why any inflammation might have subsided in 3 months and that the PSA was just some vague test that everyone knows is seriously flawed. In the end, she has enough and said it was "my choice" and nobody was going to force a needle into me. So, I agreed to see the Uro in 3 months but kept the option of just talking to him and not necessarily having the PSA.

She too, like so many others talked of me needing counselling, but I cannot see a counsellor telling me anything that will reduce my pathetic anxiety and have me waltz into the 3 month follow-up with a smile on my face urging them to take as many PSAs as they bloody want. I know the score, I don't need anyone to "keep me sweet" for next 3 months.

I don't know, many will just begin to (if they haven't already) see me as insane, but I think I am able to get through these next 3 months and make a decision thereafter. Weirdly, I was better mentally for a while and believe it or not I am better now. I just don't sound like it!

I wish that this whole PSA / Biopsy thing could be more conclusive, but it ain't like that. It seems like you are never able to be told that "all clear" means "all clear". Then it's TRUS rather than TEMPLATE and therefore less accurate, RP or AS or HT, Free PSA, PIN, atypia etc. the anomalies go on and on. 

Don't know if you have had the patience to read this far, but I'm not mad or deranged, honest, I'm just a big baby who cannot face up to any of this very well - that's all.

I am not being disingenuous when I say this, but I wish I could have the heart and soul of all others on here, in the meantime I'll go fetch my dummy and hop back into my pram.

Cheers Pete,

Edited by moderator 04 Jan 2019 at 20:06  | Reason: Not specified

User
Posted 04 Jan 2019 at 20:03

Are your family ok with this state of affairs or are you driving them round the bend,? I do feel for them.

User
Posted 04 Jan 2019 at 20:13

Hi Peggles,

I tend to save my real manic rants for you guys, I'm afraid. As you know, I did perk up (long chat with son - now returned to uni + chemically induced) after hitting the low point following the MRI result and Biopsy, but I am conscious of the fact that I need to hide my fears from my dear wife - she has been subjected to too much already. She is like most on here, strong and telling me that it is a curable/treatable cancer (this was before my 'all clear') & now "what more do you want?" after the result was phoned through. She says that I should not be feeling sorry for myself when kids have leukaemia, or soldiers lose their young lives in warfare, or others have more serious cancers. I mean what can I say? Not much, so I don't and I pretend to act as though I am coping. The problem is she is beginning to believe that I am better and now won't give me my medication! Sort of shot myself in the foot there.

Cheers Peggles,

h

User
Posted 04 Jan 2019 at 20:22

...oh, and my dog seems to be coping okay with me, although he is beginning to look pissed off by my numerous "fag stops" on our walks through the woods; I promised myself this would be my last pack, so he should be getting more uninterrupted strolls soon (9 left in pack).

H

User
Posted 04 Jan 2019 at 21:52
Oh, for Heaven’s sake, Haig, I don’t mean to be rude, but this is getting quite frankly ridiculous. You’ve been given the all-clear. What more do you want? You do not have cancer, so stop wasting your life worrying about a non-existent problem and get on with living. Do you see those of us who, unlike you, actually have cancer, moaning about it? You don’t, do you? We get on with the twin goals of getting treated and enjoying life.

Let me tell you, my friend: being diagnosed with cancer (two different sorts of cancer in my case) makes you realise, with a clarity that nothing else can, just how precious life is. Far too precious to sit around complaining about stuff you have no control over.

So for God’s sake stop bloody stressing about something that you don’t have, count yourself fortunate that, unlike us, you don’t have it, and starting living your life again.

Chris

User
Posted 04 Jan 2019 at 22:14

Chris, you are not being rude at all. You are being anything but & I know I am being ridiculous. I thought you'd given up speaking to me, and I quite frankly wouldn't blame anyone, particularly you and others who have tried so hard to help, for deciding to ignore me. However, the fact remains that if I didn't have cancer there would be no need to have a follow-up test. It would be a simple case of au revoir & merci mate. 

I am bright enough to know though that I have gone too far on this forum and my posts are now viewed as nothing short of risible. I shall leave everyone alone from here on in, because I have eventually begun to annoy myself for the way I am on here.

Thank you Chris for being someone who has put up with me. 

H

User
Posted 05 Jan 2019 at 05:44
I've been following this thread from the beginning, hoping it might be some help as I start my radiation on Monday. It hasn't helped but it is compulsive reading! I've had emergency bowel cancer surgery, a large mesh repaired hernia, wound infections, cellulitus, gall bladder out and now a prostate cancer diagnosis, (3+4=7) , hence the radiation for 20 sessions. All in 5 years. I have felt very anxious and fed up at times, I have seen two councellors but I'm hoping the PC is the final problem. All I can write is that I would have loved to be told that my test results were all clear, but many of them were not. So, best wishes Haig. I hope you can soon begin to enjoy life and maybe encourage people on this site who are less fortunate than you.
User
Posted 05 Jan 2019 at 10:03

Okay, brief, appearance because I cannot NOT reply to someone who is offering "best wishes" despite all the serious s*** you have been/are going through. Dunniz - one word, "respect". Sounds clichéd, but it doesn't even get close to how I'd sum up what I feel for individuals like yourself. 

I remember Luther, on here, one day saying that all of this would eventually make me into a better person; I'll let people know if that day ever comes.

Thanks to everyone,

H

 

 

User
Posted 05 Jan 2019 at 10:38

Haig, I really don't think this is a good place for you to be. It's just keeping your fears alive 

User
Posted 05 Jan 2019 at 11:09

I also think this is not the site for you. You may be better served with a site for people with anxiety disorders. Of course if you still persist with the ideation that you have cancer you may wish to consider giving up your fags as you are probably more likely now to get lung cancer or one of the many illnesses caused by that. My cousin is about to undergo vascular surgery due to his smoking   and could lose a leg.

There is literally hundreds/ thousands of diseases that can befall us so why are you fixating on a disease you do not have. God help you if/when you do get one to worry about. As others have said you need to see a mental health professional to deal with your problems. We are not  psychologists on this site.

Best wishes for the future anyway as you obviously do have problems  although they are not medical.

Edited by member 05 Jan 2019 at 11:15  | Reason: Not specified

User
Posted 05 Jan 2019 at 12:59

He is a school teacher, and via private message I asked him: “How do you get a point across to a particularly thick and unreceptive pupil?”

I told him to keep taking the tablets and seek assistance for his psychological issues that were apparently triggered by a potential PCa diagnosis, yet still remain despite his all-clear.

I wish Haig all the best, and hope he gets himself sorted soonest.

Cheers, John.

Edited by member 05 Jan 2019 at 14:34  | Reason: Not specified

User
Posted 05 Jan 2019 at 20:24

I probably have to agree, but I miss the people and I miss posting. Love to all.

H

User
Posted 06 Jan 2019 at 09:56
Haig

It is a counsellors job to listen to you and help you deal with your negative thoughts. I would strongly suggest you see one as soon as you can because it is your thoughts that are causing you issues not a disease you do not have. They will be able to help. It is what they are trained for. Don’t forget that others are affected by your situation and you will help them as as yourself if you seek help.

PP

User
Posted 14 Jan 2019 at 14:31

Hi Haig - I was in the same position 3 months ago and, in fact, in the same position now! I have a bunch of urinary symptoms with no issues at night and my mind is torturing me far worse than my body. mpMRI for me was PI RADS 3 and my PSA 0.7. I had another mpMRI last week and get the results Friday as the Urologist wanted to be thorough and because I have a 'firm' prostate on DRE and Prostatitis symptoms.

When I saw him first after the MRI and a CT scan of my abdomen he told me if it was his prostate he wouldn't biopsy. I suspect this week I will find I will need a biopsy as the symptoms have not changed at all.

I know where your mind is racing to - I have done the same a lot! Missed diagnosis, low PSA means nothing, MRI's missing things, CT scan not reviewed properly etc...and I have been treated for stress too.

Your results are great, but of course there is always the 'what if'. I have decided to do my very very best to ignore the what if voice in my head and try to just carry on. With urinary symptoms I am constantly reminded during the waking hours but keeping busy really helps.

I have no idea what is in store for me yet, but wanted to add another voice to 'you are not alone' crowd with this. The tests, waiting, diagnosing, then 'equivocal' results, then waiting, more tests etc...it takes its toll. Try not to be too hard on yourself and also consider that you are suffering a kind of PTSD which is why you may continue to doubt the diagnosis. You are re-living some of the painful thoughts again and again...it is a vicious cycle.

Many have said it, try to move on, and sadly (I am 51) as we age we are more prone to nastiness in all its forms, but a good friend of mine suffering from Lymphoma tells me to take one step at a time, not to try and predict or put odds on survival! Learning to accept uncertainty and even to accept the entirely natural event of one's own demise is something we humans have made a pigs ear of in the last 100 years!

Take care now,

Mark

User
Posted 14 Jan 2019 at 16:47

Hello Mark,

Thanks for your post. It resonates loudly my end. I have stayed off the forum for a while now because people had become understandably tired of me. They could also see my mental demise and to be frank, I wasn't doing anyone any good (& I include myself in this) by posting on here, particularly after my "all clear".

But yes, the doubts remain. I have now been told that I don't need a PSA re-test for another year, but that I can have one at any time 3 months after biopsy (I had MPMRI then targeted TRUS 20th Dec). I am better mentally, but I feel that I cannot find any proper peace of mind and the anxiety flares up at various points. I too have the urinary issues persisting (some days needing to go a lot or "fullness"/other days normal), although again, I often feel that these are fuelled by anxiety - chronic or acute. Never any issues at night. My biopsy, showed inflammation, either minor or moderate etc. which the urologist said could explain my "water works" issues and the elevated PSA of 5.9 due to "some element of prostatitis". Hardly the most convincing diagnosis, but I am clearly grateful that it was not PCa. The thing is, I don't get pain from my apparent "prostatitis" apart from a bit of burning sensation after peeing. I have read that prostatitis tends to have pain in pelvic etc.

As people know on here, I self-diagnose and read way too much & it has done nothing but damage to my mental make-up. 

So, here I am, best keeping off this forum (which I will do) and doing my best to get better.

Haig

 

 

 

 

Edited by member 14 Jan 2019 at 18:08  | Reason: Not specified

User
Posted 14 Jan 2019 at 17:10
Howard,

Nice to see you back here again with your imagined illness. You are always welcome.

Most men here would love to be in your position, free of cancer, but with what I call ‘a bit of trouble down below’.

Have you seen a doctor about your hypochondria yet?

Best wishes, as ever, and kind regards.

Cheers, John.

User
Posted 14 Jan 2019 at 17:49
Post as much as you like Haig!! It’s a free speech forum , and it’s your own thread , and if people get fed up then they can just stop reading can’t they.

Best wishes

If life gives you lemons , then make lemonade

User
Posted 14 Jan 2019 at 18:28

Chris & John,

Hello again. Chris, I feel that I have very much "outstayed my welcome" on the forum and I get that. I have been given an "all clear" and that, in many ways, should signal a "clear off" on my part. I hope to move on mentally, and in certain ways I have, but I still do not understand why people (& I include family) will not entertain the possibility of a false negative. Anyway, I will stop my postings (right now, it is better for me mentally to keep away) and only really came on to acknowledge your replies; both of you have always been a major support in your different ways. I hope to one day help out in a tangible way myself - I am hoping to set up something in the future to raise money for Pca by doing something whacky that parents can sponsor. Right now though, I still have that "what if" voice Mark talked of periodically gnawing away and at certain moments just think that the "all clear" was nothing other than a 'stab in the dark diagnosis'.

John, no, I am yet to see the GP, although as I say, I am in a better mental state in the main, although it may not appear so reading this!

Best wishes to all of you and hey, West Ham beat Arsenal on Saturday, so I have to allow myself some joy!

Haig

Edited by member 14 Jan 2019 at 20:03  | Reason: Not specified

User
Posted 15 Jan 2019 at 17:26

Hi Chris. I am not making a comeback, or indeed having my obligatory wail, but just wondered about the blood in semen time span? It's been 3 & a half weeks since biopsy and has 'evolved' from darkish ketchup red to Worcester sauce brown. Any idea when things might get back to the correct colour palette?

Hope you are okay and that '19 treats you well. 

H

User
Posted 15 Jan 2019 at 17:59
Haig

Once its gone brown the more you get rid of the quicker it will clear. Just keep on getting rid.

Cheers

Bill

User
Posted 15 Jan 2019 at 18:13

Thanks Bill. Much appreciated.

H

User
Posted 15 Jan 2019 at 18:25

Thanks guys that's helped, HB had  go at "clearing the pipes" 5 days post biopsy, expected a rose tint but got ketchup red!!! 7 days post biopsy now rust red!

User
Posted 16 Jan 2019 at 09:57
Brown is old blood and nothing to worry about.

Cheers, John.

User
Posted 16 Jan 2019 at 11:04

Thanks John, as always.

H

User
Posted 21 Jan 2019 at 19:15

Originally Posted by: Online Community Member
Post as much as you like Haig!! It’s a free speech forum , and it’s your own thread , and if people get fed up then they can just stop reading can’t they.
Best wishes

Well said Chris. Ive just read this thread and was quite disaspointed with some of the responses to someone who is clearly very anxious. Others have provided great support which is what it is about. We are not all surrounded by people who want to hear our woes. So sometimes people post on here as a safe outlet. Been there, got the t-shirt. Like you say people can choose to read posts or stop reading if they are not happy.

Bri

User
Posted 21 Jan 2019 at 20:37

Thanks Bri. I appreciate your words, but I think I would have to say that pretty much everyone has been supportive of me on here in their own way. I think I became almost manic with anxiety through waiting for each set of results -  everyone has been through it, but all seem to have handled it better than me. There was nothing anyone could say to reduce my apprehension and stress; I think people were right to lose faith in trying to help me - they had all tried hard enough, despite me not even having a final diagnosis. 

Then I got the news of an "all clear" from my targeted biopsy and yet continued to doubt this result (I still do) - for some, this was too much & I understand why; I get the 'dream result' and yet I continue to question the validity of it, I continue to let stress dominate my life. For some, this was seen as madness on my part. 

I am better now, mentally, but I'd be lying if I said I didn't still doubt my results. I have been advised by uro to have another PSA in a year's time; I reckon he is making a clinically unsound decision in suggesting an entire year. Anyway, I don't have the courage or moral fibre to start this all over again before the year's out, so I'll go with him on this one.

All the best with your own treatment and I am very appreciative of your kind words, Bri. 

Haig

 

 

 

 

User
Posted 23 Jan 2019 at 09:00
Hi Haig

Have you got a counsellor yet?

PP

User
Posted 23 Jan 2019 at 09:26

Hi Pete,

I am currently in a better place, so although I have one in my back pocket, I am coping okay right now. All the best to you and I hope '19 is a good one!

Haig

Edited by member 23 Jan 2019 at 10:14  | Reason: Not specified

User
Posted 23 Jan 2019 at 15:14

Hi Haig

Glad to hear you are in a better place. And a HNY 2019 to you too!

PP

User
Posted 27 Jan 2019 at 20:37

Thanks, Pete. Just a quick one from me to say that I think of the forum exchanges from everyone on here on a regular basis (I still pop in and out) and cannot thank people enough for all they provided me in terms of advice, patience and guidance. I am gradually weening myself off my medication and coming to terms with the fact that maybe I did get lucky after all. I am also in the process of raising money for cancer research and will be making this my goal here on in. I wish everyone nothing but good health and I am humbled by the fact that you all contributed to helping me through my own personal anxiety - my default mode is to be cynical, but here I never felt anything other than warmth and genuine encouragement. 

H

User
Posted 03 Feb 2019 at 17:33

Hi Pete. Wondered if you might be able to advise. I still have light brown semen colour - biopsy was 20th of December. I read 3 to 4 weeks it should return to normal. This is now getting on fo 6 weeks - wondering if this was worth getting anxious about?

H

User
Posted 03 Feb 2019 at 17:49
That’s fine mate. It can take easily six weeks. Don’t worry and practice harder :-))

If life gives you lemons , then make lemonade

User
Posted 03 Feb 2019 at 17:53

Thanks Chris - I hope this finds you well? Yes, I see what you mean by practising a little more regularly....

H

User
Posted 27 Feb 2019 at 18:34

Hi Chris. Hope you are well and have had some fine weather in your neck of the woods? Just wanted to say hi really and to thank you again for all your support through my own prostate histoire (still got light brown semen btw - 9 weeks now, GP still says not to worry about it as it's "old blood", hard not to though for a character such as me), and for bothering to reply to me at all really. I have my 3 month follow up meeting with Uro on 12th March. Not sure what to say to him other than I still worry about false-negatives. I have definite prostatitis symptoms to bore him with too - perineal pain & willy pain etc. (all symptoms have occurred post biopsy on 20th Dec). I have been off the horse-tranquilising pills - Seroquel, for a wee while & have been on Mirtazapine since. Anyway, I'm still around and probably know that I should press for another PSA despite Uro writing to me saying I could wait a year from my last one in November (PSA had gone down from 7.9 to 5.8 in the 3 weeks prior to MRI & subsequent negative result).

Anyway, as you can see, I'm still a wimp and still harbouring latent fears that everyone told me to shut up about! 

All the best - just hope West Ham don't lose too heavily to M. City tonight....

 

 

 

User
Posted 12 Mar 2019 at 12:49

Hi John - hope you are well etc. It's been a while, but thought I would come back and recount the latest. Not sure anyone actually cares given my previous history on here, but thought I'd give it a whirl.

I went along for my 3 month follow-up appt. today.  Urologist said what I expected him to say. Yes, it was possible that cancer was missed and that is why I need to do another PSA to see if my level has dropped significantly enough.

My symptoms of perineal pain etc he thinks are prostatitis (inflammation of prostate - not related to cancer). He has prescribed 6 weeks of antibiotics for this, which I can take when I am “ready" for my PSA. Basically, the antibiotics will normally lesson the prostatitis and give a more accurate reading of my next PSA. Prostatitis in itself can increase the PSA result, which he thinks might have been the reason for my elevated PSA before Christmas.

I need to take the PSA two or three days before I end the course of antibiotics in order to give more chance of an accurate PSA.

He said that I could do this now and have the PSA in 6 weeks’ time or I can hold back and take the antibiotics later and have the PSA towards the end of the summer holidays. He said if there is cancer a few months is unlikely to make any difference to the stage of cancer.

If my PSA is below 3 then he would be happy just to keep having a PSA every year. If it was above this, then he would recommend a perineal biopsy via general anaesthetic (this is considered to be a more thorough biopsy than the TRUS one I had done in December) & probably skip any MRI scan beforehand.

Of course, I was wanting him to say “just get on with your life and forget it ever happened”, which I guess he was never going to say.

I will need to make a decision on when to have this PSA or to forget about it and take my chances. Not sure right now what to do - clearly having the test is the most sensible option, but I am not sure I can endure the merry-go-round that was anything but "merry" last time out.

All the best & I guess my gut feel is that, despite regaining my marbles, there will be no real peace for me either way unless I get this PSA done.

Haig

 

User
Posted 12 Mar 2019 at 13:28
Hi Howard,

Back again? I wonder if psychosomatic stress can actually cause prostate cancer? 😉

If you had had a template biopsy in the first place you probably wouldn’t be where you are today. I was told by two friends with PCa to avoid the TRUS that you had, and a leading oncologist said “the TRUS biopsy is as bad as we thought it was”.

Go with your urologist’s suggestion, monitor your PSA, and be positive.

Do you have a middle name of Thomas (doubting)?

All the best.

Cheers, John.

User
Posted 12 Mar 2019 at 13:36

Yes, I know that the template would've been better, but I wasn't given that option. MRI then 6 days later the call to come in for the TRUS. I guess it all comes down to what so many things come down to - money. It's as if they hope to find Pca with the TRUS in order to save a few bob by not having done the template. Maybe I'm being cynical; it wouldn't be the first time. I guess it's time for some more Panic, Stress & Anxiety (PSA). 

All the best & thanks for the reply,

H

 
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