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Psa300

User
Posted 21 Sep 2018 at 23:46

husband 57. Fit as fiddle 


had hoods taken for MOT. psa. 300! 


No symptoms 


no issues with urinary or erectile no blood no pain 


terrified ! So high 


waiting for app with consultant.   He is ex navy and big, hard uncommunicative guy 


he is also scared but can’t show it 


help,

User
Posted 22 Sep 2018 at 13:13

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Edited by member 30 Dec 2018 at 17:54  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Sep 2018 at 13:03

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Edited by member 30 Dec 2018 at 17:55  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Sep 2018 at 11:45

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Edited by member 30 Dec 2018 at 17:54  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 22 Sep 2018 at 01:53
Did he have a digital rectal examination (finger up the bum in layman’s terms)?
User
Posted 22 Sep 2018 at 07:02

Yes the poor bugger. Doc reckons nottoo swollen but can feel hard area to it 

User
Posted 22 Sep 2018 at 07:53

Sorry to hear that. Needs to push on ASAP with further investigations. Ask if you can get mpMRI scans in your area before they do biopsies and then insist on template biopsies as that is much more likely to find any problems. Good luck

User
Posted 22 Sep 2018 at 11:18

I concur with tonyc. Best practice is an mpMRI scan FIRST, and then a biopsy. If at all possible avoid a TRUS biopsy (again up the bum) and elect for the far more accurate template biopsy (usually under general anaesthetic).


And again, best of luck.


Cheers, John.


Biggest Leap Forward in Diagnosis for Decades


Is pre-biopsy mpMRI scanning available in my area?

Edited by member 22 Sep 2018 at 11:33  | Reason: Not specified

User
Posted 22 Sep 2018 at 11:45

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Edited by member 30 Dec 2018 at 17:54  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Sep 2018 at 12:32
What I wrote was not ‘poor advice’. I said go for an mpMRI FIRST, and then as you say, there may be no need for any biopsy and its potential side-effects.

If there is no mpMRI facility in their area, then they are in the hands of their medical professionals as to the way forward.
User
Posted 22 Sep 2018 at 13:13

Deleted

Edited by member 30 Dec 2018 at 17:54  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Sep 2018 at 13:29

Originally Posted by: Online Community Member


Best practice is an mpMRI scan FIRST........If at all possible avoid a TRUS.........elect for the far more accurate template biopsy

User
Posted 22 Sep 2018 at 14:25
Template biopsy is only "best practice" if there is no obvious target for biopsy or the disease is anterior located (I beleive).

Probably best to let the specialist decide what is best practive.

What is definitely best practice however is for the patient to ask questions like " would it be better for me to have a template biopsy" .

User
Posted 22 Sep 2018 at 15:55

Which is exactly why I took the trouble to look up and post the hyper-links to the PC UK PROMIS results and to the American survey which states that an mpMRI scan can make a biopsy unnecessary.


Not at all ‘poor advice’ for Reenmatch and her husband.


Cheers, John.

Edited by member 22 Sep 2018 at 15:57  | Reason: Not specified

User
Posted 23 Sep 2018 at 00:21

This is a short video with one of my consultants' at the Royal Marsden talking about MRI and biopsy concerning the PROMIS trial. MRI can be be very useful indicator and scans are improving but you you can't place total reliance on them despite what appears to be suggested, as we know from the experience of some men on this forum. https://vimeo.com/169926390


 

Edited by member 23 Sep 2018 at 04:21  | Reason: link problem

Barry
User
Posted 23 Sep 2018 at 02:13
Your hyper-link seems to go to a Google search page about the eminent oncologist Dr. Chris Parker, rather than a specific article, Barry.

My point was that mpMRI can work in two ways to avoid unnecessary biopsy. One, if nothing shows up, you are probably in the clear. Two, if a tumour is present together with a high PSA then PCa is very likely and again no biopsy required, bring on the HT for a start.

Cheers, John.
User
Posted 23 Sep 2018 at 04:06

Strange that worked for me when I checked but here is another way https://vimeo.com/169926390


original amended

Edited by member 23 Sep 2018 at 04:07  | Reason: Not specified

Barry
User
Posted 23 Sep 2018 at 06:26
Thank you Barry, very helpful as ever.

“.........the TRUS biopsy is as bad as we thought it was......there is no way I would have a biopsy before an MRI.......” - Dr Chris Parker of the Royal Marsden Hospital and Chairman, the National Cancer Research Institute Prostate Clinical Studies Group.
User
Posted 23 Sep 2018 at 13:03

Deleted

Edited by member 30 Dec 2018 at 17:55  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Sep 2018 at 15:46
I am very sorry Reenmatch, that your innocent questions about your husband’s PSA have descended into inane internet squabbles about particular diagnostic procedures. I guess that’s the WWW today.

Please read through everything nevertheless, as no-one is lying to you, but as ever, people have differing opinions. Please bear in mind we are all laymen here, and your best bet is to listen to what your clinicians tell you, but also have an idea what they are on about, from this forum.
User
Posted 29 Sep 2018 at 00:15

Blimey!  Well that was a ****storm!


its actually helpful to see the conflicting advice as it means there is no definitive way forward


i do think though as a NHS patient we have very little power!  


I cant insist on any option simply listen and hope our medical practitioners are decent?


best thing that happened today was


MRI done 


and daughter blabbed and told his mates! I wanted to throttle her! As we are ex military, stoic, hard nosed  and private people 


But I guess it’s helpful his mates can now support him 

Edited by moderator 29 Sep 2018 at 09:07  | Reason: Not specified

User
Posted 29 Sep 2018 at 07:11

One thing I would strongly advise would be to speak to one of the PCUK nurses here.  They are so well informed and offer impartial clinical advice as well as being wonderfully understanding and supportive.   They will take as much time as you need and will try to answer  any questions you come up with no matter how daft.  They are also not tied to any particular treatment option so their advice is completely impartial.  The nurses I have spoken to at my hospital are less able to be as open, because as they explained to me, they work eith s consultant who does one kind of therapy.  So they openly admit they may be biased. The PCUK nurses do not have those ties


i spoke to them, they are angels who helped me sort out the jumble of thoughts crashing about in my head and made my decision making so easy


Wish you all the best


Geoff x


 

User
Posted 29 Sep 2018 at 08:28

Good luck Reenmatch, I am also a wife doing the posting as this is not my husbands sort of thing.


With a PSA of 300 your husband is starting from a very different place to mine ( his was 3.56) other than having no symptoms at all so was perfectly continent and no erectile dysfunction at all.


Your MRI ( if it was an MpMRI) should give a PIRAD score. I recommend googling PIRAD to make sure you understand what it is saying. I also believe in asking for a hard copy of the scan results plus a CD of the scan in case you ever want someone else  to look at it. This is me though .. I like full information but others willl advise ‘ do not google’ but we are all different and nothing makes me feel worse than feeling ‘ in the dark’


it all felt better when a diagnosis is given and a plan was in place so this is probably difficult times for you. There is a lot of research on going and a lot of clinical trial successes to take note of.. it helped me to know that.


so just from one wife to another all the best .. 


Clare


 

User
Posted 29 Sep 2018 at 17:06

Originally Posted by: Online Community Member


Blimey!  Well that was a ****storm!


I do think though as a NHS patient we have very little power!..........and daughter blabbed and told his mates! I wanted to throttle her! 



Check out my profile and posts and you will see what the NHS can achieve, with gentle prompting and a little awareness of what’s what on your part.


Why be embarrassed about it? My friend was but he is still going strong at 82, thirteen years later. He’s not “ashamed” any more! He’s proud to be a survivor.


Anyway, your daughter might have done his mates a big favour in encouraging them to get their own PSA tested.


Cheers, John.

User
Posted 05 Oct 2018 at 23:12

MRI 


97 % chance cancer 


67% aggressive 


They don’t pull their punches do they  ........l..Well ! 


It was a 8pm appointment with consultant so that was BAD 


you know if they leave you till last it’s cos they don’t want you blubbing in front of a room full of patients 


GUTTED   


next step local anaesthetic biopsay in five days 


and bone scan.    


He has mentioned suicide Jokingly? 


 


 

User
Posted 05 Oct 2018 at 23:16
I forgot to ask to see scan or ask for hard copy
Too much in shock
Rather than press around
Would it not be best to ask for radical removal of Prostate and be done with it !
Rather have bloody stupid biopsies and waste valuable time ?
Pathology are short staffed and can take three weeks for results
User
Posted 05 Oct 2018 at 23:37

Deleted

Edited by member 30 Dec 2018 at 17:55  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Oct 2018 at 02:53
I obtained a DVD of my MRI scan but I have never watched it, and I could hardly see the tumour when it was pointed out to me on the consultant’s computer, despite it being 15mm in size! I think you have to be highly trained to interpret MRI imaging.

Prostate cancers are usually slow-growing, so don’t be too alarmed at the time scale for diagnosis. I went seven months from raised PSA to surgery, largely due to me getting second opinions and weighing up all my options. I am sure he is in good hands.

Best of luck.

Cheers, John.
User
Posted 06 Oct 2018 at 12:08

A biopsie is the only way to know for what is going on.  I was concerned over the time aspect but was assured by the PCUK nurse that a few weeks is a very short time in prostate cancer terms, not much will change in that time.  I'm now waiting for my op, 7 Nov, a month to go.  There is a bit of me that still worries over this delay despite the advice I've had, I think it's only natural.


one other thought, please bear in mind that you do have the option to choose where you have the op, and who does it, if you are not happy with the person you are currently seeing


all the best


Geoff 

User
Posted 06 Oct 2018 at 13:48

Hi Reenkamp, confusing isn't it! But only if you delve too deeply. 


The NHS has a protocol which they follow, they've handled tens of thousands of PC cases, so they know far far far more than me. 


I followed their guidance, which was


Do another PSA in 3 months


Mri scan


Biopsy, a template one because it showed a potential lesion at the back of the prostate, and going up the bum couldn't reach it. 


Yes it had cancer cells


Told me all options were open to me, watch and wait, RT, or surgery. I chose RT after hormones. 


6 months on, I'm mended!!!! 😀


My advice is to have trust, don't try to second guess everything, just take each step as it comes. 


When we are first told we MIGHT have cancer, we all want to rush and get rid of it. I remember urging my consultant to get a move on, he said we have a protocol which works, so why rush, when you've already had this problem for years  It doesn't work like that. 


It's a long pathway, because you'll probably be put on hormones for three months before any treatment starts. Knee jerk decisions, such as wanting surgery have consequences, which you need to understand. 


Don't worry, we are involved in the decision making, but only when it's appropriate. 


Don't panic, all will become clear, but only when you work through each stage. 


Good luck, be patiient, my treatment from start to end was about 15 months, but it worked. 


 

User
Posted 06 Oct 2018 at 21:44
We have been told by consultant three weeks for path lab to give results .
Is it possible to have quick turn over if we offer to pay for results?
User
Posted 06 Oct 2018 at 22:52

Originally Posted by: Online Community Member
We have been told by consultant three weeks for path lab to give results .
Is it possible to have quick turn over if we offer to pay for results?


I don’t think so. Even if you had a template biopsy privately at around £1500 it still takes 2-3 weeks for the results.

User
Posted 07 Oct 2018 at 09:32
Yes, talk openly to your mates, you will be surprised because you often find one or two who will tell you they were diagnosed 15 years ago, but haven't done anything yet, they just stay on active surveillance and quite expect to die of something else first.
Besides, none of the treatment options are pleasant, even AS could involve biopsies. Be careful what you wish for. They won't do a biopsy until they do the mri, and they won't offer treatment options until the biopsy results. The odds are that he will likely be put on a 3 month course of hormones before they do the agreed treatment.
In reality, there's no rush, neither are there any shortcuts.
In practice we all panic, but soon just get used to it. It'll take many months before he's mended, don't waste a year panicking.
User
Posted 07 Oct 2018 at 11:20

Deleted

Edited by member 30 Dec 2018 at 17:56  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Oct 2018 at 11:38

Mine was like that as well, Lynn, but as soon as the results were available the specialist nurse rang me to update me with the news that it was cancer with a gleason of 7. She also told me that with this score, all treatment options were available. She also invited me to come and discuss the options with the team of consultants in a couple of weeks. I seem to remember being asked if I wanted news as soon as it was available. I can't remember, but I would have said yes. 


That gave me chance to do a bit of research (on here) so I was well prepared for these discussions.


The early news was much appreciated. 

 
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