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PSA Anxiety

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User

Posted 19 Mar 2019 at 22:09

Yes, that's the one Andy. Belmont Industrial Estate. It's reassuring to know you had a good experience there.

I don't yet have a named consultant yet so I'm not sure who I'll be seeing. I'll let you know if it's the same guy.

Cheers, Mark

User

Posted 22 Mar 2019 at 18:34

So I had my Urology appointment today and the consultant performed a DRE. He said my prostate was slightly enlarged for my age, but he could feel nothing out of the ordinary. He has arranged for me to have an MRI at the Sunderland Royal Hospital and put the odds of me having PC at 25%. Depending on the MRI results - he will then discuss the possibility of having a biopsy. Even if I didn't have a biopsy he said it would be prudent to have a repeat PSA test every 6 months. I guess all I can do now is wait for my MRI appointment to come through the post.

Thinking ahead. If the MRI came back negative do any of you think it wise to push for a biopsy? I have read a few times that scans sometimes miss things and a biopsy would be much more likely to detect anything untoward. I understand that a biopsy might not be the most pleasant thing in the world, but peace of mind is very important to me.

I would also like to say that now I have seen a specialist, I'm not as anxious or worried - compared to when I made my first post. The feeling of having something done about it and having that process started is quite empowering. I feel like I have some control back and when I came here panicking last week - I felt no control, fear and completely detached from reality. I don't know how I would have grounded myself if it weren't for all you kind folk on here so thanks again for that. I will continue to update this thread.

Cheers,

Mark

P.S. This is for Andy63. The consultant I saw could have been Mr. SD as those letters certainly go into his name. The chap I saw was very pleasant, down to earth and professional. I felt completely at ease. Thumbs up for the Durham Diagnostics & Treatment Centre. Thumbs down to whoever runs the paid parking as the machine wasn't accepting cards so I had to make payment by phone.

User

Posted 22 Mar 2019 at 19:07

Sounds as if you're in good hands now, Mark. I know there are those here who advocate "demanding" particular tests, but I think personally that creating an adversarial atmosphere with your urologist does no good at all. He's the expert; I'd take his advice on the best way to proceed.

Very best of luck with the MRI!

Chris

User

Posted 22 Mar 2019 at 21:00

Hi Geordie,

it would depend a little bit on what kind of MRI they give you. If a standard MRI then yes, these can miss tumours so a clear scan would not necessarily mean you didn't have any cancer. Also, a normal mRI can show suspicious areas but can't tell the difference between bruising, infection and tumour. If however, you are offered an mpMRI (which uses 3 or 4 different technologies to get an in depth view of your prostate, they can assess how likely any suspicious area is to actually be cancer (in a range of five from 'definitely not cancer' to 'almost definitely cancer'.

A clear normal scan should not necessarily rule out the need for biopsy but a clear mpMRI could possibly be so definitive that a biopsy would be an unnecessary intrusion. County Durham & Darlington NHS trust offers mpMRI to the PROMIS standard; Sunderland NHS trust offers mpMRI but not to the required standard. As CC says, consider the specialist's advice as s/he has had many years training & experience.

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

User

Posted 22 Mar 2019 at 21:02

I agree with Cheshire Chris yet at the same time have learned that the specialists just follow an agreed flow plan whether it suits or not for a particular patient. It is a NICE flowplan and I guess they have to follow it to the T , unless someone in the know challenges their sometimes pointless or useless treatment plan. Yes they offer everything they can in the right order but sometimes in the detriment to QOL and with no total gain to life span. Some people grab it by the horns and others judge it more wisely. When you actually challenge an Onco , they agree they are only following guidelines and that it is up to you. It is your cancer and you own it , and you can choose whatever you want that suits you. You don’t have to nod your head and take what their guidelines say. Some Oncos wouldnt put their own families through it all tbh. My brother who is a fully qualified consultant Radiologist won’t take a psa test despite my journey and to be fair I don’t blame him given what I’ve bedn through for zero results. I’ve recently had a 90 minute research call for PCUK and told them in my opinion a widespread PSA testing program is not right for young men. Such an unreliable test and putting thousands of men through unnecessary tests and strain and worry and procedures when they may not need it. Something more reliable needed !

If life gives you lemons , then make lemonade

User

Posted 22 Mar 2019 at 21:42

Bit of an odd reply to someone who is only waiting for an initial scan, CJ :-/

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

User

Posted 22 Mar 2019 at 22:09

I can’t reply however hard I try. I just resent the “ he’s the expert post “ because they are all experts but treat differently in every region. I believe it’s right to challenge a man or woman Onco bound by guidelines rather than smile and be chemically castrated and just accept it re Cheshire C post. We are not all the same and have the right to question our treatment. When challenged , my Onco agrees RT is practically worthless but is obligated to keep offering it. Others just bite their hands off whatever the outcome. Sorry to waver from the original post ok , but I dislike misguided advice also

If life gives you lemons , then make lemonade

User

Posted 22 Mar 2019 at 22:40

Hi Mark

Not sure if you got my earlier reply?

Personally I would ask for the biopsy, yes a little uncomfortable, bit like stapling your finger! But after the second dart you get used to it, lol

The only reason is because my own journey matches yours to a certain degree, small slightly enlarged prostate, but biopsy confirmed everything. OK I was 54 so slightly order.

Take care,

Andy

User

Posted 23 Mar 2019 at 18:20

Many thanks for all the comments and advice. There are obviously a lot of conflicting opinions here and that's all good. Everything said is representative of making good informed decisions - based on individual personality types and past experiences. For someone like me, these personal beliefs are invaluable. I'm quite agnostic and a very deep thinker. I do frequently overthink things and this will often lead me down a path where I will worry and fixate about stuff. Sometimes this can be a blessing and other times it can be a curse. Striking a balance is difficult, especially when it concerns anything that's health related and even more so; when it's potentially something quite serious. I need to be in possession of the facts and I need to listen to every side of all arguments. This thread has now become an internal debate inside my head and I have no doubt it will eventually lead to making the best decisions that are right for me. I cannot express how much I appreciate the impact you're all having on this process. It means a lot.

As it stands right now. I haven't had an MRI yet and I have not been diagnosed with anything. However, I do not think a clear MRI would give me enough peace of mind to formally dismiss the prospect of potentially having PC. I think a clear mpMRI would have been more helpful in doing that. Thanks Lyn for mentioning this. I didn't realise there were different types of MRI or different standards. I do trust my Urologist and Cheshire Chris raises a very good point about not creating an adversarial atmosphere by demanding particular tests. I also understand that our NHS is stretched when it concerns time, money and resources. The last thing I want to do is become a drain on the system or take valuable diagnostic and treatment time away - from those who may need it more. At the same time I have to consider my own peace of mind and how not having any would effect my life in the future. I think I will wait for the MRI and what comes next, but if that scan is clear, I will have to express my concerns and fears to the Urologist and see if I could possibly convince him to take me down the route of a biopsy. This is not something I would look forward to, but it's something that would give me enough closure, especially after reading Andy's story and feedback. Everything is of course based on a 'what if' for me right now, but it helps to think about outcomes and plan for possibilities and eventualities. I do not want to be caught off guard.

Just touching on what Chris J said about widespread PSA testing not being routinely performed on young men. I would have to agree with this. I only had a PSA test done because of issues with my water works. I think PSA testing at a younger age would create a lot of anxiety and stress for people who generally do not need to worry. I do wish they could develop a more accurate test in the future, although I'm sure this is something that people are working on right now and hopefully will become a reality someday.

Thanks again for all the replies and I wish you all a great weekend.

All the best, Mark.

Edited by member 23 Mar 2019 at 18:29 | Reason: Two people named Chris. Needed to differentiate.

User

Posted 23 Mar 2019 at 18:35

Originally Posted by: Online Community Member

I do trust my Urologist and Chris raises a very good point about not creating an adversarial atmosphere by demanding particular tests. I also understand that our NHS is stretched when it concerns time, money and resources. The last thing I want to do is become a drain on the system or take valuable diagnostic and treatment time away - from those who may need it more. At the same time I have to consider my own peace of mind and how not having any would effect my life in the future. I think I will wait for the MRI and what comes next, but if that scan is clear, I will have to express my concerns and fears to the Urologist and see if I could possibly convince him to take me down the route of a biopsy. This is not something I would look forward to, but it's something that would give me enough closure, especially after reading Andy's story and feedback.

Just a small clarification, Mark. I'm certainly not suggesting that you don't discuss your diagnosis and the best way forward with your urologist; having such discussions is an excellent idea, and the more you know about your diagnosis the better the position you'll be in to make an informed decision should the necessity arise further down the road. It seems entirely reasonable to me to express your wish for a biopsy if the MRI scan leaves even the smallest doubt about cancer.

Best wishes,

Chris

User

Posted 18 Apr 2019 at 11:38

Just thought I would update this thread. Since I last posted; I had an MRI at the Sunderland Royal Hospital and a urine flow test at the Durham Diagnostics & Treatment Centre. I have not heard back from Urology with any formal results from these two tests, but today I received an appointment letter for a TRUS biopsy. I can only assume that they found something suspicious on the MRI? I do feel a little bit anxious about this assumption and I'm definitely nervous about having the TRUS procedure. The BAUS pamphlet they sent lists the odds of all the possible complications. Not good for the occasional worrier like myself. However, I am generally in good spirits about the whole thing and trying to remain cautiously optimistic. I will keep all of you great people updated with how things progress.

Best wishes, Mark.

User

Posted 18 Apr 2019 at 12:01

I would presume ‘something’ suspicious was found in your MRI scan, warranting further investigation, hence your biopsy letter.

What a shame no-one in urology had a few minutes to advise you by phone of their suspicions, rather than a biopsy appointment dropping on your doormat.

Now you can look forward to a wait for the biopsy and then two to three weeks for the results of it. I trust you are a patient man, and anyway, the ‘suspicion’ could turn out to be benign.

Best of luck.

Cheers, John.

User

Posted 18 Apr 2019 at 13:13

A prostate MRI (even with contrast) can't diagnose PC by itself.
It can highlight any areas which need investigating, and it's really good to have had it before a biopsy, because it enables the biopsy to be targeted to the right area. It might be that either the TRUS or a transperineal template prostate biopsy (TTPB) would have been done anyway, but they were waiting for the MRI result first in case it shows specific areas to target, or that one biopsy method is more appropriate in your case. Would have been nice to explain this first though.

TRUS is a bit uncomfortable, but not painful. Most people have no bad effects from TRUS, beyond blood in semen for 3-6 weeks, and blood in urine and rectum for a couple of days.

Edited by member 18 Apr 2019 at 13:32 | Reason: Not specified

User

Posted 18 Apr 2019 at 16:09

Hi Mark

don't worry to much about the biopsy procedure, its not that bad, a little uncomfortable but the guy at Durham was great and explained everything as he went and what to expect.

Normally with SD, you can ring his secretary a week later to make the next appointment to see him that same week.

Hope it all works out

I see Rafa has worked his miracle again!! :-(

andy

User

Posted 18 Apr 2019 at 16:59

Don’t assume that they found something on the MRI - it wouldn’t be best practice to rely solely on the scan. The best diagnostics are by combining all available results... the PSA, DRE, MRI and biopsy. Even if there is a grey area on the scan, it may not be cancer.

In your own words “However, I do not think a clear MRI would give me enough peace of mind to formally dismiss the prospect of potentially having PC.” If they had written saying “hey your scan was clear, off you go” you would probably be anxious that they hadn’t done full checks.

Edited by member 18 Apr 2019 at 17:19 | Reason: Not specified

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

User

Posted 18 Apr 2019 at 17:15

Rafa, Rafa, Rafa 🎉💕

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

User

Posted 24 Apr 2019 at 14:40

Thank you for all your replies.

Another update: This morning I had my TRUS biopsy. For anyone who is reading this thread and hasn't had one of these before, there really isn't anything to worry about. My threshold for pain isn't great, but the procedure isn't painful at all. I would describe it as slightly uncomfortable with the sensation of a staple gun without any pain (the local anaesthetic really does work a treat). I was a little alarmed to find blood in my urine afterwards, but this is expected and a normal side-effect. It still took me by surprise though and freaked me out for a minute or two. Anticipation of having a TRUS biopsy is far worse than the procedure itself. If I could advise my former self then I would tell myself to not dwell on that appointment date in my diary. I really did make a fuss about nothing.

As for waiting for the results. I'm not going to worry about that either or torture myself in the meantime. What will be, will be and waiting a few weeks is not going to change the outcome. As LynEyre pointed out when she quoted back my own words. Not having a biopsy would not have given me the peace of mind I needed so it would have been something I would have eventually requested, regardless of the MRI results. I also learned what my MRI results actually were today. The result of my scan was inconclusive. There was nothing on it to rule-in or rule-out PC which is why my Urologist referred me for the biopsy, taking into account that I have slightly elevated PSA levels. It would have been nice to have received this information before the biopsy appointment, but I'm not going to complain too much about that. I have received excellent overall care, thus far, and no system is perfect I suppose.

Have a great week all. Mark.

User

Posted 25 Apr 2019 at 07:22

Glad to hear that the biopsy went well, Mark. As you say, the anticipation is far worse than the actual event!

All the best,

Chris

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