Help for a Diagnosis Required

User

Posted 12 Apr 2016 at 11:47

Hi everyone. I'm new to all this.

Here goes: (All NHS) 9/2/2015 had well-man clinical blood tests done which in which a PSA blood test came back at 5.1 (I was 60 years old). Dr worried so sent me onto hospital, where, on:

24/2/2015 had a Transrectual Ultrasound guided Biopsy (TRUS) which came back (3/3/2015) benign for malignancy, with prostate volume 40.5cc, PSA Density 0.13.

Over the course of the year had further PSA tests which came back at: 6.1. & 7.3.

Due to these results the hospital sent me on 13/11/2015 for a MRI scan of Prostate.

2/12/2015 during the results of the MRI scan: I was told that, on a scale 1-5, 1 & 2 is not cancer, that 4 & 5 is cancer. I'm 4 - 'inconclusive! and therefore will have to have a template biopsy (transperineal biopsy) (as a hospital day case anaesthetic).

11/01/2016 (Age 61 now) had a Pre-Operative Assessment at the hospital.

Have never heard back from the hospital for the op. and the Hospital/Consultants secretary never answers 'phone.

Re-visit my Dr who suggests another PSA test which now comes back as 9.5

My Dr wrote last month to the hospital with regards to his concerns and would it be possible to move me forward in the (7 to 8 month waiting list) queue.

Heard nothing back.

Can anyone in the community help mine & my wife's anxiety with, what seems to us, to be an extremely long delay in obtaining this biopsy, and therefore a diagnosis, especially seeing that I had a pre-op over 3 months ago and no mention of the wait was made then! What's the point of a pre-op without an op?

I cannot afford private.

Please help, as the waiting and uncertainty is killing me!

Thanks,

Gareth Davies

Edited by member 14 Apr 2016 at 21:21 | Reason: Not specified

User

Posted 12 Apr 2016 at 13:02

Hi Gareth,

I can understand your concerns and naturally it's a worrying time for you both. I could say don't worry that as you've not heard from the hospital they're not too concerned at the moment. However you are concerned and it's understandable that you want to know what will happen next.

If you've had no joy from the Consultant's office then I suggest you call the hospital's appointment department. I've had situations when I've wanted to check on when the next procedure is or have needed to change an appointment time. I found that they have access to a variety of different numbers to try and even gave me the names of the people I needed to speak to. They were really helpful and understanding. I hope that this helps you and I wish you well for whatever comes next for you.

Regards,

John

User

Posted 12 Apr 2016 at 16:20

Do you have your biopsy results ? There should be a Gleason score that looks something like 4+3. It is important to get them the right way round.

You mentioned that during you MRI scan you were told "" I'm 4 - 'inconclusive!"" . If your Gleason is 4+4 that is hardly inconclusive.

Thanks Chris

User

Posted 12 Apr 2016 at 18:01

Gareth

I am no expert on the way the NHS works or in some cases sadly does not. However if there is a suspicion that you have cancer then I think you should be on the fast track referral and appointments system until a diagnosis is made.

You have had various diagnostic tests and several PSA tests that indicate the possible presence of Prostate Cancer. I am confused by the interpretation of the TRUS as I don't understand how something can be benign for malignancy it seems to be a contradictory use of words. The 1 -5 rating of your MRI seems an odd way of explaining that too, what happened to level 3 ? and if you are 4, as Chris says that is hardly inconclusive.

This must be an extremely worrying time for you and your wife. This could be a very low grade and slow growing cancer which may mean that treatment is neither urgent or necessary. It may not be cancer at all but you need to know one way or another.

I would do what John (Surr33) has suggested and call the appointments department, explain that you have had a pre operation assesment over 3 months ago but have heard nothing. They should be able to see if you are even on a surgical or appointment schedule. They may be able to put you in touch with someone who can help.

I think your GP could probably do more to help you too, writing takes too long, they should call the Urology department at the hospital and get an updated appointment for you.

NHS Choices is supposed to give you the freedom to go anywhere you want within the NHS, however remember that some treatments require frequent hospital appointments, so distance can be a real hinderance and it can be expensive. Your GP surgery should know what to do to get a referral out of your region.

Sometimes you have to be pushy and sadly quite vocal to be heard out there.

I wish you all the best

User

Posted 12 Apr 2016 at 19:27

I think Chris and Mo have misunderstood your results? You won't have a Gleason score because they didn't find any cancer in your biopsy samples. The grading you mention here relating to the scan is an assessment (on a scale of 1-5) of how suspicious each scanned slice of prostate looks. The areas assessed as 3 or less are considered to be 'unlikely to be cancer' so when you have the next biopsy they will particularly want biopsy samples from any areas that were considered to be 4 or 5. These gratings have nothing to do with, and should not be confused with, Gleason scores which are also on a scale of 1-5 but where the numbers mean a rather different thing.

It is too long to have waited for your biopsy though, unless the pre-op identified a health issue that makes you unsuitable for general anaesthetic??? Hopefully not and you would expect them to have told you or the GP in that case. I agree with Mo, your GP should be chasing this up for you.

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

User

Posted 12 Apr 2016 at 19:47

Lyn

Thanks for your reply. The results now make more sense.

Thanks Chris

User

Posted 12 Apr 2016 at 19:49

Thanks to everyone for their prompt replies and thoughts.

I 'phoned my doctor this morning to see if there was any response from the letter he had written to the hospital consultant and that they would ring me back this afternoon with any response. They didn't ring!

So, I tried again to get through to Urology and, for first time ever today the 'phone was answered and was told that I was put on the waiting list for the template biopsy (transperineal biopsy) last December 2015, and that the waiting list, for then, was 8 months (no-one had told me from the hospital of this and prob. the wait is even longer now!). Therefore, I am approx. half-way in the queue and will be called end of July/beginning of August this year for the op.

The strange thing is that I was told the pre-op tests etc., are valid for six months. (So will be out of date by August)!

I also spoke to one of the Prostate Cancer UK nurses (on this site) today who was very helpful.

She said that in her experience the wait for the transperineal biopsy is generally around months - but the fact that I'm in Nottingham and have one of the top Prostate Consultants/Surgeons (Robotics/keyhole) in the country here, is the reason so many men, from all the surrounding regions, want to come here - and why the wait, because of this, is so long. Therefore, if I left the hospitals care here I would probably have to join another waiting list after another pre-op/tests etc., and that means it would equate to eventually receiving the biopsy about the same time, i.e. July/Aug.

To 'Edamo' -

>> with regards to the TRUS biopsy I previously have had:

I looked up the dictionary definition for 'benign' & 'Malignancy':

"A benign tumor is a mass of cells that lacks the ability to invade neighbouring tissue or metastasize."

"Malignancy (from Latin male, meaning "badly", & -gnus, meaning "born") is the tendency of a medical condition to become progressively worse."

So 'benign for malignancy', I understand, would prob. mean that it's wouldn't spread.

Also, well, spotted, and sorry, I should have typed "I'm a 3" for the MRI rating! (the missing one). So, they just don't know, or aren't telling what '3' really means as, if they know the length of wait, they don't want to worry me even further.

To 'colwikchris' -

>> Following on from my last response to 'Edamo', these are MRI ratings, NOT Gleason scores (which I presume I would receive after the transperineal biopsy - if I could get it).

>> All as per LynEyre's response. (Thanks Lynn - and by the way, no health issues at the pre-op, just 'white coat' high blood pressure readings on the day, which is normal for me - BP back down now!).

So, I'm in the NHS system and I suppose I just have to trust that the Consultant has assessed my risk of cancer correctly - if not, I may well be on my way to pushing up the daisies before the NHS falls down the abyss!

Meanwhile, I WILL be chasing up my Doctor who is now on his own; all the other doctors at the practice having left!

Thanks again for all you thoughts, very helpful.

Edited by member 14 Apr 2016 at 21:23 | Reason: Not specified

User

Posted 12 Apr 2016 at 19:51

Has your GP referred you to the hospital as you should be seen within 2 weeks of referral, but you still have to wait for biopsy and/or MRI. Not sure what the times are for cancer, but for non urgent the times are 18 weeks from referral to treatment, so you might want to talk to the PALs (patient liaison) team.

User

Posted 12 Apr 2016 at 20:50

Originally Posted by: Online Community Member

Lyn I did not misunderstand at all and knew it was not a Gleason score, how could it be when an MRI is a scan a series of images with no histology? What I did not understand was how a 4 rating from an MRI was inconclcusive. So knowing it was actually a 3 makes more sense.

xx Mo

Edited by member 12 Apr 2016 at 20:50 | Reason: Not specified

User

Posted 12 Apr 2016 at 23:19

Sorry Mo, it must just have been the way you worded it. I had assumed that the 4 was a typo as 'inconclusive' is sometimes given to a 3 instead of 'indeterminate'

TZ, the actual descriptors for predictive scanning are

1, definitely no tumor;
2, probably no tumor;
3, indeterminate;
4, probably tumour; and
5, definitely tumour

We had another posting about this only a couple of weeks ago - http://community.prostatecanceruk.org/default.aspx?g=posts&m=143473#post143473

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

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