Miss diagnosed

User

Posted 09 Nov 2019 at 21:48

Bio

Hi I’m 57 years old .I’ve lived out in the South of France for the past 2 years living our dream . Our boat was well and truly rocked last month when I was diagnosed with Prostrate Cancer . The system works very similar to that of the U.K. and treatments are the same . Back in January I went to the doctors complaining that I was getting a stinging sensation when I had intercourse also frequent visits to the loo in the night . The doctor said I most probably have a blockage . My father had passed stones in his 50s and I presumed I had a similar situation . I came out of the doctors feeling convinced I had not a big problem. It continued for the next few months where I went back at the end of March to be seen by a different doctor. At this stage I was having difficulties in the night with frequent toilet visits with interrupted flow. I was sent for a scan on my bladder and this resulted with a large prostrate. This was causing my bladder not to fully empty. I was told by the doctor “ some people have a large heart and some a small heart . This is the same with the Prostrate and I have a large prostrate. He gave me Permixon 160mg . He told me this medication would help reduce the toilet visits . I had also been constantly complaining of being very lethargic. In the middle of all this I also had a heart problem where my heart went into Arterial Fibrillation. With no improvement in August I went back to the doctors and another doctor sent me for blood tests including my first PSA test . This came back at 52 . This then opened up to a follow up with a urologist who did a Prostrate examination and reveille I had a large prostrate. This was followed by Scans of my abdomen and a bone scan .
The cancer had metastasised and gone into my hips shoulders and the side of my face . Also lymph nodes . I have had a biopsy of 9 needles, not sure if thatwas a total or each side . My PSA two weeks ago was at 84 . I have been given Hormone tablets and Hormone injection. Next week I start chemotherapy. The biopsy revealed a Gleason score of 3+4 =7
My question is why was I not sent for a PSA check in January and second why not in March after the bladder results. I consider if the PSA had been taken then in January it may not have amounted to the cancer metastasising to the extent it has . I feel miss diagnosed at an early stage when the evidence was available.

User

Posted 10 Nov 2019 at 02:06

You would need to ask your doctor that question but like the UK, France does not have a screening programme for prostate cancer because the PSA test is not very reliable. As upsetting as it is for you, having a PSA test in January or March probably wouldn't have made any difference as you must have had the cancer for a long time for it to have metastasised to so many places.

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

User

Posted 10 Nov 2019 at 06:31

We went back to see the doctor and said why did she not request a PSA test in January. She had brought in a registrar to the meeting. She actually admitted she had made a mistake and said “ Okay I made a mistake what do you want to do about it “ . The conversation was witnessed by the registrar . She agreed she should not have said I must have a blockage and sent me on my way . When the second doctor had the results from the bladder scan and had seen the enlarged prostrate and given me permixon would it not have been reasonable to request a PSA. He new at that stage I had an enlarged prostrate or is it normal to give Permixon without a PSA check as he wasn’t able to monitor the results of the Medication. Or even refer me at that stage . I feel this cost me well over 6-7 months time and with a PSA that went up so quick from 54 to 84 would I have been as bad as I am now as 6 months ago . Six months ago I could walk miles and I didn’t have any hip problems that I now have . This delayed prognosis must have made things worse .

User

Posted 10 Nov 2019 at 08:44

David,

Prostate cancer is a very slow-growing condition, particularly given your biopsy results of G3+4. It is extremely unlikely that being diagnosed a year ago would have made any difference to the outcome - the cancer almost certainly metastasised years ago. I completely understand that it's stressful to think that a diagnostic opportunity was potentially missed, but it really wouldn't have changed anything in your case.

Best wishes,

Chris

User

Posted 10 Nov 2019 at 09:04

How can you find out how aggressive my cancer is . Would this be in the biopsy results.

User

Posted 10 Nov 2019 at 09:50

The Gleason score is a measure of the aggressiveness of the cancer. A result of G3+4 means that the most commonly seen cancer cells in your biopsy were Gleason grade 3 (the least aggressive form of prostate cancer), with the next most common cells seen being Gleason grade 4, which is moderately aggressive. G3+4 cancer typically spreads very, very slowly, which is why I say that it's highly likely that you've actually had the cancer for a number of years. Unfortunately prostate cancer shows no symptoms whatsoever in many men.

Best wishes,

Chris

Edited by member 10 Nov 2019 at 09:52 | Reason: Not specified

User

Posted 10 Nov 2019 at 10:30

Does the Gleason score take into account the PSA level as they had it ass 64 at the time but it was actually 83 the day after the biopsy

User

Posted 10 Nov 2019 at 10:33

Yes - just to corroborate what Chris says above - I had no symptoms when I went for a PSA test based on family history. It's quite a confusing cancer to get to grips with. My Gleason score was 4 + 3 (which is actually worse than 3 + 4) but my PSA was only a tad over 7 ng.

But it's highly unlikely that the delay in your case will have been a game changer as it is normally a slow growing cancer.

User

Posted 10 Nov 2019 at 11:26

Originally Posted by: Online Community Member

Does the Gleason score take into account the PSA level as they had it ass 64 at the time but it was actually 83 the day after the biopsy

No, a Gleason score is a measure of how aggressive the cancer is. It has no connection with PSA.

Best wishes,

Chris

User

Posted 10 Nov 2019 at 13:58

The biopsy probably caused the temporary rise from 64 to 83 - as could a DRE, anal sex, etc. In the UK, you shouldn't have a PSA test for at least a couple of weeks after a biopsy.

Giving medication to see whether the PSA drops is a common first step (where the DRE indicates a large but benign prostate) in many countries, including the UK.

Heenan, I assume that he must have had two DREs for the doctors to tell him he had a large prostate?

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

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