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A bit taken aback!

User
Posted 11 Jan 2019 at 19:13

Hello, I  have been lurking on here for the past year since my positive diagnosis and have finally decided to post. Briefly, my GP had been monitoring my PSA since 2012 when an ultrasound following a UTI showed I had an enlarged prostate. My level has fluctuated between 3.6 and 4.8 and had dropped to 4 at the last test in 2016 (I am now on the verges of becoming a pensioner at 65). The 2017 test showed a rise to 6 and my GP referred me. This unwelcome news arrived on the same day that our then 19 year old daughter was diagnosed with Hodgkin's Lymphoma and faced 4 months of unpleasant chemo (to which she has fortunately responded and is now free of the disease.) 

Anyway, off to our local urology unit for a DRE which showed nothing abnormal, then an MRI followed by a trip back to the urology unit for a TRUS biopsy. The somewhat avuncular urologist who performed this reassured me by saying that the MRI was clear and that if there was anything in the prostate it would be small and contained. The 2nd January 2018 found OH and me in front of a locum urology consultant being told that the biopsy was positive but don't worry too much as only 2 of 12 samples were affected with a Gleason of 6. In view of this and my daughter's situation, AS was recommended and I was happy with this. Obviously the MDT agreed with this decision because I didn't get an appointment to see anyone until the 24th April which reassured me further as I figured that if there was a gap of 4 moths from diagnosis to consultation then nobody was too concerned.

April 24th arrived and I saw a specialist nurse who went through treatment options should treatment be deemed necessary. RT was a no no due to a urethral stricture which has been treated twice and which now requires weekly self catheterization (it is not as bad as it sounds, believe me!) But he was happy to continue with AS apart from the anomaly on my MRI. Er, hang on, what anomaly? I was told by the doctor who did the biopsy that my MRI was clear. "No, there is an anomaly," came the reply. So it was agreed that I would have another MRI, a PSA test immediately, and another consultation in June with an instruction to have another PSA test the week prior to this.

I received a phone call a week later to tell me that my latest PSA result was 9 but not to worry as it can fluctuate. So I had the MRI, and had another PSA a week before the next appointment. At the June consultation, it was revealed that the anomaly on the MRI had not changed since the original scan 8 months earlier and my PSA had dropped to 6.5. So continue with AS, a further PSA test in October and a template biopsy in December.

I received an appointment on the 7th January to discuss the biopsy results and apart from the usual pre-appointment jitters, I went along reasonably confident that AS would be continued. Then the bombshell! 9 out of 34 samples are positive with a Gleason of 10! I now have an appointment with a urology consultant on the 15th, a CT scan tomorrow, a bone scan on the 17th, and am waiting for an appointment with an oncologist. I am booked in for RP on the 15th February assuming that the scans show that everything is still contained. The nurse did give me a bit of reassurance by saying that if the cancer had broken out of the prostate then we would be looking at HT and a time of years rather than months!

I am still trying to make sense of all this. I spoke to a very supportive PCUK nurse when I got home who said that a move from low grade and volume cancer to the current level was very unusual and thought that the original biopsy could have missed some of the cancerous cells and that I could have had a Gleason score of 10 all along. 

So here I am, wondering what the future holds, but still reeling from the news. I am doing the pelvic floor exercises in the hope that I will actually need them rather than going on to HT and presumably chemo.

Thanks for reading this and best wishes to you all.

 

 

 

User
Posted 11 Jan 2019 at 20:26
What a catalogue of errors! Unforgivable that you were told th3 first MRI was clear if there was an anomaly but there again, if th3 urologist had been given the wrong information he can hardly be held to account for targeting the wrong bit of your prostate, it being entirely possible that you had a G6 wherever the samples came from and a G10 where the grey area was showing. I guess it doesn’t really make much difference to you now but I would probably be cross enough to want a clear answer from the medical records ... did the uro give you the wrong information or did radiology give him / her the wrong information or did everyone give the right information as they understood it at the time?

The only reason I say that is that it is possible you didn’t have the G10 a year ago - the rise in PSA from 6 to 10 over the same period would fit with that hypothesis. It is not unheard of to have two or three prostate cancers in the same gland, and not always even of the same type.

Fingers crossed that your other diagnostic results are okay. Just one thing about what the nurse said - it could have ‘broken out’ but still be operable and conversely, it could be contained but still have managed to metastasise.

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

User
Posted 13 Jan 2019 at 08:01
Bollinge not really a definitive example of the benefits of template biopsy, more a good example of a complete cock up.

If the scan was clear he should have had the template first if PC was still suspected.

If the scan showed an anomaly the TRUS should have targeted it, clearly it didn't.

Certainly a good example of why you shouldn't trust a TRUS for initial diagnosis if you are choosing AS.

Good news is it has now been diagnosed and the appropriate treatment will be administered.

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User
Posted 11 Jan 2019 at 20:26
What a catalogue of errors! Unforgivable that you were told th3 first MRI was clear if there was an anomaly but there again, if th3 urologist had been given the wrong information he can hardly be held to account for targeting the wrong bit of your prostate, it being entirely possible that you had a G6 wherever the samples came from and a G10 where the grey area was showing. I guess it doesn’t really make much difference to you now but I would probably be cross enough to want a clear answer from the medical records ... did the uro give you the wrong information or did radiology give him / her the wrong information or did everyone give the right information as they understood it at the time?

The only reason I say that is that it is possible you didn’t have the G10 a year ago - the rise in PSA from 6 to 10 over the same period would fit with that hypothesis. It is not unheard of to have two or three prostate cancers in the same gland, and not always even of the same type.

Fingers crossed that your other diagnostic results are okay. Just one thing about what the nurse said - it could have ‘broken out’ but still be operable and conversely, it could be contained but still have managed to metastasise.

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

User
Posted 12 Jan 2019 at 05:59

Sorry to read all that Surfer.

Another example of the TRUS biopsy ‘being as bad as we thought it was’ - in the words of Britain’s leading prostate cancer oncologist.

I hope it all works out for the best for you now, anyway.

Cheers, John.

https://vimeo.com/169926390

 

Edited by member 12 Jan 2019 at 06:04  | Reason: Not specified

User
Posted 12 Jan 2019 at 11:44
Thank you both for your replies. Lyn I was a bit puzzled by your comment about cancer still being operable even though it has broken out of the prostate. Although I have learned a lot from reading the forum conversations there is still much that I don't understand. I thought that if this point was reached then there was no point in surgery so I would appreciate it if somebody would correct me if I have got this wrong.

Best wishes

Pete.

User
Posted 12 Jan 2019 at 12:08
Imagine the prostate to be an orange.

Stage T1 - If the flesh has gone bad inside but the skin still looks lovely then surgery or the various forms of radiotherapy all have a good chance of getting rid of the problem.

Stage T2 - If the orange skin is bulging or looks a bit of a funny colour but is still intact, surgery is still a good option.

Stage T3 - If the skin has broken and the mould can be seen on the outside of the skin, surgery might still be possible but radiotherapy might also be needed later. In other words, if the skin has broken and the mould can be seen but the orange is on its own in the fruit bowl, throwing the orange out might still work.

Stage T4 - If the mouldy orange is touching other fruit in the bowl and now the bananas and apples are also mouldy, there is no point removing the orange from the bowl or trying to cook it.

The orange can look absolutely delicious (T1) or rotten through to its core (T3 or 4) .... if the rotten juice has dripped out of the orange and along the edge of the fruit bowl to the grapes (N1) there is no point trying to remove or cook the orange.

If the orange is still looking gorgeous but the rotten juice has soaked into the bowl (M1) there is no point removing or cooking the orange.

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

User
Posted 12 Jan 2019 at 12:11

Thanks again. Nice analogy and I think I will stick with apples and bananas from now on!

User
Posted 12 Jan 2019 at 13:04

Hi Surfcaster, I can’t add anything to what Lyn and John have said but wanted to wish you all the best for your prostatectomy. 

Ian

User
Posted 12 Jan 2019 at 13:09

Thank you Ian. I still don't know if prostatectomy is appropriate.  I have a CT scan this afternoon and a bone scan next Thursday and I see the urology consultant on Tuesday.  Still waiting to see the oncologist.  My fingers are firmly crossed.

Best wishes 

Pete 

User
Posted 12 Jan 2019 at 14:33
If I were you I would request second opinions from another surgeon and also from another oncologist, as you are entitled to do, on the NHS, before you make a final decision.

Bear in mind, if you do have surgery, you may end up having radiotherapy anyway subsequently. But surgery might remove your cancer once and for all! Bit of a quandary, isn’t it?

Take as much advice from the professionals as you can.

Cheers, John.

User
Posted 12 Jan 2019 at 16:16
Why are you suggesting a second opinion from another surgeon and onco before he has even seen the first ones Bollinge? Have you misread his current status, perhaps?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jan 2019 at 06:36
I read his status. Just saying it’s a crucial decision in his life and four opinions are better than two on which to base it on.

Cheers, John.

User
Posted 13 Jan 2019 at 08:01
Bollinge not really a definitive example of the benefits of template biopsy, more a good example of a complete cock up.

If the scan was clear he should have had the template first if PC was still suspected.

If the scan showed an anomaly the TRUS should have targeted it, clearly it didn't.

Certainly a good example of why you shouldn't trust a TRUS for initial diagnosis if you are choosing AS.

Good news is it has now been diagnosed and the appropriate treatment will be administered.

User
Posted 13 Jan 2019 at 14:17
My scan was not clear.

I didn’t have the TRUS biopsy as I eschewed it, having been forewarned by two friends to avoid it, as they both had to have additional template biopsies subsequently.

In the event, Tommy the Tumour would have been detected with a TRUS, but we didn’t know that until afterwards.

So my only regret is the lapse by my GP in PSA testing from 2010 (2.2) until 2017 (16.7), and the discovery of spread to my lymph nodes after the post-op biopsy which have yet to progress🤞

Cheers, John

User
Posted 18 Feb 2019 at 10:16

Hello all. I just thought I would post an update. 

12th January CT scan.

15th January appointment with urologist. A registrar who agreed that the original scan most likely missed some of the cancer. He said my CT scan was clear apart from something near my adrenal gland which he thought was most probably an adenoma but he arranged an MRI to clarify.

17th January bone scan.

20th January MRI scan.

24th January attended the monthly forum/ presentation at the hospital for men who are due to have RP. Came away feeling both reassured and apprehensive.

26th January letter arrived saying I had an appointment with the consultant on the 14th February. A bit odd I thought as the op was scheduled for the 15th. And still no word from oncology to whom I had been referred by the specialist nurse a month previously.

30th January I phoned the consultant's secretary to ask for clarification. She was very pleasant and said she would contact the specialist nurse and ask him to phone me. He didn't.

1st February I got a phone call from a different secretary telling me that the appointment on the 14th had been cancelled and was now scheduled for the 7th. I asked what the appointment was for and was told that surgeons had to see their patients prior to operating . 

7th February I finally get to see the main man who immediately starts talking about surgery. 'Er, does this mean that the bone scan was clear?' It was apparently. The consultant agreed with what I had already been told about the flaws in the biopsy and said that understaging occurred in about 20-25% of cases. He also reckoned that despite the cancer being more aggressive than was originally thought it was still slow growing and was happy to delay surgery until the 3rd April to allow me to take my daughter to various university interviews. Finally, despite RT not being appropriate for me, he said that I should see an oncologist just to talk through other alternatives and said he would chase up the original referral that had been made in January.

So that's where I am at the moment. Although I feel apprehensive I am not brooding on the situation and am getting on with life as normal. No doubt this will change a bit the nearer I get to the operation but for now I am too busy landscaping the garden, working, and driving all over the place for these irksome university interviews. Portsmouth last week, Nottingham on Saturday. I am just thankful she doesn't want to go to Aberdeen!

 
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