Recurrent UTI's with raised PSA

Hi Lyn,

Many thanks, I really appreciate your views. I have a lot to learn and had formed the impression this robotic thing was the leading edge in surgery and would yield the best possibility of a good outcome, with nerve sparing being more readily achievevable. I can understand that there is still a lot of human factor involved and I appreciate your words of caution.

I suppose my main question is more towards how much choice you get and how you get it. I have read the odd comment about surgeons league tables and making sure you get the best you can. At the same time it seems you get what's on offer unless you go private due to funding considerations of your NHS Authority, e.g. template versus TRUS biopsies.

I am aware I am probably sounding a bit of a desperate novice wanting to know everything from the off.....probably self preservation kicking in and I need to calm down. Haven't even been diagnosed yet...just anticipating the worst.

Thankfully, these forums are full of great stories and hard won battles. It is very humbling to read folk's experiences.

Don

It would be uncommon to have so many UTIs one after another - they may conclude that the infection you have is one of those deep-seated types that can't be treated with normal antibiotics and doesn't show on the dipstick test. Having already had a TRUS biopsy, the sensible thing this time would be to ask for an MRI before they do any more biopsies.

Both template biopsy and MRI is available on the NHS - not all hospitals can do an mpMRI and some have the equipment but choose not to use it for all referrals. You could ask your GP about what is known of your local urology department or you can check the interactive map here https://prostatecanceruk.org/about-us/what-we-think-and-do/mpmri 

The fact that your PSA goes up & down suggests infection rather than cancer, but you could have both!

Hi Don,

As far as I know you can choose to see any consultant urologist or oncologist on the NHS list if you are prepared to travel to their hospital. And then you can select different ones for second opinions, as I have done.

As our Matron here rightly pointed out on another post, if you were to have out of area surgery (I travelled 115 miles for mine), there is the question of local follow-up care to be considered. Some consultants and hospital trusts can be funny about that, so best to have that matter sorted if you contemplate going outside your area, which hopefully you will not have to.

My local consultant has been very good in that regard, and he even mentioned the name of my eventual prostatectomy surgeon during my ‘Dear John, Big C’ consultation. He was kind enough to take me back under his wing to arrange my catheter removal locally, and I have even been sent an unsolicited follow-up appointment with a prostate nurse this week.

My surgeon said he would not send any friend or family member to any surgeon who does less than 100 prostatectomies a year. He himself does 300-400.

Surgeons’ results are to be found on the BAUS website, although some seem disinclined to publish their results and outcomes there.

https://www.baus.org.uk/

Best of luck.

Cheers, John

Edited by member 05 Nov 2018 at 08:24  | Reason: Not specified

Thanks everyone I have had a phone call back from the urology nurse specialist today and she explained that because my PSA is a bit up and down along with the urinary tract infections the consultant may decide not to go any further on Wednesday but,I assume, carry on forward with a kind of active assessment regime for now. She said if he decided that action was necessary the MP MRI followed by biopsy pathway would be used all within a later, single visit appointment. I forgot to ask whether it was 1.5 T or 3T capability. She did confirm my concerns that biopsies are toxic and a risk in terms of infection, but I guess that is life so to speak if you need it to eliminate even worse evils!

John, I read with interest your case history and experience and the query about the diagnosis not picking up the full extent of your condition. I wonder if some of it was to do with the expertise of the radiologist in interpreting the scans... just a thought from a novices point of view. If I recall correctly the PROMIS project was based on using the minimum quality 1.5T?

Still, really thrilled that you seem to have now got on top of it! My very best wishes for the future and all who sail in her.

Don

Saw Urology Consultant. He set some store by fact my first PSA was 11 and came down to 7.4 The fact it went up to 9 in his view was not yet cause for great alarm given history of UTI infections, yet everything else was giving normal signs, i.e. my urine tests, ultrasound scan, cystoscopy of the bladder, DRE examinations and my UTI infections had subsided. He said I MIGHT or MIGHT NOT have cancer cells growing. Option was to do biopsies but these are invasive and may be considered overkill until further evidence. He proposed next step would be to have a look at a mpMRI scan and to continue with further PSA testing.

I asked him what Tesla of the MRI machine was and he didn't seem to know (or somewhat bemused by the question). However, for what it's worth, he said in his opinion the Radiologist was one of the best in the country.

I am happy so far...one step at a time!

Don

Edited by member 07 Nov 2018 at 12:07  | Reason: Not specified

Hi Don T,

I’m pretty sure I had an intravenous tracer injected through a cannula on the back of my wrist for my mpMRI, in fact I know I did ‘cause it pissed blood when they removed it.

And fancy the radiographers not knowing quite what equipment they were using! I had two lovely lads operating my machine who were from Eritrea, so I said put some Bob Marley on the headphones, but that was evidently lost in translation as all they played me was garage, house, drum & base, whatever, all crap, composed by the scanner itself!

Hope your scan results are positive - or negative. That can be taken either way can’t it? Hope you don’t have a big problem is what I meant.

Best wishes and the best of luck.

Cheers, John.

Edited by member 19 Nov 2018 at 12:12  | Reason: Not specified

I had a tracer for my MRI Scan, he connected a long injector pipe to my cannula and played Stairway to heaven in my headphones, which I thought was a little early😉 He injected the tracer from the safety of his control room!

 The only other injection I had was the radioactive tracer when I went for my bone scan which weirdly enough in Bristol is called the nuclear medicine bunker 

If life gives you lemons, buy a bottle of vodka - Alan Bennett

Edited by member 19 Nov 2018 at 20:12  | Reason: Spelling

When I had the bone scan they injected the tracer and I was told to return in two or three hours, but to keep clear of pregnant women and new-born babies! We repaired to the pub for lunch, and when we returned, Her Loveliness was allowed to sit next to me as the scanner passed over.

On a Customs reality TV show, a poor Kuwaiti woman caused a major nuclear alert when a hyper-sensitive Geiger counter set off an alarm at immigration at JFK airport. Her bags were repeatedly scanned as they feared something like a ‘dirty bomb’ Al Quaeda nuclear attack on Times Square. It was only when an Arabic interpreter arrived some time later, that she was able to tell the border guards she had had a bone scan in Kuwait the day before, and that she was radioactive, not her luggage!

Cheers, John.