Recurrent UTI's with raised PSA

User

Posted 04 Nov 2018 at 09:28

Hi Everyone,

I find myself here due to almost a year of recurring Urinary Tract Infections and this condition prompted my very first PSA checks which are elevated above the 'norm'.

You can scan my lengthy Bio or the Summary to get the picture by viewing my profile.

Of course, nobody wants to be in this situation, but here I am and at least I have found you, this wonderful community of knowledge, experience and humanity. I salute you all!

Anyway, to kick things off, I have spent several days now reading on here as I am due for another step on my path to investigate the continued elevation of my PSA. I am UTI free at present. Consequently, I have many questions which further tests may answer in due course. This one may be premature, I may just have BPH or some other explanatory condition. However, if I were to be diagnosed at my local hospital with PCa and surgery was recommended, would I be able to opt for robotic prostatectomy or is that just for Private patients or those fortunate enough to live within the remit of an NHS authority that routinely does them?

Thanks for any helpful advice.

Don

User

Posted 05 Nov 2018 at 23:43

Just to clarify, GE do have a 3 Tesla MRI scanner but as I said previously, most of the scanners used in Europe are either Siemens or Phillips, GE being more used in the USA. T1.5 scanner has it's uses and is adequate in some situations but 3T provides better definition. As I see it there are insufficient more costly 3T scanners in the UK, so some people have the T1.5 one. Once my treating hospital in Germany took delivery of the 3T scanner (the first in Germany I was told), all my subsequent check up scans were done using the T3.

Barry

User

Posted 04 Nov 2018 at 14:53

Most areas have keyhole RP on the NHS and in most cases that is robotic (Da Vinci). Don't assume that robotic is automatically best though; if diagnosed, your surgeon would be in the best position to advise you on the pros and cons of the different types of op.

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

User

Posted 04 Nov 2018 at 19:37

UTI's can be very difficult to overcome, sometimes requiring different antibiotics. As you seem to be prone to UTI's I would press for a template rather than a TRUS biopsy if offered one as apart from being more definitive, there is much less of a UTI than with the TRUS biopsy . Also better to have the MRI before any biopsy.

Barry

User

Posted 04 Nov 2018 at 20:45

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!

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

User

Posted 05 Nov 2018 at 00:07

It isn't just the cost to the NHS - there are good reasons to avoid giving people general anaesthetic unless necessary. In some areas, the template biopsy is undertaken with a spinal block instead of GA but spinal block also has unwanted risks such as long term back pain.

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

User

Posted 05 Nov 2018 at 05:24

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

User

Posted 05 Nov 2018 at 14:51

Promis standard is 1.5T - for diagnostic testing 3T is considered not to add anything particular to the party.

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

User

Posted 05 Nov 2018 at 17:47

Originally Posted by: Online Community Member

for diagnostic testing 3T is considered not to add anything particular to the party.

Some party eh Matron? That must be a barrel of laughs!

There seems to be some doubt as to whether my mpMRI scan was indeed hi-def 3 Tesla resolution as it didn’t seem to pick up any spread. I assumed it was 3T as when I was sliding into the tunnel I thought I spotted a GE logo, with 3T next to it. But I think Old Barry told me GE don’t even make a 3T scanner!

Surprisingly, now no-one in the NHS can tell me which Tesla resolution my scan was. If it was indeed 3T it might have picked up my extra-capsular extension, my perineural invasion and lymph node involvement, which only became evident after my post-prostatectomy biopsy. I have got the DVD of the scan somewhere but can’t be bothered to watch it.

In any event, in my case whether it was a 1.5T vs 3T scan is now a moot point as I am now cured.........................but for others it might be crucial as to whether they undergo surgery and then subsequent adjuvant/salvage HT and RT or just go for HT and RT in the first place and cut out (I like that pun) the surgeon.

I think everyone should be entitled to the highest standard of testing and care such as I have received, considering the billions spent on the NHS and other taxes squandered elsewhere.

Cheers, John

Edited by member 05 Nov 2018 at 17:55 | Reason: Not specified

User

Posted 19 Nov 2018 at 12:09

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 p****d 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

User

Posted 19 Nov 2018 at 19:04

mpMRI is a much bigger deal on this forum than in the real world and I imagine the very qualified staff have a good giggle about patients that arrive asking odd questions about something they have read about online. There are very few T3 machines in the UK - the most recently installed one needed a large extension to house it.

https://www.buildingbetterhealthcare.co.uk/news/article_page/New_3T_MRI_scanner_lands_safely_after_crane_drop_through_hospital_roof/145592

And not all hospitals that have a T3 make it available for prostate scanning:

https://www.google.co.uk/search?client=ms-android-samsung&q=3+tesla+mri+locations+uk&sa=X&ved=2ahUKEwiD3JqVkeHeAhUHTsAKHSf-AdgQ1QIoAHoECAsQAQ&cshid=1542653875748&biw=360&bih=616#aq=3%20tesla%20mri%20locations%20uk&istate=lrl:mlt&rltbs=lrf:!1m5!1u8!2m3!8m2!1u8050!3e1!1m4!1u3!2m2!3m1!1e1!1m4!1u2!2m2!2m1!1e1!2m1!1e8!2m1!1e2!2m1!1e3!2m4!1e17!4m2!17m1!1e2!3sIAE,lf:1,lf_ui:2&rlvp=oll:0,0;ospn:0.06756399999999729,0.087223;oz:0;sll:54.28638052088867,-1.9747935291557042;sspn:5.851108426068329,7.91015625;fll:54.28638052088867,-1.9747935291557042;fspn:5.851108426068329,7.91015625;fz:6

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

User

Posted 19 Nov 2018 at 20:10

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

User

Posted 20 Nov 2018 at 01:28

When I had my MRI scan the Eritreans hid in the control room behind thick glass as the isotopic tracer was injected.

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.

User

Posted 17 May 2020 at 22:41

Hi everyone,

Long time no post! This is turning out to be a long journey. An update is now overdue since I reported back in Nov 2018 when my PSA stood at 9 ( see prior history in my profile). Things are beginning to hot up!

I have just updated my profile to bring 'progress' up to date since. Not a great deal has happened. In summary 2 MRI scans have given a PI-RADS score of 2 with no sign of a tumour. However, the PSA has risen slowly from 9 to 16.1 over the intervening 15 months and I am booked for transperineal biopsy under local anaesthetic on 21 May.

So I should finally get a result and hopefully get to the bottom of this, one way or the other, and then I will know where I stand.

Not very exciting, a saga that started back in Nov 2017 with recurrent UTI's, but useful to someone hopefully

Cheers, Don

User

Posted 08 May 2021 at 01:19

You can make a case for and against surgery and radiation and where both options are offered men may settle for one over the other for various reasons. If you have not yet done so I suggest you download or obtain a hard copy of the 'Toolkit ', which provides information on these treatments and provides other useful info. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880&limit=100

In your position, I would try to ascertain how well the cancer is contained. If it is thought likely that the surgery might not remove all the cancer, you might need radiotherapy additionally, in which case you might think it better to opt for RT in the first place. You could also ask your oncologist how long he would want you to be on HT after RT if you decided on that option.

Edited by member 08 May 2021 at 01:19 | Reason: to highlight link

Barry

User

Posted 08 May 2021 at 08:05

I went down the HT/RT route (strongly recommended in my case) and found it all very tolerable. The side-effects were at the level of minor inconveniences, and two years later I'm leading an entirely normal life with no long-term side-effects. As I said, for me RT was the recommended treatment, but had I been free to choose, it's the treatment I would have opted for anyway. The one side-effect of surgery which didn't appeal to me at all was incontinence.

Best wishes,

Chris

User

Posted 08 May 2021 at 10:50

Hi. I don't know how I missed your original post back in 2018 but if I had I would probably suggested reading my bio, as our two stories are so very similar.

PSA rising with associated UTIs and antibiotics bringing the PSA down but always a very slight upward trend and biopsies coming back clear.

Then the day arrives when the BPH has to be dealt with more aggressively, other than medication and hey presto they find the little buggers hiding in the tissue removed during the HoLEP procedure in 2015.

When the Gleeson 6 tumour kicked off we'll never now but I suspect sometime around 2005/6 when the the PSA started to rise but the UTIs did a good job of throwing us of the scent.

Active surveillance since 2015, a very stable low PSA since then and hope it remains so until I snuff it from something else.

Good luck with whichever treatment path you choose.

Roger

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User

Posted 04 Nov 2018 at 14:53

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

User

Posted 04 Nov 2018 at 16:34

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

User

Posted 04 Nov 2018 at 19:37

Barry

User

Posted 04 Nov 2018 at 20:45

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

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

User

Posted 04 Nov 2018 at 23:47

Hi Barry,

Thanks for your interest and advice. From what little time I've spent reading on here, it does seem that the template biopsy is more accurate. I guess the NHS trusts would not be in a position to support everyone having the procedure as it seems much more expensive for them.

As you suggest, no harm in pushing for that if it comes to it.

Again, the consensus seems to be to go for mpMRI if at all possible before a biopsy.

After all the UTI's I would be happy to minimise the risk of getting more using the approaches above.

Don

User

Posted 05 Nov 2018 at 00:07

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

User

Posted 05 Nov 2018 at 00:16

Hi Lyn,

Thanks again! Great links to the PROMIS study. It seems from studying the map, my local hospital has the ability to offer the PROMIS pathway. Sounds like a no-brainer although, as you say, they may only offer it if I meet the right criteria.

As I now know the name of the consultant I'm seeing, do you happen to know where the links are to check his performance?

Just to clarify, I haven't had any biopsy performed on the prostate. The biopsy I did have last January, when they wanted to eliminate bladder cancer, followed a cystoscopy examination of my bladder which showed up two red spots. They decided to do a biopsy on these under GA and then cauterised them. They were confirmed as minor irritations of the bladder wall, probably related to the UTI's I was getting.

In terms of P Ca symptoms, it's just the elevated PSA readings so far. All three above the norm and they may be related to the infections. As you say, there may be a deep-seated infection lurking somewhere that keeps popping up periodically and/or it's P Ca as well.

I do have mild enlargement of the prostate which was noted during the cystoscopy. Family history wise my older brother has BPH and I think my dad had it back in the 60's when he had TURP to improve his waterworks. As far as I know, no family member has diagnosed P CA - yet! However, I do think the right course of action is to get diagnosed one way or the other and put my trust in the hands of the specialists.

Anyway, great advice from you all on here.....I'm now much better informed as to what to push for.

Don

User

Posted 05 Nov 2018 at 05:24

Hi Don,

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

User

Posted 05 Nov 2018 at 11:20

Thanks John,

that's very interesting about being referred out of area I guess I hope in a way that my local hospital will be able to provide whatever more might be needed but good to know there are options.

I am waiting to hear from the local hospital urology department prior to my appointment on Wednesday as I want to know a little more about the pathway that they follow at the hospital. Obviously with having had lots of urinary tract infections I'm not too keen on the idea of going for biopsy but it will no doubt crop up eventually. I believe the local hospital follows the promis pathway so at least I should get hopefully the mpMRI 3 Tesla quality scan followed by a targeted biopsy if necessary.

Don

User

Posted 05 Nov 2018 at 14:51

Promis standard is 1.5T - for diagnostic testing 3T is considered not to add anything particular to the party.

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

User

Posted 05 Nov 2018 at 17:47

Originally Posted by: Online Community Member

for diagnostic testing 3T is considered not to add anything particular to the party.

Some party eh Matron? That must be a barrel of laughs!

I think everyone should be entitled to the highest standard of testing and care such as I have received, considering the billions spent on the NHS and other taxes squandered elsewhere.

Cheers, John

Edited by member 05 Nov 2018 at 17:55 | Reason: Not specified

User

Posted 05 Nov 2018 at 19:46

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

User

Posted 05 Nov 2018 at 23:43

Barry

User

Posted 07 Nov 2018 at 12:05

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

User

Posted 19 Nov 2018 at 11:15

Hi all

Just an update to say that I had my MRI scan at Stratford today. I was surprised that the radiography staff did not seem to understand when I asked if the machine was an mpMRI machine. The radiographer responded at first with "yes it is a multiplanar MRI and can do all the sequences". Well I was duly inserted into the machine and it did all the sequences I presume. I did note that they did not use any kind of dye which I thought was supposed to be the gold standard but, hey-ho, presumably time factors mean they don't always do that

I have seen in recent news that the hospital had a new machine delivered in June and having read up on the PROMIS project etc was keen to know if machine was 1.5 or 3 Tesla and a dye was to be used etc

The machine itself looked new, it was a Siemens and from the little I could gather from the other radiographer present it was a 1.5 Tesla. He said they couldn't accommodate a 3 Tesla in a small hospital setting like their's which I didn't quite follow as this is supposed to be a brand new state of the art Cancer Wing

As has been said before the PROMIS project was done using 1.5 Tesla machines and I guess for my current situation should be adequate to rule out advanced Pca.

They tell me the results will be a week to 10 days so I will report back when I have more information

Thanks for your interest

User

Posted 19 Nov 2018 at 12:09

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 p****d blood when they removed it.

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

User

Posted 19 Nov 2018 at 19:04

https://www.buildingbetterhealthcare.co.uk/news/article_page/New_3T_MRI_scanner_lands_safely_after_crane_drop_through_hospital_roof/145592

And not all hospitals that have a T3 make it available for prostate scanning:

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

User

Posted 19 Nov 2018 at 20:10

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

User

Posted 20 Nov 2018 at 00:17

Thanks everyone for your kind responses. Yes I think I probably had an inflated idea of what specifications hospitals were using for mpMRI machines. I mistakenly jumped to the conclusion that new machines would be 3T and of course that is not the case.

Anyway I am now quite satisfied that the machine they used for my scan today would probably identify anything very serious, the only question in my mind was the fact they did not use a dynamic contrast agent (DCE) as that seems to be the standard that prostatecancer.uk are pushing for the PROMIS diagnostic pathway. Maybe because my consultant does not have reason to suspect prostate cancer he has foregone the option for the time being or it's a cost related thing.

Again thanks to you all for your interest and support I will keep you posted on further developments.

Don

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