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case of the mysterious shrinking prostate

User
Posted 25 Feb 2020 at 19:25

Hello-I would be interested to hear if anybody here has personal experience/heard of somebody else who has had confusing mpMRI results?My partner has just seen consultant for results of mpMRI scan nr 4 (part of his agreed A.S. protocol is 6 monthly to yearly MRI/3 monthly PSA test,after 1 core of 10 needle Trus biopsy showed 7% gleason 3..). The first scan,about 2 and a half years ago,showed several small suspicious areas,estimated Pirads 4 for the two largest..nothing outside prostate-estimated prostate volume 29ml..the next two,carried out over next 2 years,were de3emed to show 'no noticable change' (though prostate volume was noted as 32mls,followed by 42mls on next one-is that not a change??).The last and most recent one did not even give measurements or estimated Pirads of lesions,merely 'no noticable change'-though THIS Time,prostate volume was 22mls-smaller than ever!!This would have been,to my thinking,good news,had it been accompanied by drop in PSA (smaller prostate-less PSA)-but no-PSA ,which  triggered biopsy at 11.7,and had been hovering between 8 and 12 over last 3 years,was up to 15 last test-so that theory is out the window..several questions: IF prostate size can be taken as accurate,what on earth might have caused it to almost halve? If prostate size NOT accurate,what does that say for likelihood of sizes of lesions to be accurate?PSA does not bother us very much,overall trend more interesting (approximate doubling time 6 years so far..)Second opinion on latest scan?all previous scans?

User
Posted 26 Feb 2020 at 03:21
bearsdraught

There are only a small number of regularly active members on this forum and we have neither a urologist nor an oncologist. We had a GP but he stopped posting quite a long time ago. Nevertheless, through their accumulated experience and research, members have done their best to support each other and new members and have been thanked for this on numerous occasions for the time they devote to doing this. In fact it is exceedingly rare for anybody to question whether this is a support group and I think you have been disrespectful to Lyn who has the broadest knowledge of PCa on this forum and contributes the greatest number of posts. She gave you her best advice and rightly suggested you seek further clarification from a consultant (rather then to press for a more detailed answer from an unqualified forum member). You may find that even professionals sometimes find it difficult to explain things and certainly can disagree between themselves as I have experienced.

There is no pecking order on this forum, where did you get the idea there was? Everybody is free to comment as long as they stay within forum rules. Furthermore, it is understood that some people are demonstrably more upset due to the ramifications of PCa on themselves or their families and can be inclined to rant but not at somebody trying to help them.

I have a Granddaughter who is in the autistic spectrum (not implying you are). She was naturally, curt, took everything literally and found it hard to understand a joke or a play on words but now has an interactive job with the public and relates very well with them although it means she has to sometimes curb her natural attitude which is necessary if selling to the public or seeking help as here.

Barry
User
Posted 26 Feb 2020 at 00:07

Hi Lyn, well I'm going to venture into the bear pit and try and be helpful. 

This article does refer to decreasing size. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5003410/

This article gives you the formulae for calculating size based on measurements

https://ro-journal.biomedcentral.com/articles/10.1186/1748-717X-9-200

Only bother reading the rest of this post if your interested in science. 

I studied physics to degree level. We were taught how to measure things and how to report results. If I had handed a piece of work in and specified psa as 4.0 I would have got shot. ALWAYS SPECIFY THE UNITS. So 4.0 ng/ml would be correct. Always take multiple readings and average them. Always specify the accuracy +/- 0.5 ng/ml, never report the result to more precision than the accuracy 4.12 +/-0.5 ng/ml would have been thrown back at me and rewritten as 4.1 +/-0.5 ng/ml.

I can't believe it when a doctor says "David your PSA is 28.2" I think where are the units what is the accuracy of that figure, why did you not take three samples at least a day apart, of course I don't make a fuss (well I did when they had the wrong name on the test, but that's another story). When I had urine retention the bladder scanner (once they found one which worked) showed 552cc of retention. Once it was drained it was actually just under a 990cc. Though the nurse actually wrote it down wrong as 440cc (but that's another story) 

So sadly I think we have to take these figures with a pinch of salt. They get things roughly right, and they don't have time or money to do the tests multiple times. So we have to put up with it. Maybe hubby's two ultrasound machines were calibrated differently. A 10% under reading on HxWxL would give a 30% reduction in volume. 

Calculating the size of the lesions can be simple, for me it was 95-100% in all 11 cores (they took 12 cores but lost one, that's another story) so though they may have missed some healthy tissue between the needles I think when they said 97% involvement they were about right. Of course when involvement is about 5% they may be missing cancer between the needles ,and it is well known that the TRUS biopsy is inaccurate for that reason. 

I wouldn't read too much into hubby's shrinking prostate it may have shrunk a bit, add that to maybe the first doc over measured it and the second under measured it and a halfing in reported size sounds plausible.

Dave

User
Posted 26 Feb 2020 at 01:09

Hi Bearsdaughter, it was a bit cheeky of me saying bear pit. I had just read Lyn's post, which came in as I was typing mine, and added the little bit at the beginning of my post. 

I'm a bit aspergers myself. So I know where you're coming from with the directness, I guess I've just learnt to tone mine down a little.

Anyway I'm glad you enjoyed the science bit. I'm never too sure how far to go with technical stuff. I'm sure you'll appreciate we are supportive here that's why we go through the effort of researching things for each other. And sometimes we try and add humour even if it doesn't always work. 

Edited by member 26 Feb 2020 at 14:41  | Reason: Grammar

Dave

User
Posted 26 Feb 2020 at 22:58

Hi Bear,

I think you're great. You, I and a whole lot of other people on here don't always 'get' each other. As you say it's a social media problem, face to face we would have got it. 

I just checked some earlier posts and found a bit about ciprofloxin, which you contributed to. Now I understand why I suddenly got tennis elbow, when I have never had tendon problems before. It even prompted me to file a yellow card report to MHRA. Just adds a bit more knowledge to their database, may help us all one day.

Your question about prostate size was worth while. Something similar will worry someone else one day, and as long as collectively members on this forum think "oh yes, I remember we talked about that a while back, it turned out not to be a worry, I can now provide reassurance to this new poster" then you and I and all the other members have made a positive contribution to the world.

So thanks to everyone on this forum we have a great database of posts, which sadly is not searchable in an easy way.

So keep posting, at least I will 'get' you next time, but it won't stop me making jokes about bear pits. :-) 

Dave

User
Posted 27 Feb 2020 at 19:25

Bollinge -thanks for your input-though I am not entirely sure what your point is?As pointed out before,I was neither looking for definitive answers,nor asking for predictions regarding what might serve either myself or my partner's mental or emotional health :) and since the (singular,NHS and seemingly pretty overworked) medic does not appear to be showing very much interest,we will be asking for a referral for second opinion..(even if we could afford harley street,that's not on the table..)which does not stop me from either doing my own research,or talking to other people.Not sure about you or others=speaking for myself,I tend to find Dr.Google (even though less endowed with a god complex than other Drs I have met) somewhat lacking in unbiased comprehensive knowledge as well as personality and empathy,so on the whole prefer to not consult him ..Best of luck to you too- a little less speculation regarding personal stuff like education/qualifications/sources of information,and a few more facts,should you wish to share them,might be interesting!

 

User
Posted 28 Feb 2020 at 14:59

Bear, I am (so far) a survivor of PCa, and I only engage with folk on this forum to pay back something of what people have contributed here to help me.

It is unfortunate that you didn’t establish any rapport or receive any empathy with your consultant - get another one.

As to my ‘qualifications’, I have studied this disease (in the spirit of self preservation) intensely for over two years on a daily basis, and I can confidently boast that I know more about it than my own GPs and those of other men who I assist with hospital appointments - although I have never stuck my clitty finger up another man’s bum!

I was with a friend aged 87 with metastatic PCa on Tuesday at the oncology department, and the consultant briefly advocated a biopsy. When I asked him what kind of biopsy they use currently at that hospital, he didn’t know!!!

So it will all pan out in the end, and remember, our Matron (Lyn) is the fount of all knowledge on this subject.

Best of luck for the future.

Cheers, John.

Edited by member 28 Feb 2020 at 15:40  | Reason: Not specified

User
Posted 28 Feb 2020 at 23:17
I wrote quite a detailed account with examples of differences experienced in my case between consultants at major hospitals in their diagnostic findings and willingness to treat. This almost finished post suddenly disappeared for some annoying reason. I wanted to show how difficult it could be for clinicians to sometimes assess and treat patients appropriately as individual cases with the far from perfect tools at their disposal and that colleagues within the same hospital could take different views on this and from those at other hospitals too. It should not come as a surprise therefore why we can sometimes find it difficult to answer questions raised and it is best left for doctors to try to explain or justify their differing opinions.

I will only briefly add my most recent example. Just over a year ago I had an appointment with the widely regarded top focal specialist in the UK. He said they definitely would not administer further treatment to my Prostate as it had already been subjected to two radical forms of treatment and as PSA increased I would be offered HT, something I wanted to avoid if possible. More recently, I asked whether I would be a suitable candidate for another treatment where the lady who previously gave me HIFU was the Chief Investigator.

She did give me a call saying I was not eligible due to my previous treatment but much to my surprise said she would administer further HIFU if the cancer had not spread to the seminal vesicles albeit with increased risk of an anal fistula. An MRI has been arranged for next week.

Barry
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User
Posted 25 Feb 2020 at 20:42
Prostate size is only an estimation.

The size of the suspicious area is based on data from the biopsy cores - the size of visible lesions is a bit irrelevant as they don't know whether the lesions are cancer.

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

User
Posted 25 Feb 2020 at 21:05

Estimate-within what tolerance levels?1%?10% 25%? I appreciate it's not exact-but if the difference can be as much as half/double the size-why even bother giving the numbers?and surely,a rapidly growing prostate would account for higher PSA levels-so size relevant? I do not understand how the SIZE of suspicious area is based on data from biopsy cores??since there was only 7% involvement,deemed gleason 3+3, within ONE of the tiny shreds of tissue that were removed,therefore the size is determined by??? subsequent MRI showed several suspicious areas,some of them 2mm or more,which,as you rightly say, are unknown quantities as far as knowing for certain whether cancerous or not/likely to spread or not-yet to us far from irrelevant,as,if seen to be enlarging on subsequent MRI's-(surely,the whole point of more MRI's is to track potential change/enlargement???)they might merit further investigation..

User
Posted 25 Feb 2020 at 21:13

So,going back to my original question-has anybody else encountered MRI results pointing to a rapidly halving in size prostate (without the use of hormone treatment or other prostate shrinking medication),or any other discrepancies between two scans,done with 6 months interval?

User
Posted 25 Feb 2020 at 21:17
It is an estimated volume - it is subjective and the size of the prostate can change, anyway. Perhaps there was a bit of inflammation at the previous scan. It would be a bit different if the result was 'this prostate is 2cm long' but that isn't how they do it.

Assessing how big the cancerous area is, based on biopsy cores is more difficult if there is only one core. But how far down the core it is and what the cores immediately around it showed are both long standing methods of estimating how much of the prostate is affected.

PSA production isn't necessarily directly proportional to the size (or growth rate) of the prostate. PSA may be a more reliable indicator of how active the cancer is, in which case a rise from 8-12 to 15 suggests not much is changing

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

User
Posted 25 Feb 2020 at 21:30

Ok-so prostate size can change- down,as well as up?I knew about the up.. any particular reason for the down?this is new to me..has this been documented,or is there anywhere I can read up on this please?And please explain the difference between saying '2 cm long',and '22mls'??how DO they measure/give/estimate the size?and how do they measure size of lesions??(which were given in precise numbers,stated as 'seen')..so much that I can't make sense of..the other thing that puzzles me is how anybody can possibly estimate cancer volume by randomly sticking 10 to 12 needles into something the size of a grape/plum/apricot or thereabouts-which is likely to check about-what,maybe 3% of the whole thing,whilst missing the rest?? (whilst also not checking a large part at all-unless needles can go round corners???)

User
Posted 25 Feb 2020 at 23:52
I was trying to be helpful - I had forgotten how angry you are. Ask your doctors - I am sure they will explain it. Or you could read the PCUK toolkit again.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Feb 2020 at 00:07

Hi Lyn, well I'm going to venture into the bear pit and try and be helpful. 

This article does refer to decreasing size. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5003410/

This article gives you the formulae for calculating size based on measurements

https://ro-journal.biomedcentral.com/articles/10.1186/1748-717X-9-200

Only bother reading the rest of this post if your interested in science. 

I studied physics to degree level. We were taught how to measure things and how to report results. If I had handed a piece of work in and specified psa as 4.0 I would have got shot. ALWAYS SPECIFY THE UNITS. So 4.0 ng/ml would be correct. Always take multiple readings and average them. Always specify the accuracy +/- 0.5 ng/ml, never report the result to more precision than the accuracy 4.12 +/-0.5 ng/ml would have been thrown back at me and rewritten as 4.1 +/-0.5 ng/ml.

I can't believe it when a doctor says "David your PSA is 28.2" I think where are the units what is the accuracy of that figure, why did you not take three samples at least a day apart, of course I don't make a fuss (well I did when they had the wrong name on the test, but that's another story). When I had urine retention the bladder scanner (once they found one which worked) showed 552cc of retention. Once it was drained it was actually just under a 990cc. Though the nurse actually wrote it down wrong as 440cc (but that's another story) 

So sadly I think we have to take these figures with a pinch of salt. They get things roughly right, and they don't have time or money to do the tests multiple times. So we have to put up with it. Maybe hubby's two ultrasound machines were calibrated differently. A 10% under reading on HxWxL would give a 30% reduction in volume. 

Calculating the size of the lesions can be simple, for me it was 95-100% in all 11 cores (they took 12 cores but lost one, that's another story) so though they may have missed some healthy tissue between the needles I think when they said 97% involvement they were about right. Of course when involvement is about 5% they may be missing cancer between the needles ,and it is well known that the TRUS biopsy is inaccurate for that reason. 

I wouldn't read too much into hubby's shrinking prostate it may have shrunk a bit, add that to maybe the first doc over measured it and the second under measured it and a halfing in reported size sounds plausible.

Dave

User
Posted 26 Feb 2020 at 00:16

Interesting reply Lyn..so,asking repeatedly (and politely) for explanations,as well as stating that I feel puzzled,cannot understand something,and things are new to me is being angry?I appreciate your trying to be helpful by getting back to me-even though it was not with an answer to my original question..'ask your doctors,I'm sure they will explain it'-not helpful ...

User
Posted 26 Feb 2020 at 00:45

Why bearpit,Dave?I was given to understand that this is a support(ive) group?I appreciate your reply immensely-That IS helpful-and yes,very happy to read all of it- thank you!! (also from partner,who is reading this over my shoulder..) I love reading up on the science..and yes-could be due to accumulated small discrepancies/errors/calibrating differences=also forgot to say that first 3 MRI's done on 5T machine,last one on completely different 1.5T one..though,when I asked the consultant (sorry Lyn-our GP would not have a clue,so no point in asking her),he stated that should not make any difference-(would he know?)

Just one more  bit of info-I take things very literal a lot of the time,and can come across as short or brusque,as I sometimes forget to put conversations/asks through expected (suitable submissive to hierachy/status/pecking order of an already established group) filters,and just plow straight in with questions..some people may also interpret my drive to connect with/compare stories and experiences with other's,coupled with scepticism over/curiousity as to true meaning/motives behind established beliefs/standard practices/ in all sorts of ways,including 'angry','weird',.'different'..etc..this,along with other things, often make me prefer my own (or the dog's) company to other people's,It doesn't make me not interested in other people, and I don't lack empathy either-I just don't 'get' people a lot of the time,and often people don't seem to 'get' me..So please try not to judge me-and if you apply any label,make it an aspie one...

User
Posted 26 Feb 2020 at 00:52

And the article documenting sheer variety in prostate enlargement/shrinkage with advancing age-just comes to show..so much neither we nor them know for certain!

User
Posted 26 Feb 2020 at 01:09

Hi Bearsdaughter, it was a bit cheeky of me saying bear pit. I had just read Lyn's post, which came in as I was typing mine, and added the little bit at the beginning of my post. 

I'm a bit aspergers myself. So I know where you're coming from with the directness, I guess I've just learnt to tone mine down a little.

Anyway I'm glad you enjoyed the science bit. I'm never too sure how far to go with technical stuff. I'm sure you'll appreciate we are supportive here that's why we go through the effort of researching things for each other. And sometimes we try and add humour even if it doesn't always work. 

Edited by member 26 Feb 2020 at 14:41  | Reason: Grammar

Dave

User
Posted 26 Feb 2020 at 03:21
bearsdraught

There are only a small number of regularly active members on this forum and we have neither a urologist nor an oncologist. We had a GP but he stopped posting quite a long time ago. Nevertheless, through their accumulated experience and research, members have done their best to support each other and new members and have been thanked for this on numerous occasions for the time they devote to doing this. In fact it is exceedingly rare for anybody to question whether this is a support group and I think you have been disrespectful to Lyn who has the broadest knowledge of PCa on this forum and contributes the greatest number of posts. She gave you her best advice and rightly suggested you seek further clarification from a consultant (rather then to press for a more detailed answer from an unqualified forum member). You may find that even professionals sometimes find it difficult to explain things and certainly can disagree between themselves as I have experienced.

There is no pecking order on this forum, where did you get the idea there was? Everybody is free to comment as long as they stay within forum rules. Furthermore, it is understood that some people are demonstrably more upset due to the ramifications of PCa on themselves or their families and can be inclined to rant but not at somebody trying to help them.

I have a Granddaughter who is in the autistic spectrum (not implying you are). She was naturally, curt, took everything literally and found it hard to understand a joke or a play on words but now has an interactive job with the public and relates very well with them although it means she has to sometimes curb her natural attitude which is necessary if selling to the public or seeking help as here.

Barry
User
Posted 26 Feb 2020 at 16:36

I don't intend,nor was aware of giving anybody a hard time! I was asking questions-initially as to whether anybody had any personal experience,or knew someone who has..maybe it was presumptious-yet I feel if no questions are posted,no answers will be forthcoming?I appreciate (and think I voiced that) people coming forth with replies,even when they don't all appear to answer the initial question..I was not expecting any urologists or doctors to reply (though I can never be sure who might be reading,and maybe commenting-as you say,there was a GP at some point!),and also realise that I might be trying to dig deeper than what knowledge or experience is available for sharing on here..It is extemely unlikely for us to get any answers from our GP,who is extremely kind,but aware of the limits of her knowledge-the one consultant we get a 15 min at best timeslot with(a 90 minute journey from home) barely allows us those 15 mins per visit-which is not enough to ask,let alone get answers I can understand ..so if I had that opportunity,I would sure have used it..at no point do I wish to imply that member's answers aren't 'good enough'-I appreciate it when somebody is taking time to reply-'ask your doctor,I'm sure they will explain' ,in our case,just has not got us anywhere-so,whilst a potential option, not helpful.(which was not meant as a put down to Lyn,if it was taken as such,apologies!)Asking for links/articles/studies I could read in my own time,to back up what information members offer (no need for chapter and verse) I would consider a good thing,also potentially useful to others to peruse?-and I do not understand where or how this can be taken as 'being angry'.,or 'ranting'..And finally,I was immensely grateful for Dave64's comprehensive reply,complete with attached article-which was interesting and I found helpful..

 

User
Posted 26 Feb 2020 at 17:36

Thank you-yes,I think I understand a lot of what you say..social media can be a very convenient way of sharing information,yet can also be a minefield-tone and emotion lost,or open to misinterpretation-..add to that my limited computer ability (I finding it a bit challenging to negotiate the website easily,not sure whether I'm even posting in the most apt section..) and the fact that I've spent a lot of my life trying to 'tone down' in order to fit in or be able to have normalish conversations (as I said,often I don't get people,their expressions,style of communicating or intentions-and yes,aspergers spectrum)-and not always managing it..does that make me angry?maybe ,at times,certainly very frustrated..the 'pecking order' bit (which was not helpful to the conversation,was merely intended to put a frame around past experience on here) stemmed from that-there was a thread, previously,which unnecessarily turned rather personal and a bit vicious-as far as I could tell none of the posters new to the site like myself..unnecessary,not helpful,several  posts ended up edited by moderators-(on one post I was told that people on the whole really did not care or weren't that interested in what I was trying to find answers to)..My guess is hence Lyn's reference to 'I forget how angry you can be'? On balance,,I also had some very kind and helpful replies,which encouraged me to post again..As always,people are free to scroll past if not relevant to them-I do not expect nor ask anybody to supply easy answers,nor blame them for posting stuff that is irrelevant to our own situation whilst attempting to be helpful,nor do I want to disrespect anybody whilst sometimes-as respectfully as I am able to-pointing out that my experience differs to theirs.

User
Posted 26 Feb 2020 at 19:16

Anyway, Bear, maybe our Matron should have said she believed you were 'anxious' (completely understandable) rather than 'angry'.

In any event, getting into the minutae of prostate cancer and its sizing is not worth the bother. 

The key indicators are Gleason scale: x+y=z?, staging T?M?N? and PSA and its level over several months.

I understand that you would have liked a definitive answer to your original question, but the fact that no one has provided one means you are barking up the wrong tree.

Please refer to the parameters mentioned above.

Best of luck.

Cheers, John.

User
Posted 26 Feb 2020 at 22:58

Hi Bear,

I think you're great. You, I and a whole lot of other people on here don't always 'get' each other. As you say it's a social media problem, face to face we would have got it. 

I just checked some earlier posts and found a bit about ciprofloxin, which you contributed to. Now I understand why I suddenly got tennis elbow, when I have never had tendon problems before. It even prompted me to file a yellow card report to MHRA. Just adds a bit more knowledge to their database, may help us all one day.

Your question about prostate size was worth while. Something similar will worry someone else one day, and as long as collectively members on this forum think "oh yes, I remember we talked about that a while back, it turned out not to be a worry, I can now provide reassurance to this new poster" then you and I and all the other members have made a positive contribution to the world.

So thanks to everyone on this forum we have a great database of posts, which sadly is not searchable in an easy way.

So keep posting, at least I will 'get' you next time, but it won't stop me making jokes about bear pits. :-) 

Dave

User
Posted 27 Feb 2020 at 14:03

please feel free to joke anytime-for me,not only enjoyable,but essential! :) contrary to common misconception,aspies often (if not mostly-who knows for certain??)DO have a sense of humour..

User
Posted 27 Feb 2020 at 14:44

Please see my previous comment- NOT expecting definitive answers,merely hoping to get the benefit of pooled knowledge and experience,as well as happy to share mine with anybody who might be interested..I was told by PCUK specialist nurse earlier that the questions I have are most certainly worth asking-as is getting a second or third opinion..cancer is a very individual thing,no two cases ever exactly the same..Somebody else said awhile ago that the only stupid question is the one you did not think to/take the opportunity to ask..

Gleason grades can be insufficient  indicators of both agressiveness and spread ,especially if a TRUS biopsy was done,(rather than an mpMRI first,as recommended by PCUK.)which at best only samples 3% of entire prostate.On top of that it is very much down to whoever looks at the slides to decide which grade to assign-human error and subjectivity come in to the picture..Have repeatedly spoken with people who's gleason was upgraded following surgery-and,given that,on the whole,PC often develops over many years, it appears unlikely that the supposed Gleason 6 suddenly morphed into a 7 or 8-it just happened to be missed by the blindly placed needles..PSA by itself also appears somewhat spurious-my partner's (and various other people's) tends to fluctuate.. (between 8 and 15 over the last three years-both up and down,so sometimes 4 or 5 points difference within a 3 month period..)There also appear to be several people on another forum where nothing was found after both mpMRI and several biopsies-yet PSA in the twenties or even thirties..As well as some with what is considered 'normal' levels,yet spread to lymphnodes or bones..Are those the 'exceptions'?I really don't know..But it does appear that there are few certainties..The guy who developed the PSA test,Richard Ablin,from what I read, never intended it to be used as a screening test,or indicator of PC-merely as a guideline to keep an eye on things POST SURGERY-as rising PSA might then be considered an indicator of PC remaining-just not in prostate,which isn't there anymore..

User
Posted 27 Feb 2020 at 16:48

re ciprofloxacin..partner had tendon as well as excruciating nerve pain for over two years following two lots of cipro..not able to tolerate pressure of bedclothes on his legs at times,cramps,unable to do yoga,limping,pins and needles..was horrified when I found out how common this appears to be-and that's just looking at the physical effects..there's even a coroner's report on a previously very healthy guy who hung himself shortly after being prescribed cipro..  https://www.judiciary.uk/wp-content/uploads/2017/02/Rendell-2017-0006.pdf   I fail to understand why,given the risks,and alternatives being available, it is still being prescribed..

User
Posted 27 Feb 2020 at 17:46

very much NOT the case,at least not in our experience-  as far as cipro and 'culture sensitive' goes-in my partner's,and anybody else unfortunate enough to be exposed to 'one stop prostate clincis' for starters-routine dip stick (which is far from culture being grown in lab,just a 2 min procedure, a bit worthless,as it merely ,sort of,might show whether there is an infection)prior to being rushed into TRUS biopsy..minutes before he was handed a tablet,was unaware of what he was taking,the dirty deed done within less than 20 mins,and then given some more to take at home..and then prescribed another course once he developed a raging infection day after procedure..they are routinely used as 'prophylaxis' in this particular clinic and others too.. I have spoken to people who were given them for SUSPECTED,(not even confirmed) UTIs,ear infections,in eye drops-all without cultures being grown..am aware that in some places they do a rectal swab before biopsy,to establish whether cipro might be effective or not-but not many that I am aware of..

User
Posted 27 Feb 2020 at 18:43
Bear,

Unless you are studying for a degree in urology together with a specialty in proctology, might I suggest once again that you chill out and wait for professional opinions from your partner’s medics.

We all consulted Dr Google once we had a hint of a ‘Big C’ diagnosis, of course, but you seem to have advanced to a post-graduate level. It will do you or your partner no good and cause more anguish than necessary if you continue.

Best of luck as ever,

Cheers John.

User
Posted 27 Feb 2020 at 19:25

Bollinge -thanks for your input-though I am not entirely sure what your point is?As pointed out before,I was neither looking for definitive answers,nor asking for predictions regarding what might serve either myself or my partner's mental or emotional health :) and since the (singular,NHS and seemingly pretty overworked) medic does not appear to be showing very much interest,we will be asking for a referral for second opinion..(even if we could afford harley street,that's not on the table..)which does not stop me from either doing my own research,or talking to other people.Not sure about you or others=speaking for myself,I tend to find Dr.Google (even though less endowed with a god complex than other Drs I have met) somewhat lacking in unbiased comprehensive knowledge as well as personality and empathy,so on the whole prefer to not consult him ..Best of luck to you too- a little less speculation regarding personal stuff like education/qualifications/sources of information,and a few more facts,should you wish to share them,might be interesting!

 

User
Posted 28 Feb 2020 at 14:59

Bear, I am (so far) a survivor of PCa, and I only engage with folk on this forum to pay back something of what people have contributed here to help me.

It is unfortunate that you didn’t establish any rapport or receive any empathy with your consultant - get another one.

As to my ‘qualifications’, I have studied this disease (in the spirit of self preservation) intensely for over two years on a daily basis, and I can confidently boast that I know more about it than my own GPs and those of other men who I assist with hospital appointments - although I have never stuck my clitty finger up another man’s bum!

I was with a friend aged 87 with metastatic PCa on Tuesday at the oncology department, and the consultant briefly advocated a biopsy. When I asked him what kind of biopsy they use currently at that hospital, he didn’t know!!!

So it will all pan out in the end, and remember, our Matron (Lyn) is the fount of all knowledge on this subject.

Best of luck for the future.

Cheers, John.

Edited by member 28 Feb 2020 at 15:40  | Reason: Not specified

User
Posted 28 Feb 2020 at 22:46

thanks again for your input-I was referring to you speculating about MY qualifications :) but thank you for sharing yours,I appreciate it..my partner (along with countless other people,quite a few more than likely not even aware of the presence of PC-sometimes this may be a good thing..) is also one of the people living with PC-though I doubt he would call himself a survivor..we simply don't know for sure what it is he is living with,what sort of treatment (if any,he has had none so far bar monitoring-with ambiguous results,it seems to us) he might consider/look into-so I guess we are /have been pretty lucky compared to others..I too have been studying and looking into it in detail for the last three years,a lot of it in the spirit of inquisitiveness,as well as wanting nobody else to experience what we went through as far as diagnosis and subsequent treatment by health professionals goes..

User
Posted 28 Feb 2020 at 23:17
I wrote quite a detailed account with examples of differences experienced in my case between consultants at major hospitals in their diagnostic findings and willingness to treat. This almost finished post suddenly disappeared for some annoying reason. I wanted to show how difficult it could be for clinicians to sometimes assess and treat patients appropriately as individual cases with the far from perfect tools at their disposal and that colleagues within the same hospital could take different views on this and from those at other hospitals too. It should not come as a surprise therefore why we can sometimes find it difficult to answer questions raised and it is best left for doctors to try to explain or justify their differing opinions.

I will only briefly add my most recent example. Just over a year ago I had an appointment with the widely regarded top focal specialist in the UK. He said they definitely would not administer further treatment to my Prostate as it had already been subjected to two radical forms of treatment and as PSA increased I would be offered HT, something I wanted to avoid if possible. More recently, I asked whether I would be a suitable candidate for another treatment where the lady who previously gave me HIFU was the Chief Investigator.

She did give me a call saying I was not eligible due to my previous treatment but much to my surprise said she would administer further HIFU if the cancer had not spread to the seminal vesicles albeit with increased risk of an anal fistula. An MRI has been arranged for next week.

Barry
 
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