Terrified of pending diagnosis

Thank you so much for your reply.

I should have said, we're in the UK, so basically under the National Health Service you don't get to choose your specialists, you're allocated one of the team that oversee your local area.

He doesn't have a date for the biopsy yet, but has requested that it be performed under a general anaesthetic. Would there be any advantage in having it done under local anaesthetic, which might also be a possibility ?

I see, you're in the UK. NHS, noted. Your NHS I understand is similar to a few around (Israel and a middle European country whose name I forgot).

All things considered, it is very well regarded.

As for me, I am in Australia.

I am glad you took on my points.

As to a biopsy, ask, no, demand a transperineal biopsy and not a trans rectal biopsy as the former is MUCH better tolerated given the LESS complications that arise from transperineal than trans rectal biopsies.

In particular there is a lower risks of urosepsis with the transperineal approach. After all, the former fires needles into the prostate from below whereas the trans rectal approach is from the rear, with risks of infection.

If possible, try to book in for an ULTRA SOUND guided tranperineal biopsy as this is very accurate. Let me explain: the biopsy, be it transperineal or trans rectal fires needles into the prostate so as to establish the degree of cancer that is found on tissue samples removed from the prostate by the needles when they are taken out. That is to say, when the needles are removed, so too are little bits of tissue that may or may not have cancer cells on them.

Without an ultrasound to guide the needles, some needles may hit the cancer known to be lurking in the prostate and some may not hit it. Possibly none will hit the cancer. If that is the case, it is pretty darn hard to determine the degree of cancer in the prostate.

But with an ultrasound machine to locate and guide the needles, the needles will land in the correct part of the prostate. Then, when removed, they will be found to have collected tissue samples containing the cancer and more to the point, the degree of clinically significant cancer i.e. how much and what grade, can be established.

As to the anaesthetic (local or general), I cannot recall what I received and suggest you be guided by the urologist treating your husband. Assuming you trust him, give him your husband's full medical history (recent procedures etc) and ask him (not the anaesthetist) to advise on the anaesthetic.

Good luck.

Given his age is north of 70, I would agree that anything but surgery is preferable.

I cannot speak about brachytherapy as i did not have that.

What I can say is that Gleason 4+3 warrants treatment. Unlike say G3+3 which does not.

I forgot to ask: did any report mention if the disease was "local" or "locally advanced"?

A physiotherapist who instructs in pelvic floor (also known as KEGEL) exercise may help.

Just to clarify one point you made:*

I was led to believe robot assistance was to be used but this was not the case.*

It is my understanding from the research that the key to the best possible outcome is the surgeon's skill and not his fancy equipment. For instance a better outcome is more likely to be had from a surgeon with 25 yrs experience with open prostateciomy surgeries than from a guy with 2 years of robot assisted surgeries.

As to your point on data: I think the medical profession wants data that makes them look good. Most cancer statistics stop at 5 years post treatment, because many pass away after that and recording the number of deaths cannot be good for business.

TO BARNEY18 MAY 2021

Thank you Barney. Your comments on experience vs new technology was a little helpful for me going forward. I had a noted Urologist from 1990 to 2015 and I had developed concerns at what I saw as a stuck in the mud approach. My many years on Prazosin/Flomaxtra followed up with Prazosin + Duodart which took my Alpha Blocker dose to twice the then researched level caused me concern post RP. I also learned post cancer that there was at the time a possible increased risk of serious PCa from Dutasteride/Finasteride use. While many in Australia were prescribed the medication approach some were taken down the TURP road. Post RP I find on this site so many other BPH options not considered at all here.

When my GP, who had gone down a similar BPH/PCa route, recommended MRI for a relatively small PSA increase my Urologist strongly resisted for more wait and see. Our persistence saw him reluctantly agree to a MRI that was not supported by the Australian government at that time. The 2 positive cores detected in the MRI then called for a biopsy which was referred to a younger Urologist for some reason. I looked up the new guy on the internet which included a glowing assessment of his training and expertise in robotic prostate surgery.

The new Urologist generated much more confidence in me and I arranged for my GP to transfer my treatment to him. As previously said I assumed his expertise in robotics meant that was how he operated THEN. At a cystercopy following a botched post-surgery blockage treatment I asked an assistant where the robot was and he pointed to the surgeon and laughed. I subsequently learned that at the time a Dr Stricker in Sydney would have been my only robot option. That option would have needed a personal uninsured $20,000 contribution which in hindsite, in my view,

would have been well worthwhile.

Before the op I believed that would be far less of a burden than the radiation path. The op itself was not that bad and the discomfort bearable. The hospital staff erroneously pumped me with bags of fluid to counter a lack of catheter volume. The excess went straight to my scrotem which was already bruised and inflamed. They soon got me up walking unsupported and after catheter was removed I developed severe fungal infection there that could not be treated. My subsequent request for re-catheterising was refused by urology over emergency doctors initial compliance. I was left to just suffer for weeks. Uridoms just lifted off as pieces of flesh still coming away in urine fowled the heads.

Several friends have since had robot surgery performed by my surgeon with almost no post-op problems or incontinence. Mine go on and on. My forum visits have led me to believe Australia's prostate treatment is sub-standard with many options not even looked at. I believe if anyone was collecting any worthwhile data they would learn that open surgery by the world's best old time surgeon would be far more evasive and quality of life destroying than today's robot use. We will never know for as you say no one wants to learn. You didn't comment on the possibility of PCa spreading capacity of prostate biopsies. I read they know this does not eventuate because the survival rate from pancreatic cancer biopsies is the same as those that refuse the biopsy. I recall the initial change of opinion over ultrasound capacity. I doubt I would have liked to opt for surgery or radiation with just MRI conclusion. When they say we have to assume PCa will return in other organs or bones anytime in the next decade I don't know if I really wanted them poking positive cells and all that subsequent bleeding either. I feel men are being terribly let down here.

I guess things are on the improve and I guess I was just in the wrong time frame.

Barrie H

Below I will quote your comments and follow them with my opinion.

*

"I had developed concerns at what I saw as a stuck in the mud approach".

*

Very true. Few doctors want to learn new tricks. They p[refer keeping to what they know regardless of the success rate or the suitability for the patient. For instance, I have a tutor in the hand and two surgeons I saw want to operate forthwith.

I read in an orthopaedic journal (that I subscribed to) of new therapies other than surgeries that have in some cases shown to be as effective as surgery but without the trauma.

If course these two fine gents poo-pooed that idea. After all, they are paid to butcher aren't they?

*

"My many years on Prazosin/Flomaxtra followed up with Prazosin + Duodart which took my Alpha Blocker dose to twice the then researched level caused me concern post RP. I also learned post cancer that there was at the time a possible increased risk of serious PCa from Dutasteride/Finasteride use". *

I used none of these medications so cannot comment.

*

While many in Australia were prescribed the medication approach some were taken down the TURP road. Post RP I find on this site so many other BPH options not considered at all here.

When my GP, who had gone down a similar BPH/PCa route, recommended MRI for a relatively small PSA increase my Urologist strongly resisted for more wait and see. "Our persistence saw him reluctantly agree to a MRI that was not supported by the Australian government at that time".*

I heard that only in the last year or two are probate MRIs covered to some degree by medicare. Previously we had to pay through the nose!


"The 2 positive cores detected in the MRI then called for a biopsy which was referred to a younger Urologist for some reason. I looked up the new guy on the internet which included a glowing assessment of his training and expertise in robotic prostate surgery".

I always say that if you have surgery, ensure the biopsy is performed by the guy you want to operate on you as few of them will operate with a biopsy performed by someone else.

"The new Urologist generated much more confidence in me and I arranged for my GP to transfer my treatment to him. As previously said I assumed his expertise in robotics meant that was how he operated THEN".

You must be confident in the choice of surgeon.

*

"At a cystercopy following a botched post-surgery blockage treatment I asked an assistant where the robot was and he pointed to the surgeon and laughed. I subsequently learned that at the time a Dr Stricker in Sydney would have been my only robot option. That option would have needed a personal uninsured $20,000 contribution which in hindsite, in my view, would have been well worthwhile".

*

Such doctors charge a great deal and I doubt an insured patient would get off much cheaper than your quote. After all, m/care pays 75% of the scheduled fee and private insurance pays 25% of the scheduled fee. A could of years ago I recall such surgery was priced by the gov't at $3,700 or so, so even with insurance one would pay a great deal, with no guarantees.

"Before the op I believed that would be far less of a burden than the radiation path. The op itself was not that bad and the discomfort bearable".

If surgery is an option I think it should be considered because you can always have RT afterwards if need be. You cannot do RT and then surgery.

"The hospital staff erroneously pumped me with bags of fluid to counter a lack of catheter volume. The excess went straight to my scrotem which was already bruised and inflamed. They soon got me up walking unsupported and after catheter was removed I developed severe fungal infection there that could not be treated. My subsequent request for re-catheterising was refused by urology over emergency doctors initial compliance. I was left to just suffer for weeks. Uridoms just lifted off as pieces of flesh still coming away in urine fowled the heads"

I am very sorry to hear of your woes, but some things are just "bad luck". I experienced similar bad luck with other surgeries. That said, robotic surgery in the hands of someone who has done hundreds is a safe bet. Or should I say, is the safest bet you can make given there are always issues beyond your control.

*

"Several friends have since had robot surgery performed by my surgeon with almost no post-op problems or incontinence. Mine go on and on. My forum visits have led me to believe Australia's prostate treatment is sub-standard with many options not even looked at". *

In hindsight, I agree. In the US and UK there are dozens of options. In Australia these will be available only when there are physicians skilled in them. Until that time, these physicians will push their own treatments only.