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My Story - Darryl Baillie


DarrylB

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In May 2010 my PSA rose to 4.5.

My GP referred me onto a Urologist in Brisbane, he recommended a prostatectomy as a "cure it once and for all" treatment. He quickly suggested robotic surgery and a colleague of his was getting quick at it and could do two procedures a day... and I would be back at work in 2 weeks. ( I am an electrical contractor.)  The downside was it would cost me $4000.00 more than open surgery.  The benefits were 1/2 inch incisions faster return to work and better outcomes.

 

The new Urologist interviewed my wife and I the day before my fatal choice and did not deny any of the claimed benefits of the surgery.  He even claimed I would have erections after I had healed. He said erections could take up to 2 yrs to return. Importantly the quality of erections would be about 70% of what they were before surgery. As I was 54 yrs old and had excellent function I believed I would have nothing to lose.  My Gleason 6 cancer was going to be cured once and for all and I would still have good sexual function, couldn't ask for more... so I thought!.

Into surgery I went never thinking I would have any serious issues ... it was my first serious procedure and I was naive about how bad things could turn out.  I was never really told about the hideous complications robotic surgery has.

On 1 September 2010, I awoke after surgery with mild discomfort at the surgery site but the catheter was screaming pain loudly in my brain. I complained about it and was told "you'll get used to it".

I was discharged on day 2 and was glad to get out of that hospital. It felt dirty and the nurses were very dismissive.

The catheter was absolutely a nightmare and prohibited me walking or even considering any exercise. The pain around my pelvis was increasing and made sitting almost impossible. On day 8, I almost had to crawl to the surgeons private practice to have the catheter removed and it is difficult to describe the pain as the catheter was ripped out by the practice nurse.

I was checked over and told to go home. I was told the Surgeon would contact me in 7 weeks to see how I was going.  At 7 weeks I was not back at work and now had Urinary tract damage from the catheter, Urinary tract infection, bladder infection and left kidney infection.  12 weeks of "dial up" antibiotics to clear it up!

My right hip had torn ligaments from being poorly supported during surgery and pudendal nerve damage caused by entrapment in the ligaments that were torn.

This was only the start of a long journey of medical issues that just kept on coming.  All the time after surgery my bladder area continually hurt and the surgeon was attempted to be contacted but it was difficult to get through the firewall created by his Office. When I finally went to see him again 2 months later he sat in his chair looking blankly into his computer claiming my surgery was silky smooth and bog standard. He didn't know what was wrong with me but he had had it happen to 3 of his patients before!!  I knew he was a total waste of space and I had been conned by the two Brisbane Urologists.

At about 10 mths my 55 mm umbilical incision site split internally. (whatever happened to the 1/2 inch incision?? The other six incisions were 1/2 inch long except for this one?)

another $7000 or so dollars and two more months off work to have my stomach filled with mesh (150mm X 200mm) across my midline and I was told the inflation pressure used during my surgery had caused a permanent diastasis recti (over stretched stomach muscle structure). 

My urinary control was poor and pain was my only signal I could use to know when to urinate.  If ignored involuntary release would occur whenever and ROBOTIC PROSTATECTOMY SPREADS PROSTATE CANCER CELLS.pdfwherever I was.

At about 15 months post surgery my PSA started to rise... surgeon said in writing to my GP that it was caused by a "cross reactivity to circulating kallikreins". If you don't know what this means don't be to concerned as nobody else knows what it means either. Other Urologists were consulted to seek out my rising PSA and I was given the following answers; microscopic metastic prostate cancer, prostate tissue regrowth and finally recurrent prostate cancer.

The bladder pain was getting unbearable and it extended into the anus area. An ultrasound organised by my GP at 2 1/2 yrs revealed I had a surgical clip gnawing its way through my bladder next to the left uteric jet.  My latest Urologist referred my onto an excellent surgeon to have it removed, meanwhile I excreted another clip that was gnawing its way through the bowel next to my anus.  The surgeon who removed the clip using a cystoscope photographed yet another clip bulging the trigone area of my bladder  and said he would leave it until it finally came through enough to make it easier to remove. I have been informed 24 clips have been used in my surgery and I know where 3 are. It is hard to believe 24 clips can be used in an area the size of a hens egg!!

According to internet data Hemolok surgical clips (large) used in robotic surgery can migrate up to 7.5 yrs after insertion and anyone trying to dismiss the pain and distress they cause as trivial has not had it happen to them!

I now feel the similar pain to the first episode and have arranged for another ultrasound, I believe the trigone area clip is moving.

In August 2015 my PSA had risen to .12 and I was officially informed I had recurrent prostate cancer and there was nothing could be done except wait until either I felt pain or my PSA rose to 25 before having any further treatment.

I am now trying all alternate treatments before I will consider any Dr related advice...

I am now 59 yrs old and I still have stress and urge incontinence, mild bladder pain, stomach muscle wall atrophy on the right side, a permanent diastasis recti, severe ED with a shim score of 8/25.

To date I have lost more than 14 weeks continuous time off work with numerous days in between for tests etc and paid out in excess $40,000.00 in out of pocket medical expenses. I have lost quality of life and still have prostate cancer.  This bad decision has left me struggling to work and now financially distressed, the only people who have benefited have been the doctors.

Then to rub salt into my wounds I find out that my complications are normal in many cases in the USA!! and I was lucky I didn't have more!

I have just read an article by Dr Bert Vorstman explaining how robotic surgery spreads cancer cells and I now have an answer for my simple gleason 6 cancer escaping somewhere into my body. (see attachment)

Robotic surgery was the worst decision of my life and no doubt will finally cost me my life.

 

 

 

 

 

 

 

 

 

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Charles (Chuck) Maack

Dear Darryl Baillie,

 

Yours is a horrendous story of medical malpractice and should at least be reported to those authorities in Australia who are responsible for overseeing physicians licensed to practice medicine.

 

You advise your Gleason Score was only 6.  A major problem in the past likely worldwide but certainly noted here in the U.S. was the “over-treatment” being administered by Urologists as well as Radiation Oncologists when a patient was diagnosed with prostate cancer.  They would put fear in the patient that the cancer, no matter is level of development, required “immediate” treatment.  It is only in the last now four years – in our case here in the U.S. following a review by a panel known as the United States Preventive Services Task Force (USPSTF) took issue with this over-treatment having studied a history of patients with Gleason Score 6, very low cancer development, being pushed to surgical removal or radiation when their cancer development was near insignificant and even if there were further development, that development could be many years in the distance.  Like you, way too many men had to experience the side effects that can come from surgery or radiation when they could merely had periodic lab checks to keep track of their status.

 

What is extremely unusual are the abundance of issues you have experienced.  The catheter issue sounds like the catheter was inserted likely without a lubricant as well as by someone obviously inexperienced in that insertion in view of the injury done to your urethra and the significant pain you experienced.  And then, when the catheter was removed (which, incidentally, is a quick pull), the injury from the insertion still existed thus the continued pain.  And, it appears nothing was looked to or medication prescribed at that point for the pain you were experiencing and healing of the urethra. 

 

The subsequent hernia at one of the incision locations (or more?) is an obvious indication the physician failed to appropriately suture the closure.  This and all your experiences appear signs of malpractice.

 

The encouragement by this physician to immediate surgical removal appears to indicate he did so more to “get his numbers up” as a surgeon likely just learning the administration of Robot assisted Laparoscopic Radical Prostatectomy (RaLRP) and even more likely that he really was at the very beginning of using the equipment and not adequately trained as well as not having present during the surgery a surgeon more experienced and qualified to observe and direct.

 

The number of surgical clips used also appears to indicate the ineptitude of this physicians expertise following robotic surgical removal of the prostate gland.

 

For what it is worth, and being here in the U.S. monitoring several prostate cancer websites and patient online support lists, I have not found what you have experienced being prevalent here, as you remark.  I have also not read of sufficient experiences of RaLRP causing cancer cell spread as the doctor you note has claimed.  This might more likely occur when the procedure was administered by physicians with inadequate training and experience where rather than correctly separating the prostate gland - if the cancer was considered contained within that gland - the gland was punctured in any way during the procedure or during the process of  "bagging" the gland while still in the abdomen before pulling it out through one of the incisions (usually in the area of the belly-button).  Any chance that was the area of your hernia? 

 

I obviously feel bad that you have had to undergo this horrendous experience, costs well beyond what they should have been, loss of work and income, and the pain and suffering you continue to experience.  What I continue to recommend, Darryl, is your experiences should at the very least be reported to medical authorities who oversee possible malpractice.  If you have medical malpractice lawyers available, you might want to at least have a consultation with a reputable one to determine if you would have a case to sue for malpractice and recover those expenses you have had to, and continue to have to, absorb.  Wish I had more to offer.  I can only pray for your improvement and well-being.  Keep in mind, Darryl, that at my email address maack1@cox.net I am always as close as the other end of your computer to help address any prostate cancer concerns.

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I agree that it's a horrendous story

It's also the complete opposite result to my robotic surgery ( and my Gleeson score was 4+5 = 9 )

Reading some points from your post of - You will be back to work in 2 weeks

That is a preposterous claim

My surgeon said a minimum of 6 weeks but recomended 10' to 12 weeks to recover

Also not to carry anything larger than a milk bottle in the first 6 weeks and was very adamant about it or the surgery could be undone

So I adhered to his strict rules religiously

In 2011 when I had my robotic surgery it cost $12.000

The surgeon was very very thorough to the point of double checking everything before committing to the surgery

Especially on the care and precision that was needed to save the nerves

With regards to erections

Prior to the surgery I was referred to a specialist and a program was implemented to assist me from the fists day

No issues in having erections from the day I started the program on my return to home ( yes that means I was having erections while the urine tube was in place ) and to this day I have a min 95% to before the surgery

Having said that I did suffer with incontinence because of a weak sphincter and had to have a sling fitted with perfect results

It took about 2 years for my PSA to show a small rise and at that point my specialist wasted no time to refer me to have radiation in conjunction with hormone therapy

Again results are such that 1.5 years later my regular 6 monthly PSA check shows a negligible result of 0.008

Obviously I feel very sad with your experience but I agree with Chuck that at the very least to report your experience to the medical board as to possible malpractice

Paul

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  • 2 weeks later...

Hi Charles

Thankyou for your concerns, sorry about the delay in replying but it's quite a story.....

In answer to a few points you made... 

Yes, in hindsight I was “cannon fodder” for an incompetent deceptive Urologist attempting to be something he was not. I was his 186th patient with the robot and I believe he didn't know what he was doing.  The most disturbing factor I can think of is he failed to look after me as he was obligated to do. At the 2 month visit (that I wanted) he should of sent me to an experienced competent surgeon to be reassessed and treated.

In regard to the catheter, I queried who put the catheter in at the 7 week phone call, his reply was he didn't know, it would have probably been one of the juniors!! I have been told by another very experienced Doctor I met on a scenic river trip that I had a "rough surgery"  What I have found out is in the better surgery outcomes, the surgeon prescribes antibiotics upon removal of the catheter. At the time the nurse yanked the catheter out I screamed and it's one of the first times I have really seen stars, I asked is that pain usual and she gazed at the wall and said it was unusual but nothing was done about it.  The constant dribbling for the following weeks with a searing pain as the urine passed the area was a real distraction, I know I rang the clinic about 4 or 5 times and was put through to the nurse who repeatedly said to "drink Ural with plenty of fluids" At each time I asked whether she was sure it wasn't an infection and I was told no.

At about 3 weeks post op the pads were tinted pink and the pain was radiating into my bladder and left kidney. Again I rang the nurse and asked if some brands of pads contained a wetness indicator as the pads were bright pink.  She said go to your doctor immediately as you have a urine tract infection. I spat an insult her way for ignoring what I sort of knew was an infection.

My GP was quick off the mark and carried out urine tests and sent a sample to the lab. I was immediately prescribed "special" antibiotics that I had to take for 12 weeks. The bladder and kidney infection took a serious toll on my wellbeing and I was bed bound for about 5 days or so. My GP was able to gently inspect my urethra and said it was badly ulcerated, he also said the catheter can scratch the urethra in surgery.

At the time my stomach herniated I wrote the surgeon a pointed letter asking who stitched up the way oversize port (55mm), his reply by phone was it was either him or his assistant, in any case it would have been his technique, I reminded him that I paid for him for the job and his assistant was not to do anything that was critical to the success of my surgery. He wrote to my GP requesting that I get a general surgeon to repair my hernia. Another "no care" reply for getting his work fixed.

I approached a General Surgeon in Townsville and I could tell he was struggling to figure out how to repair it. The size of the bulge was a babys head size and it was protruding out above my naval.  No real pain associated with it but it was very unsightly.  I finally had Melbourne hernia clinic review it and that was when the cat was let out of the bag as to what had happened.  After the repair he told my wife and I that something had gone very wrong with my robotic surgery and the inside of my stomach was a mess.

The surgical clips story is a tragedy, I put up with that pain for about 2 ½ yrs with the surgeon only prescribing Ditropan as a solution, I understand the diagnosis to be an unstable bladder. The uncontrolled bladder symptoms and the ever increasing pain made me research the matter and I found my symptoms on the internet. I was about the 7th case I knew of at the time on the internet and my GP ordered an ultrasound only to reveal a “medical aetiology” protruding through my bladder next to the left uteric jet in the bladder. I can only say how impressed I was with the medical system to have the clip removed only to find another clip bulging the trigone area of the bladder and another clip was excreted through the bowel next to the anus... and that was uncomfortable! I wrote to the Theraputic Goods Administration complaining about the surgical clips and was told they have a migration rate of 1 in 10000. That equates to .0001% yet I have 3 in 24 clips gnaw their way through my body. They also added it was likely a Doctor problem adding to my suspicion that he was incompetent or he didn't do my surgery. I published this article on Cancer Compass and had quite a few people contact me with similar issues... not too rare at all. http://www.cancercompass.com/message-board/message/all,74403,0.htm

After continuing issues and frustration with my surgeon and the medical system in general, I reported the surgeon to AHPRA (Australian Health Practitioners Regulation Agency). The only thing I could see that he definitely breached in the Regulation was false and misleading information. The misleading information was a Da Vinci picture showing 5 small scars against an open surgery scar of about 150mm (6 inches). To my surprise I had 7 scars and one of them being 2.5 inches or 55mm long. About 10 months or so later my stomach lining split. Continued pain and never ending issues drove me to report him, I also mentioned that I didn't think he was competent to do this sort of surgery.

AHPRA took all of the details and sent the whole file to the surgeon for comment!!!. Of course he had his lawyers look at it and they told AHPRA to drop the case, and they did. I finally found out from a supervisor in AHPRA that a non performer of an employee had my file and many more on his desk and they had to finalise it and others before their time allowance for each case had elapsed.

I was not happy at all but that was about all I could do at the time. AHPRA have a duty to notify Doctors when a complaint is made about them and of course my fantastic surgeon wrote to my GP sacking me as a patient.... it really broke my heart!!! By that time I had engaged a new Urologist and he was shocked at how I had been left to fend for myself. In hindsight I only have myself to blame for my outcome, because the day before the surgery when my wife and I had our consult with the surgeon we asked what level of aftercare would he give me. His reply was he was only interested in my cancer. Why would I be worried?? I was going to be back at work in 2 weeks and continent in about 3 months and I would have erections again. How naive was I to believe all that crap?? (This was my first surgery)

After the clip migration issue I had lawyers look at my case. Firstly they had no knowledge of clips migrating during prostate surgery. But they did say that all of the other complications I had are known for robotic surgery and even though I had a lot it was more a concern to prove his negligence. It doesn't appear to be an offence that he is incompetent. I was informed that the only way a conviction or win can be established in Queensland is if the Surgeon was negligent. After quite a few months of waiting the Lawyers finally sought an opinion from another surgeon in another state and as I expected the answer was surgical clips do migrate and they are harmless!!!! The clips are used extensively and are more a benefit than anything else. Their was a good case for him failing in his duty of care but that's not an offence in Queensland.

At the end of the 5 yr mark I wrote the surgeon a letter advising of my progress including photos of my stomach with 6 small scars and on 8 inch (200mm) scar across my midline above my naval where the Melbourne surgeon tried to reconstruct my damaged stomach wall. And I wanted to know who actually performed my surgery as I could not believe he could produce a result like mine.

His lawyers replied stating I had all the information I was going to get and do not write to him again. I guess I asked for that?? But, it also gave me the answer I was looking for... because if he actually did my surgery, it would have been a simple answer to say so. The cleverly worded consent form I signed before surgery said junior staff may be involved in my surgery, even though I stated I didn't want them to perform any critical work that may effect the outcome, I'll bet they did and I was a privately insured patient. My guess is he was showing off and trying to get as many young surgeons up to speed with the robot to help the hospital pay the robot off.

The other point of significance is that he was inexperienced and older than 55 yrs old. It was reported in the “The Australian” 17 October 2015” surgeons older than 55 yrs old lose their eyesight and motor skills making them a high risk for patient safety. I am a good example of that outcome … assuming he actually did my surgery. I obtained copies of my medical records from the Hospital and it is amasing that other medical people I have consulted have stated that there is significant records missing. Hard to believe isn't it??

All I have is questions and no answers...

all the best

Darryl


 

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Hi Paul

 

It appears the surgeons all do their own thing... I repeat I was told I would be back at work in two weeks .... he knew what I did for a living, also when I saw him at about day 8 I asked what limitations I would have and his answer was "your body will let you know"....no restrictions whatsoever.

My surgeon was more interested in telling us about his experience in Nth QLD... I suppose it was his way of taking the worry about the surgery away from me.

He said he couldn't see the nerves and that they were like tissue paper around the prostate.

When I asked about the percentage of people who regained erections post surgery and that I had heard it was only about 40% he almost barked at us that I was wrong and that all men have erections but they would be about 40% hard and more like 70% hard these days....  He also said It may take up to 18 months to return. He went on to say that if no function by 2 yrs that there wouldn't be much hope after that, but that is very rare.  In the washup I received his best level of nerve sparing, there is about 4 levels he has and he uses his own terminology to describe them.

I rang him his office before the 12 months was up asking if I was normal with return of erections and was told "you'll know where you are at at 18 months" No indication what is normal or what to expect. At 2 yrs 2 months finally some small movement. I can now brag about a score of 8/25 (borderline severe ED - SHIM score) and I believe I am doing better than most men who have had robotic surgery.  All but one man that I know who have had robotic surgery are doing the same or worse than me, so I am normal. You are very lucky in that department...

 

I received a questionnaire at 12 months about continence and erections from the clinic. I rang and asked about the erections and the nurse said "don't worry, none of his patients have any erections at 12 months". I was not given any advice or information by the surgeon or clinic about rehabilitation. Remember, my surgeon was only interested in my cancer.  When my PSA started to rise I was informed it was a "likely a cross reactivity to circulating Kallikreins" causing the PSA to read higher....never heard of it?? don't worry no one else has either!  Funny... it has been rising ever since.

I have stress and urge incontinence and I am definitely not going back for more.

I would dearly like to have something positive to say about my surgeon but I cannot and if he was trying to get a trifecta (cancer control, continence and potency) then he hasn't won a place.

As above in Chucks reply, it isn't possible to hold the rogues accountable..

 

all the best

Darryl

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Thanks for the indepth replies Darryl

A childhood friend that lives and works in Newcastle spoke to me in 2012 about 2 work colleagues in a corporate office environment about there operations

Details of what type of treatment / operation they received was sketchy but both had issues

Again as you note specialists have there own set of rules and should actually follow recommend guidelines

I will speak about my surgeon again

A work colleague was diagnosed and asked me about my experience as he just wanted piece of mind

I recomended to see my surgeon for a second opinion ( always a good choice if available )

He came back to me after his appointment and said the 2 were chalk and cheese and my bloke was very precise & thorough in detail and almost put him off, but his gut feeling trusted him more and chose him to do his robotic surgery

Again perfect result - in fact because his PSA was lower and prostate less enlarged he had an better result with blader control than me

Wishing you did not have to suffer like you have for the last 6 years mate

Paul

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