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.pdf wherever 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.
The complications and side effects are:
- Damaged urethra from poor catheterisation technique - resolved
- Torn right hip ligaments - resolved
- Pudendal nerve damage - resolved
- Urinary tract, bladder and kidney infection - resolved
- Incisional hernia - repaired
- Nerve entrapment from hernia repair - not resolved and permanent
- Diastasis recti - not resolved and permanent
- Right hand stomach wall muscle atrophy, possible effect from a very large hernia repair - not resolved, seems permanent
- Surgical clip migration next to the left uteric jet - removed
- Surgical clip migration in the trigone area - not resolved
- Surgical clip migration through the bowel wall - resolved (excreted)
- Urge and stress incontinence - permanent
- Erectile dysfunction - SHIM score 8/25
- Prostate cancer recurrence - not resolved and will be fatal
- Post Traumatic Stress Disorder - being treated
- Loss of libido - Permanent and surprised
- Penile shortening - Permanent
- Climacturia - Permanent and surprised
- Mild incontinence - Permanent and expected
- Stomach adhesions - Permanent and surprised
As you can see robotic surgery isn't any good when carried out by what I would call deceitful and incompetent surgeons. My Surgeon was deceptive with all aspects of his skills and the outcomes for the surgery. I constantly have physical reminders of my bad decision and if anyone reading my story benefits from it then I have done my bit for all PCa patients.
My journey update;
Surgery date; 1 September 2010, age 54
Metastatic cancer is somewhere and increasing in size. I have been told by my Urologist that there is no cure for me and radiation will likely give me bladder cancer as well and the only way forward is to treat where it troubles me or the PSA gets to about 25 or so.. not very comforting is it?
I have mentally adjusted to the race between old age/other disease or metastatic prostate cancer taking me out. The strange thing is when people ask how I am going I am able to tell them the algorithms tell me I have about 4 yrs left... their immediate response is that they could get hit by a car tomorrow! That's true and I tell them that the same applies to me but considering I don't get hit by a car then my expiry date is still 4 yrs... unless of course there is a miracle cure in the meantime.
I try not to be a fatalist but facts are facts.
The side effects/complications of robotic surgery linger and permanent pain from adhesions and dysfunctional stomach wall muscles from repair surgery for a huge hernia from the oversized naval incision (2.5 inches at the time of surgery now 8 inches long) continue to be a problem. The bladder area pain seems fairly constant and I am constantly aware that the remaining 21 large Hemolok surgical clips left inside are likely gnawing their way out..I haven't had a recent scan to determine the status of the clip in the trigone area of my bladder, I will check it out in due course, to my readers... the only way to find Hemolok clips is by Ultrasound as the polymer clips are invisible to all other imaging techniques.
My libido is just practically zero and has been since the robotic surgery, erections are weak and mostly non-existent and continence is the same as my last posting in Mar 2018. I miss my former self...
But I now act as a prostate cancer patient advocate, it disappoints me that the Australian Urologists tell blatant lies to the patients about the benefits with their type of treatments and omit critical information about the complications and side effects. I am continually surprised with what the patients are told. My role is to make them aware of the cure rates and complications/side effects of their chosen treatment. I never encourage any type of treatment, the decision is always the patients choice. The patients that end up having robotic surgery seem to be the most disappointed in the outcome and I have heard two young Urologists say at public meetings that 100% of their patients have erections after surgery!! The worst part is how the patients are discarded after the Urologists take their money and give their treatment. In our public hospital system in Queensland Australia, penile rehabilitation for surgery patients consists of the prostate cancer nurse telling the patient to go to a sex shop!!
By doing the Advocate role, my PTSD caused by my experience is somewhat under control... sounds strange but it is true, I believe I can help men and their wives adjust to the immediate and savage change to their lives.
I am not happy with my Surgeon or chosen treatment and wish I had been told the truth about it. I was his 186th patient and I now know he was no where near experienced or competent enough to do the procedure. I was left in the wilderness with many complications to sort out with my GP. I am sure my GP was equally disappointed with the surgeon and I could sense he was holding back with comments.
It seems to me that too many Urologists dabble in robotic surgery. After all it's trendy and they get paid more... I continually regret my choice!
I have for the last 18 months been taking large doses of Vit C and Vit D. Until that point my PSA increased every 4 months and was .27. It was a concern but I was afraid of any standard medical treatments. I also changed my diet to a more vegetarian based regime and cut out most sugars.
My latest test in Feb 20 showed my PSA had dropped to .17. My GP is amased and continually asks what I am taking. I am due for another screening later in June and hope the trend continues.
It may be a side effect of the vitamin regimen but my libido has vanished!!! To most sufferers of PCa treatments this can be blessing seeing we cannot perform and are continually frustrated? My GP says my testosterone is "just" in range but on the lower end of the scale.
The incisional hernia repair continually bothers me, not only is the surface of the skin over and around the repair numb but the internal parts twinge when my stomach area flexes. My GP thinks adhesions?
On 1 September 2020 it will be 10 miserable years since the worst decision of my life.
It's now 13 yrs 4 months since the worst decision of my life. Robotic surgery by a conman has cost me a lot. Not only side effects but lots of money.
Last update my libido had diminshed, now it's gone altogether, I guess repeated failures has conditioned my mind to not try. Not even viagra or any other types of stimulants work. I have tried injections but I have a phobia about needles!!
My PSA is increasing again ever so slowly, a recent consult with a Specialist resulted in the opinion that unless it doubles every 12 months he thinks I will probably die of something else before it becomes a concern.
In any case I will be a candidate for a new type of treatment called Photo Dynamic Light Therapy. It involves injecting a light reactive substance into the body and it attaches to the cancer cells, when it is exposed to photodynamic light it destroys the cancer cells! I understand it also activates the bodies immune system to attack cancer cells in the future. How good is that?
To all my readers I wish you all the best for now....
Darryl's e-mail address is: gippselec AT gmail.com (replace "AT" with "@")
