TURB:
Once admitted into the hospital later that day I was given directions to my Urology ward and I was allocated into a room with four other beds. It was not long before they called my name and said that it was time.
The procedure was done by local anaesthetic by inserting a needle in my back and after 15 minutes I had no feeling from the waist down. The procedure was very quick just 30 minutes and very similar to the cystoscopy only this time with tools to scrape the growth and burn the wound closed.
On the ceiling of the operating room hung a large reflective mirror and I could see all the theatre staff at work. This was really weird and although with body and soul present for the event, in a way in my mind I was watching from afar.
It became uncomfortable during the procedure and I requested extra pain medication. I was given an injection and my next memories were waking up in the recovery room.
Shortly after I was taken back to the ward, I had no pain and was happy it was over. I had a catheter in my penis and was told that my bladder was filled with a chemotherapy rinse to kill any cancer cells that may have been scattered around during surgery.
Nurses attending me were wearing protective clothing when checking the catheter bag. The full bags of bloody urine were placed into a special box next to my bed for chemical waste.
I could eat and drink anything although advised to drink as much as possible to flush out my system.
I had a great night sleep until I was awoken at 06:00 to have my catheter removed. This really did not hurt at all...the thought of having my first pee was what I was worried about.
Of course it was not long before I had to pee and yes it was painful just like rubbing salt or lemon into a wound but it was bearable. It was just a very intense burning sensation that slowly diminished after I finished urinating. Once my urine was clear of blood which was around late morning I was allowed to go home.
It took two weeks for all the pain during urination to completely go away and occasionally I would pee out a small blood clot or scab from the healing wound. This apparently is very normal and part and parcel of the healing process.
CT scan:
A CT scan was scheduled in late June 2007 which was a series of scans to cover the pelvic and abdominal area.
I had to drink x2 500ml bottles of contrast fluid before I came to the appointment. On arrival I had to drink one more bottle which nearly made me vomit. It just did not taste great...a kind of metal taste.
They inserted an intravenous drip and put a tube up my bum both of which were fed more of the contrast fluid for the different kind of CT scans they needed.
After the scan was completed which took roughly 30 minutes I had to visit the toilet to get rid of the fluid fed into my bum.
Scan and Pathology results:
Two days later I had an appointment with my Urologist for the results. I am so glad I was not alone. The CT scan and pathological reports confirmed invasive bladder cancer.
The solution offered for type of cancer was for a radical cystectomy with neo bladder.
Second Opinion:
After a few days of information searching on the internet I came across the blc web cafe which I found to be very helpful.
Just reading the experiences of others was enough to make me feel like I was no longer alone in my battle. I read a post on second opinions and decided this is what I should do also and took the steps needed to make that happen.
It took around two weeks to get an appointment with another Urologist in a larger medical centre. The diagnosis and treatment offered was exactly the same which I had expected. Of course I was hoping for a different outcome…it was a big mistake would have been great!!
It did however confirm it more psychologically that this was the best option in my situation for a chance at a longer life.
Wednesday, 9 July 2008
Initial Symptoms
My story started in the spring of 2007.
Symptoms:
The initial symptoms that I noticed was that my need to urinate increased and the flow of my urine became intermittent instead of the usual constant flow. The last few drops of my urine were also pink in colour.
Doctors Appointments:
I assumed I had a urinary infection and made an appointment at my doctor. The doctor was not concerned by the changes in urination I had mentioned. I gave a sample of my urine for testing and it came back negative for infection and blood.
The symptoms continued for another month and the blood in my urine was still present. I was jumping to all sorts of conclusions and it was playing on my mind so I made another appointment at my doctor.
This time the test was positive for infection and blood and my doctor prescribed a one month course of antibiotics. This did help to clear up my symptoms initially until the last week of my antibiotic course the problems of urination and blood returned.
I returned to my doctor and explained to him that the medication was not working. I was thinking of the worse case scenario in my head, that I may have cancer of the bladder. I was at a higher risk because of cancer deaths in my family although none of them by bladder cancer.
When I mentioned this he brushed my worries aside and said it was impossible I was too young to get bladder cancer. He recommended continuing with the medication as bladder infections sometimes need weeks of antibiotics.
The one month antibiotic course had finished and symptoms remained and I decided to press on the issue at my next doctor’s visit and demanded to see a specialist.
Urologist Appointment:
Two weeks later I was lying on bed in a Urology department having my prostate checked by the Urologist with an internal echo scan. He said that he saw nothing unusual on the prostate except that it was enlarged. He asked me to come back the following week for a cystoscopy to check my bladder.
Cystoscopy:
The thought of having a flexible tube inserted into my penis and pushed through into my bladder kind of freaked me out the whole week. The information they gave me to read and the info I found online did not help either. It was obviously going to be uncomfortable and I would have to grin and bare it.
It was not a pleasant experience; I was lead into the room and asked to take off my trousers and underwear. Then led into the next room with the cystoscopy equipment and asked to sit in a chair and put my legs into the side straps to hold my legs open. The nurse cleaned the head of my penis with something cold and watery and then inserted some lubricating jelly into my penis. A clip was then put on the end of my penis to stop the jelly coming out.
The Urologist then entered the room and started the procedure which went well up until the point that he reached my prostate and I then clenched down on the scope because of the very strange feeling and tried to grab his hands to pull it out.
He told me to take a few deep breaths place my bum back on the chair and with that distraction he pushed on through into my bladder. It literally took him 30 seconds and he said ok we are done and started to retract the scope...retraction was the easy part. He asked me to get dressed and meet him in his office.
Diagnosis:
He was very direct and honest and said I am sorry to tell you that you have a malignant cancer growth of about 2cm in your bladder and it looked like the shape of a tiny cauliflower.
At this point I just stepped into another dimension and my life has never been the same since. He recommended a TURB operation to remove the cancer growth. He could schedule me in a couple of weeks which freaked me out as I wanted the cancer out and now!!
I begged him to see me straight away and luckily for me he made a few calls and a bed was available. I was scheduled the same day later that afternoon once he had finished his patient list schedule that day.
This cancer growth had probably been growing inside me for a few years already. Waiting two weeks for the operation would not have been a problem. Although a nightmare for me as I would just worry that the cancer was spreading around my body even more.
I walked out of the hospital and walked to the car park and sat in my car and just gathered my thoughts for a while. I made a few phone calls to deliver the news to loved ones.
Needless to say the short drive home was in automatic mode as my mind wondered into deep dark places. I even arranged my funeral in my mind on the short drive home. Picking out music that could be played and wondering how family would get over from the UK to Holland for the funeral.
Symptoms:
The initial symptoms that I noticed was that my need to urinate increased and the flow of my urine became intermittent instead of the usual constant flow. The last few drops of my urine were also pink in colour.
Doctors Appointments:
I assumed I had a urinary infection and made an appointment at my doctor. The doctor was not concerned by the changes in urination I had mentioned. I gave a sample of my urine for testing and it came back negative for infection and blood.
The symptoms continued for another month and the blood in my urine was still present. I was jumping to all sorts of conclusions and it was playing on my mind so I made another appointment at my doctor.
This time the test was positive for infection and blood and my doctor prescribed a one month course of antibiotics. This did help to clear up my symptoms initially until the last week of my antibiotic course the problems of urination and blood returned.
I returned to my doctor and explained to him that the medication was not working. I was thinking of the worse case scenario in my head, that I may have cancer of the bladder. I was at a higher risk because of cancer deaths in my family although none of them by bladder cancer.
When I mentioned this he brushed my worries aside and said it was impossible I was too young to get bladder cancer. He recommended continuing with the medication as bladder infections sometimes need weeks of antibiotics.
The one month antibiotic course had finished and symptoms remained and I decided to press on the issue at my next doctor’s visit and demanded to see a specialist.
Urologist Appointment:
Two weeks later I was lying on bed in a Urology department having my prostate checked by the Urologist with an internal echo scan. He said that he saw nothing unusual on the prostate except that it was enlarged. He asked me to come back the following week for a cystoscopy to check my bladder.
Cystoscopy:
The thought of having a flexible tube inserted into my penis and pushed through into my bladder kind of freaked me out the whole week. The information they gave me to read and the info I found online did not help either. It was obviously going to be uncomfortable and I would have to grin and bare it.
It was not a pleasant experience; I was lead into the room and asked to take off my trousers and underwear. Then led into the next room with the cystoscopy equipment and asked to sit in a chair and put my legs into the side straps to hold my legs open. The nurse cleaned the head of my penis with something cold and watery and then inserted some lubricating jelly into my penis. A clip was then put on the end of my penis to stop the jelly coming out.
The Urologist then entered the room and started the procedure which went well up until the point that he reached my prostate and I then clenched down on the scope because of the very strange feeling and tried to grab his hands to pull it out.
He told me to take a few deep breaths place my bum back on the chair and with that distraction he pushed on through into my bladder. It literally took him 30 seconds and he said ok we are done and started to retract the scope...retraction was the easy part. He asked me to get dressed and meet him in his office.
Diagnosis:
He was very direct and honest and said I am sorry to tell you that you have a malignant cancer growth of about 2cm in your bladder and it looked like the shape of a tiny cauliflower.
At this point I just stepped into another dimension and my life has never been the same since. He recommended a TURB operation to remove the cancer growth. He could schedule me in a couple of weeks which freaked me out as I wanted the cancer out and now!!
I begged him to see me straight away and luckily for me he made a few calls and a bed was available. I was scheduled the same day later that afternoon once he had finished his patient list schedule that day.
This cancer growth had probably been growing inside me for a few years already. Waiting two weeks for the operation would not have been a problem. Although a nightmare for me as I would just worry that the cancer was spreading around my body even more.
I walked out of the hospital and walked to the car park and sat in my car and just gathered my thoughts for a while. I made a few phone calls to deliver the news to loved ones.
Needless to say the short drive home was in automatic mode as my mind wondered into deep dark places. I even arranged my funeral in my mind on the short drive home. Picking out music that could be played and wondering how family would get over from the UK to Holland for the funeral.
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