I’m 44 years old (as of Nov 2007). I’m married with 2 young daughters and live in Watford, Hertfordshire , UK. I’ve spent most of my working life as an IT manager in the City of London. I’d say I’ve generally been pretty healthy. I have had periods in my life when I’ve been overweight but tend to control this now through diet and exercise.
Up until December 06 I used to be a light smoker (about 3 or 4 a day), I had periods of being alcohol free but did drink from time to time. Both these things have changed now since I was diagnosed, (although I allow myself the odd glass of red wine now since my Oncologist told me alcohol has little impact on a functioning Kidney).
I try and cycle into work twice a week during the summer (21 miles each way) and run when I can.
I love music and have been in various pub type bands over the last 10 years, I play violin, guitar, bass and keyboards and do some recording when I get time.
Stupid thing’s I’ve done – climbed Kilimanjaro – twice!! … and stood naked on the top both times.
Kidney Cancer Story
My story started back in May 06 when I had a bout of hermatospermia. Scared senseless I went straight to my GP where I was told not to worry. I had no blood in my urine, however he did have the presence of mind to send me for a blood test and to an Urologist as a precaution. The GP did check my Prostate gland and couldn’t see any problems but felt it was still best to refer me.
The Urologist said “not to worry” however your PSA level is a little high for someone your age so we’ll send you off for an Ultrasound and Cystoscopy just in case, and in 3 months time we’ll do another blood test to see if your PSA levels have dropped.
The Cystoscopy turned out to be negative, however the Ultrasound showed a Complex Cyst on my right Kidney. They couldn’t tell if it was Cancer or not so sent me off for a CT Scan. Again this only showed a Complex Cyst and they couldn’t say if it was Benign. After reading up on the Internet I discovered my Complex Cyst was a Bosniak III rated cyst. This meant that there was every chance that even if it wasn’t cancer it could turn into cancer.
It was at this stage that the Urologist made the decision and booked me in for a Nephrectomy
None – My Tumour was found incidentally because of the hermatospermia. I had been getting very tired up to that point but i put that down to my work. I do stupid hours from 7 in the morning to 7 or 8 at night.
The conclusion was to take the Kidney out and perform a Radical Nephrectomy. I had to wait about a month before the operation and that was the toughest time I think I’ve ever had in my life. The anticipation was far worse than the reality. I was out of hospital within 5 days, walking and feeling very little pain…. given they pretty much cut you in half and stitch you back together again…. I was impressed.
I’ll try and describe my experience so others can learn and hopefully take some comfort in knowing that unpleasant as it is you will come through it feeling better than you thought possible.
What I did in the month or so before
I got as fit as I possibly could, I ran a lot, I cycled a lot, I only ate the healthiest of things. I cut out caffeine, I’d already packed in smoking months before and I didn’t drink, I made sure I got a good amount of sleep each night. Basically I became a health freak. I have no idea if this helped, but I believe it did, I certainly felt better going into it, my mental state was good and I have to believe that the fitter you are the quicker you recover….. however I’m not a medical professional so it’s only my 2cs.
I arrived in BUPA Hospital Bushey at 7am in the morning on the 23rd March 07 and hung around for about 1/2hr in my HDU room waiting for my Surgeon to turn up. Had there been a carpet in the room I’d have worn it out (much to the frustration of my wife). When she did arrive I was a bag of nerves. I’d spent the past month assuming I was just having a kidney out, straightforward enough I thought, happens every day…. heck people even donate them, so no big deal. So I thought ….. it was only then that she told me I’d have a scar across the whole length of my stomach and she’d be taking out more than just the Kidney… she wanted the local Lymph Nodes, an Adrenal Gland and the fatty tissue that the Kidney sits in. Well, it was at this point that I asked for drugs …. as many as possible …. anything that would knock me out and make me feel so out of it that I wouldn’t care. No such luck, I had to wait for the Anesthetist to turn up, take my blood pressure, ask a few questions. I was then given a couple of “magic” pills and I was flat out asleep until I was woken up by a nurse who popped me in my dressing gown and took my up to theatre.
What happened next was all done with military precision, so fast I hardly noticed (that and I was so doped up that I didn’t care). He stuck a needle in my hand for the anesthetic, and then stuck a couple of needles in my back for the Epidural. Whichever God you worship should bless the person who invented the Epidural…. zero pain after the operation. Then he stuck a needle in me and that was it ….. zzzzzz.
I woke up about 3 1/2 hours later and was able to say thanks to my Surgeon and was then wheeled back down to my HDU. Most of this is clearly hazy because of the anesthetic. I can remember the relief on my wife’s face and I can remember wanting lots of water and having a bit of a sore throat because of the tubes the Anesthetist stuck down there. They gave what I can only describe as thimble fulls of water at regular intervals in case I was sick. When they fiddle with your stomach it takes a day or 2 to kick back into action, it doesn’t like being played with. Water was Gold to me for the first day, I certainly remember that.
By Mid afternoon I was able to sit up. It was at this point I realised what they’d done… I confess that stung a bit when the nurses helped me move up the bed. But it wasn’t agony, just a shock and I was nervous about moving.
I remember my parents and the kids turning up, but if I’m honest I spent most of it zonked out. My Surgeon went off for a well deserved horse ride after the operation and then came back late afternoon just to check I was ok.
The rest of the day is a blur. I got injections every now and then to stop my blood clotting, antibiotics and pain killers (although because of the Epidural I really had none. I had a Catheter in to drain the urine from my bladder. and Fluids bags that kept me hydrated (these entered my body through a needle in my arm). I was also hooked up to a blood pressure monitor, I had an Oxygen tube in my nose and I had an ECG attached to monitor my heart. So they pretty much had something stuck in every available part of my body … except my ears …. I plugged those into music.
I was encouraged to do deep breathing exercises every 20 minutes to keep my Diaphragm from collapsing, I was also told to raise my legs every now and then to keep the blood flowing down there. I did both of these religiously and I’m sure this helped me recover quicker.
Then it was sleep.
This was a rough day, but positive. The Physio turned up to get me out of bed and into a chair. All of which I managed to do un-aided. So I sat in a chair for a couple of mins then got back into bed. A Result.
Later in the afternoon I got out of bed again so I was ready to see the family. I was fine, I had all my tubes stuck in me and when they all turned up. I was ok for a while and then I felt myself go. I know when I’m going to faint so I told my wife that she should call the nurses. At this point I just fainted and woke up with 3 nurses who’d turned me upside down I guess to get the blood running back up to my head.
Anyway don’t be surprised if the same thing happens to you the Epidural can have that impact (so I’m told)… but it sure scared the heck out of my family.
All I got to eat that day was a small piece of toast.
That was clearly enough excitement for one day.
Enough of the toast I moved onto other things and all was back to normal. Can’t remember much about that day to be honest. I was still wired up and was quite grateful for the Catheter so when my Surgeon said it could come out I asked if I could keep it in for another day. Sheer laziness I know.
My Surgeon turned up and said I could go home the next day if I wanted, after all I could now get about myself and walk up a flight of stairs. Sadly my wife wanted me to stay on another couple of days so she’d be able to look after me after the kids had broken up from school …. so stay I must. So I count it as a 5 day stay rather than a 6 day one.
So that was it really, day 3 came and went and I was pretty much fully mobile… couldn’t walk very fast but I felt fine.
All the gadgets they had hooked up to me were now out and I felt human again. From then onwards the staff concentrated (quite rightly) on other patients. I was also due to move out of my HDU the next day.
I moved rooms but now I was going stir crazy, there really is only so much day time tv a person can take. So I escaped from the ward and my wife took me to a local friends house for a cup of tea, Nice sunny day and great to be out.
It’s amazing how the human mind works, but when I got back into the ward everything was getting on top of me, silly little things like having to wear those horrible sock things…. just basically missing home.
I wont go onto talk about the next day because nothing happened, I woke up, had a shower and was taken home by my wife.
The relief was enormous. Now it was just a case of waiting a week or so to have the clips removed from the wound.
When I look back it all seems a blur so this was the best I could do. The thing to take from this was that it wasn’t a nightmare experience. If you’re going in for a Laparascopic Nephrectomy then it should be easier than my experience having had an Open Radical Nephrectomy.
Complex Cyst Right Kidney
Kidney 135 * 95 * 50mm Ureter. 5omm Ureter. Part of Adrenal 20 * 10 * 5mm. Multilocular translucent walled Cyst lower Pole 80 * 60 * 50mm, with Foci of granular yellow material in wall.
Secition show a Cystic Clear Cell Carcinoma of the Kidney, Fuhrman Grade 1. No Lymphovascular Invasion is seen and in particular the Renal Vein and Renal Artery are Tumour free. The Renal Capsule is intact and the Renal Pelvis is not involved. The Adrenal Gland is Tumour free.
Renal Cell Carcinoma Dated 30 Mar 2007
The letter I recieved:
“Thank you for referring Mr Thomas whose history is outlined above. He has made an excellent post operative recovery and I note his preoperative Staging CT Scans were normal.
I explained he falls into the good Prognosis group according to the Mayo’s score which is greater than 90% chance of being cured by you. He understands there are no proven Adjuvant treatments and he is ineligible for any experimental studies given his low risk.
He understands that he will see you occasionally for follow up. In terms of life style changes, it obviously makes sense for Mr Thomas to stop smoking, but I have advised against any other significant dietary or Complimentary change. He understands that in the unlikely event that there should be a problem in the future, you would ask me to see him again.”
I saw my surgeon again after 6 weeks just to check on the state of the scar and my general health. I’m due for my next follow up in about April 08 for a Blood Test, Chest X-Ray and Ultrasound on my remaining Kidney
Watford Gerneral Hospital – For initial diagnosis
BUPA Hospital in Bushey – For my Radical Nephrectomy
Mount Vernon Hospital Ruislip – To see an Oncologist
Mrs M Ruston
Dr Paul Nathan
This post was written by AndyThomas on January 26, 2010