Richard B and Terry live in West
Sussex, United Kingdom. Richard was 53 when diagnosed on 27 September 2004 His
initial PSA was 4.9 ng/ml and his Gleason Score was 3+3=6. He was staged
as T2a. His treatment choice was Laparoscopic Radical Prostatectomy. Here is his
story:
Firstly I apologise for the length of this text but I wanted
to put down as much detail as possible.
I had been visiting a urologist
for 10 years for strictures in the urethra for which I have been self dilatating
with a catheter for about 5 years - this has improved the urine flow considerably.
I have also had several infections of the prostate and thus during those years
have had many PSA tests.
However it was a routine Health Check medical that picked up the increase in PSA
from 2.6 ng/ml in June 2003 to 4.3 ng/ml in June 2004. My doctor referred me back
to the urologist thinking that it would be another infection but the urologist
felt a bump during the DRE and sent me for an 11 needle biopsy. This confirmed
PCa in 3 of 6 samples from the left and 1 from 5 on the right. Gleason was 3+3
and stage was stated as T2a. I had an MRI scan two days later which was clear.
I did not feel that watchful waiting was for me and I did speak to a proponent
of 'Active
Surveillance'from the Royal Marsden Hospital in the UK (the UK's top cancer
hospital) about this, and he also considered it was not for me. You have to have
a certain mental approach to cope with this and I do not believe I have it. After
the usual research I initially decided to have a standard RRP but after exchanging
e-mails with Mr Chris Eden who has a web site on LRP in the UK, I elected to go
for the LRP. My decision was influenced by the fact that the surgeon has performed
more LRPs in the UK than anyone else since 2001, nearly 150 of which were in 2004.
The operation was performed on November 17th and I returned home on the 20th
November 2004.
When I awoke I did have some pain to the left side of my abdomen but this was
swiftly dealt with using morphine and I felt comfortable for the rest of the night
although I only dozed intermittently. The next day I was encouraged to get out
of bed to clean my teeth and have a shave which was OK but I moved gently! From
this time onwards I only used paracetamol for pain relief which was fine. I stopped
taking those from day 5 and used no pain killers thereafter.
I ate some
soup about 18 hours after the op and scrambled egg about 24 hours after the op
with no problems.
As I have Ulcerative Colitis and have been on steroids
for 18 years (I am steroid dependent now) my healing is slower than normal and
this is one reason I opted for the LRP. The drain stayed in for 2 days and was
uncomfortable on removal but not painful.
I did have a problem with
constipation despite taking senna and eventually Fybogel but this was all comolicated
by my UC. I finally managed to have a rather painful bowel movement on the 4th
night which was a great relieve.
I kept the catheter in for 14 days due
to my slow healing but had no great problems with this other than on one occassion
during a walk I started having a pain in the bladder. The bag had slipped and
a crease formed blocking the tube, which was creating pressure in the bladder.
I managed to get back home by which time urine was leaking from around the tube
at the end of my penis but as soon as I realised what had happened and removed
the crease, the pressure immediately dropped, flow resumed into the bag and the
pain was gone!
The removal of the catheter was again uncomfortable rather
than painful and I did not leak at all initially when seated or laying down. I
passed 250 ml the first time I went to the toilet which was apparently quite good.
I had an ultrasound scan to ensure almost complete evacuation of the bladder and
then went home the next day - I stayed over night again due to my slow healing
and distance from home. The surgeon wanted to be sure all was well.
I
progressed OK but had some leakage on a couple of nights and also whenever I moved
suddenly, coughed or walked briskly. This has got better and now I do not wear
a pad at all, day or night unless I have been out for a few beers. (I did have
an accident after a few beers when walking home with my son recently and had to
dive down an alley to discreetly relieve myself but had soggy trousers for the
rest of the way home - this was completely my own stupidity and over confidence).
Four weeks after the op I returned for the Histology report on my removed
prostate. There was good and not so good news. The Gleason was upgraded to 3+4
(from 3+3) and the staging was T2c (from T2a) as the tumours were in both sides
of the prostate. There were multiple focii and the total amount of tumour was
about 10% of the prostate. The largest tumour measured 15mm across. The good news
was that there 'appeared' (pathologists word) to be negative margins around the
specimen and no seminal vesicle involvement. My surgeon did not remove the Lymph
Nodes which now that my Gleason grade has been increased I wished he had. He performed
nerve sparing on both nerve bundles.
I have not been able to resume normal
intercourse yet (9 weeks after the op) but I do have all the sensations and can
have an orgasm fairly easily so I am hopeful of some progress over time although
this is very frustrating and can be depressing as many sufferers have stated.
I have tried Cialis 20 mg but nothing useable has resulted yet.
I went
for my first run on 1st January, 6 weeks after the op. Unfortunately 4 runs later
I hurt my back and have had to stop the running for the time being. I take a walk
most days at a brisk pace.
I am now waiting for my first post op PSA
test the results of which will be Feb 11th. Overall I am happy I made the decision
to go for the LRP as I am quite sure it is less traumatic than the Open RP. Time
will tell whether it is as effective but even my first surgeon who only practices
the ORP said that he was sure that the LRP would be the 'Gold Standard' eventually.
I will keep you posted of my progress.
Met
with my consultant on Friday 11th February 2005. First Post Op Ultra Sensitive
PSA result was 0.016 ng/ml. Surgeon happy with this. Stated that he considers
threshold for teatment after a rising trend as 0.20 ng/ml.
Well
after trying Cialis tablets a few times without success, I have now tried MUSE
this morning and it worked. I administered the Urethral Suppository with an applicator
and the effects took about 15 minutes. It burns a bit at first but that was OK.
I also had quite a severe ache in the Perineal area and this lasted for several
hours. However it has been 16 weeks since the operation and it is the first time
we have managed to have sex in a fairly normal way.
The
equipment was about 70% of its old self but we managed. In fact I was surprised
at how normal it felt. I must say I am a little apprehensive about trying it again
as the ache was not nice. But I expect I will. Next time may be at night rather
than in the morning so that I can stay laying down and hopefully asleep when the
ache is at its worst.
First
Post Op PSA was Feb 11th 2005 and 0.016. Second Post Op PSA was May 6th 2005 and
was 0.003. Surgeon happy with both.
I
am now virtually 100% continent but have a very occassional leak when exercising
or stressing / lifting heavy objects, but this is very tiny. I am still technically
impotent, but have tried Cialis with no success, MUSE with some success and lately
a Vacuum Device which works well but is a little fiddly to remove the rings. I
have also noticed some stirrings for the day or two following a Cialis tablet
but no full erections yet.
General
health pretty good but I have been experiencing hip, knee and back discomfort
recently - my GP does not think it related to the PCa, particularly as my PSA
results are so low. However it is stopping me running and I am now about to consult
an Orthopedic Surgeon on this problem.
9
month post op PSA was 0.004. This is slightly up from the last reading of 0.003
but as my consultant says, this is in the noise level at these low readings, so
I am not overly concerned. I am currently experiencing night sweats which is strange
but my GP thinks it may be a urine infection. We do not think it is related to
PC.
Otherwise
I am in good health and planning to run the Great North Run in the UK next month,
which is a half marathon. I will be raising money for the Prostate Cance Charity
in the UK with my wife and my eldest son.
November
11th 2005 - my fourth post op PSA was 0.003 ng/ml. My surgeon is very happy with
that and so am I. It is a year since my operation and my next check will now be
in 6 months.
Continence
is 100% most of the time but I still occasionally have an involuntary leak. But
its not a problem. No spontaneous erections athough two recent occasions when
there were definite signs in the morning. I have had some liver functions tests
come back with high AST results and I am slightly under the weather but ultrasound
scans appear to indicate no obvious concerns except for a large cyst on the Liver
which the consultant considers to be harmless although he is reserving final judgement
until the results of some more detailed blood test have been received.
As
I have Ulcerative Colitis and have been on steroids and other drugs for 19 years,
it is possible that they are affecting me or another Auto Immune disease has developed,
such as Auto Immune Hepatitis or Diabetes. I will keep you informed.
However
from a Prostate Cancer viewpoint, I am happy with the ways things have gone so
far.
18
months post LRP and my latest PSA check was 0.003, so undetectable which was very
good news. My Liver problems seem to be resolving themselves as my AST has now
returned to almost normal levels although it has taken the best part of a year.
The doctors still do not know what caused it but suspect some kind of virus.
I
had a flare up of my Ulcerative Colitis and had to have a colonoscopy earlier
than my normal routine check up but by then the additional steroid dosage had
taken effect and the biopcies showed nothing untoward. I am now reducing the steroids
down to a maintenance dose slowly. I still leak sometimes when exercising or move
suddenly and also sometimes when I climax during sex but generally no problem.
I have had several spontaneous erections which last only for a minute or two but
it is encouraging. Normally I use a Vacuum Erection device and Cialis which works
but is not spontaneous so takes the edge off a little. I also have a burning sensation
in the urethra when I climax which is apparently possibly due to some nerve endings
being disturbed during the surgery, but I can live with that.
So
far so good then - however I suffered a prolapsed disc three weeks ago when being
over enthusiastic in the garden!
My
best wishes to you all.
My
latest PSA is <0.10 ng/ml. I have moved house from Sussex to Devon and my PSA
blood samples are now assayed at Exeter Hospital. Exeter do not do the Ultra Sensitive
test which means I cannot compare the latest reading with my past very low readings
of 0.003. I may pursue this but will speak to my consultant on the 17th November.
I do not want to become paranoid about a slight change to the very low readings
which can happen often, so I may accept 0.1 as the norm and be happy when it is
below this figure.
I
am 99.9% continent, only tiny leaks occassionally under extreme exertion.
My
potency varies. I have had some spontaneous erections, usually in the very early
hours. They occur more frequently after recent use of the pump, for the next few
days and also when I have been taking Cialis. However when I have not used either
of these for a week or so spontaneous erections stop. On the 17th November it
is two years since my LAP RP, but I feel as if the respective nervous system is
making a very slow recovery. One can only hope.
Next
check in 6 months.
Latest
PSA Test resulted in <0.1 which is good of course. I would still like to have
the Hyper Sensitive test but my local hospital does not do them.
I
have unfortunately developed Peyronies Disease, a bending of the Penis. In my
case it is upwards at about 40 degrees from a position about two thirds along
the shaft. It also has the effect of shortening the penis. I can still participate
in intercourse but it is obviously different now. I have recently been having
spontaneous erections 2 1/2 years after my RP which was encouraging. However the
Peyronies has suppressed my enthusiasm somewhat.
It
could resolve spontaneously apparently but there will probably be a permanent
loss in length and girth.
So
another hurdle to climb but life goes on.
It
seems that many of us have several complications after diagnosis but it could
of course be down to advancing age. I am 56, hardly elderly just yet so I'll continue
to run, play golf and keep active which I believe helps combat all illnesses.
All
the best to you all.
PSA
still <0.1 and coming up to 4 years since LRP.
Still
problems with Erectile disfunction although have found that Viagra works on occasions.
ED pump works but I am not keen on it. Have developed Peyronie's disease which
is very annoying as it complicates the ED problem especially when using the pump.
It is possible that it will resolve itself apparently 30% of cases do but it takes
up to 18 months. I have had it for about 6 months. Maybe some improvement by my
next PSA check in Feb 2008.
General
health OK but with a few issues not related to PCa.
PSA
still <0.1 which of course is good. However I have an appintment with the Oncologist
next week to hopefully discount some hotspots that showed up on a bone scan, as
broken and cracked ribs due to a fall off a ladder in November last year. Apparently
hot spots can also indicate bone being renewed not just metastatic spread. Next
check is due for 1 years time if oncologist is happy next week.
Peyronies
disease is still a problem and does not appear to be resolving itself. Still life
could be a lot worse.
Richard.
Richard's
e-mail address is : rbaindiy@aol.com
