Anthony
Baker and Roz live in Western Australia. He was 57 when he was diagnosed in 1996.
His initial PSA was 16.0 ng/ml, his Gleason Score was 8 ; he does not give his
staging . His choice of treatment was Surgery. Here is his story.
I had
a radical prostatectomy in 1997 at age 57 following diagnosis of aggressive cancer
(Gleason 8). As the cancer was outside the capsule I have had ongoing ADT (Androgen
Deprivation Therapy) since.
During the past 5 years, my PSA has ranged
from 0 to 7.0 and has been controlled by a single 3 month Zoladex implant which
has had the effect of reducing my PSA to almost 0 at 6 months followed by creeping
up to about 7.0 at the 12 month mark when a further implant has been administered.
I have a new Urologist who says that this procedure is unusual, but if it works,
why change it?
My only real problem now is that I am experiencing severe
discomfort from recurring burning sensations all over my body including arms,
legs, back, crotch etc. I have recently had both knees replaced, (6 weeks ago)
and although I have recovered well from the surgery, my knees feel as though they
are on fire.
My doctor feels that I might have some kind of nerve (neuropathy)
problem which could result from long term ADT. He is treating my with Lyrica
to control the discomfort, but I would really like to get to the bottom of the
problem.
Has anyone out there experienced anything similar?
Anthony
BRIEF
MEDICAL HISTORY:
In 1997 (aged 57) I was diagnosed with aggressive
Prostate Cancer following routine PSA test. I had a Radical prostatectomy in June
1997. The cancer was outside the capsule and my PSA continued to rise so I was
placed on an ADT regime for many years. Latterly for the past 5 years, one X 3
month Zoladex implant per annum lowers my PSA to near zero after 6 months and
it then gets back to around 7 in another 6 months when the implant is repeated.
Main side effects noticed have been weight gain, loss of muscle strength and reduction
of energy. I received my last Zoladex implant 7 months ago.
A very recent
test showed that my PSA level has gone down to 1.7 as it usually does at this
stage of the cycle. This was a relief in view of the new nerve condition which
has developed which is mentioned below. Looking back, I had 11 years of a relatively
healthy life after my operation, except for the continual tests and side effects
of ADT which I compensated for, with various vitamin supplements and by keeping
involved and active in business and with my social life. (My wife has written
a prostate cancer "enlightening"
paper on the many different things we have tried and still follow, in order
to keep on top of my medical predicament.)
July 2008 I had a total right
knee replacement following an Arthroscopy in May 2008. I had continuing recovery
problems including knee pain and numbness in foot.
December 2008 Arthroscopy
to left knee and lateral release to Patella.
September 2009 I had a revision
of right knee with Patella resurfacing and at the same time, a total replacement
of the left knee including Patella resurfacing. In both operations I had epidural
anaesthesia and after the last operation I had a problem firstly when the epidural
had to be pulled out and adjusted, as it was only working on the one leg. I then
received too much anaesthetic and when my blood pressure dropped right down, and
I had no feeling in my upper chest, I had to be given an antidote.
I recovered
quickly from these operations but the same pains in my right knee continued, and
started in the left knee and the numbness in feet.
CURRENT PROBLEMS.
For
the past 18 months I have experienced a slowly developing syndrome whereby I have
recurring burning skin sensations similar to bad sunburn accompanied by ' hot
flushes' to the face and head. My sinus area becomes blocked causing sniffing,
my eyes burn and also crutch and buttock area. Most affected areas are my knees
which have an acute burning sensation and increasing pain accompanied by a feeling
that steel bands are being tightened around my knees. When the burning is worst,
my lower legs down to my toes feel numb. Walking becomes very difficult. When
my knees start to give pain, a burning attack usually follows which can last for
hours.
I am fairly positive and tests have confirmed, that these feelings
are not associated with the operative side of my knee replacements but are rather
a nerve reaction that causes the discomfort. As partly mentioned above I also
experience the burning in my arms and hands, back, lips, eyes, lower torso, buttocks
and genitals. Although the burning has been intermittent until recently, it is
now virtually permanent and more severe.
A year ago I visited Perth Neurologist
Dr. L who carried out Nerve conductivity tests and has confirmed that I do not
have Peripheral Neuropathy. She does however suggest ABNORMAL CENTRAL PAIN SENSITIZATION
as a possible cause of my problem. She prescribed a course of Cymbalta, but after
the first week, the symptoms were worse and were accompanied by other symptoms
such as nausea, little appetite, frequent urination, headache and insomnia. Dr
L advised me to cease taking Cymbalta. This was replaced with a trial course of
Lyrica for 3 months, but that seemed to have little effect and I stopped taking
it. The symptoms became worse when I stopped taking the Lyrica and I am considering
taking it again.
Synonymous with the attacks of burning sensations I almost
invariably experience discomfort in my sinuses, particularly to the left of my
face. I experience heavy concentration of mucus on the back of my throat, particularly
after sleep and my throat feels constricted.
My overall quality of life
is deteriorating rapidly, and I now feel continuously unwell with constant severe
discomfort, very little sleep and decreasing appetite. Two years ago I was a fit,
active 68 year old and perhaps coincidentally all this began with the decision
to have my knees replaced. If I had my time over again I would have happily suffered
the knee pain until I could walk no longer rather than put up with what I am going
through now. There are schools of thought that suggest that after years of ADT
perhaps bone strength and density are such that it may not have been wise to undergo
knee replacement. However surgeons are in business to operate to cure pain and
perhaps there is not enough evidence for long term ADT treatment to be taken into
account.
I have spent many hours on the Internet researching everything
from anaesthetics to food or vitamin allergies as a cause but with no result.
A few people have concurred with my feeling that possibly the epidurals might
be the root cause of my problem. There seems to be little knowledge about nervous
system diseases and the problem I have leaves my own doctor and various Professors
and specialists baffled, and only able to experiment with various drugs, hoping
that something will make a difference.
In recent times I have tried various
alternative treatments, mostly with no improvement. I have tried electronic acupuncture
with a Chinese doctor and hypnotism to no avail.
The pattern of my problem
has changed regularly and often becomes worse with a new treatment. I have then
been afraid to continue and have moved on. This has even happened with trials
of different types of medications including Dothep recommended by yet another
Neurologist Dr K . Following a further visit to him he conducted further nerve
conductivity tests and has put me on a course of 20 mg Lovan (Fluoxetine Hydrochloride)
4 weeks later this has made no difference. After this he told me that he cannot
help which was very disappointing.
It has been suggested by the regular
medical community that I am suffering from some form of 'Abnormal central pain
sensitization'. As far as I can understand, this is a malfunction of the central
nervous system that attacks vulnerable sites in the body where there might have
been recent trauma. It can also affect other parts of the body with pain and burning.
I have noticed that my arthritic elbows and wrists become far more painful when
I have an attack. Painkillers have little or no effect.
Recent CT & MRI
to my lumbar spine show significant deterioration at L2/3 and L4/5 levels. I experience
pain in my lower back and sitting or standing seems to exacerbate the pain in
my knees Next month a new specialist anaesthetist will inject my lumbar spine
with a combination of drugs to attempt to block the pain and hopefully assist
the neurological problem.
I have a feeling that possibly my whole problem
might have been caused by epidurals administered during the various procedures
I have experienced, as the very first signs started after my second knee arthroscopy
in December 2008.
I am now getting desperate to the point of fear of the
future and am looking for some help beyond what I have experienced until now.
Anthony's
e-mail address is: rozb@bigpond.net.au
