Martin
Durden and Gloria live in Exeter, UK. He was 63 when he was diagnosed on March
5, 2008. His initial PSA was 459.0 ng/ml, his Gleason Score was 5+4=9 and he was
staged T3, N1, M1. His choice of treatment was ADT (Androgen Deprivation Therapy).
Here is his story.
Late Sept 2007. My wife and I were out on one of our
usual longish walks, an activity we enjoy. After about an hour my left leg between
the knee and hip became quite sore, after quite an intense pain it settled down
as we walked on. I put it down to age. But it happened every time we walked from
then on.
Beginning October 2007. Visited GP about pain in left leg. He
said it was probably arthritic hip and prescribed pain killers, Ibbroprufen and
anti inflammatories Dyclefenac. During the next week the pain moved across the
pelvis and into the right leg, I could feel it move across. It increased to such
an extent I went to the doctor again the next week and told him it had moved.
He said it might be back trouble and prescribed stronger painkillers Cocodamol.
During the next week, walking became difficult, after about 10 minutes walking
the pain was excruciating. Went back to the doctor and insisted he refer me to
a hip specialist. He referred me to a specialist hip Physio who would assess me
and decide if referral to the hip specialist was warranted.
November 2007.
The Physio ordered an x-ray which showed no abnormal degeneration of the hip and
so she would not refer me to the hip specialist. In her view the hip joint was
not sufficiently degenerated to warrant surgery and would not improve the situation.
When I questioned the Physio and GP about the level of pain not being commensurate
with what the x-ray showed, both answered they couldn't explain it, but it sometimes
happened! The physio put me on an exercise programme which was difficult to accomplish
because of the pain, and I visited the GP weekly and the Physio fortnightly. I
had continuous discussion with each separately about whether the source of the
pain was back or hip, but there was no direct communication between GP and Physio
until I told them to discuss the problem and then they couldn't agree. At the
end of November I fell over hard on my right hip. It caused severe deep bruising
and, according to the physio, became the source of most of my pain, masking the
original pain.
December 2007. During the first weekend of December the
pain became so unbearable I took myself to the A+E of the local hospital. They
gave me a good going over but all they could do was prescribe stronger painkillers,
Tramadol, an opiate which worked a charm but made me very drowsy. I struggled
on going to physio and taking the drugs but had to stay off work from 10th to
31st Dec 2007. Christmas was not good that year!
January 2008 Returned
to work but by 14th found it hard to work and was off work till 5th February 2008.
Continued visiting both physio and GP, both still believing the source of the
pain was either hip or back masked by the fall.
February 2008. back to
work on 5th but needed to be picked up and taken home by car as I couldn't walk
ant distance, even with a stick. Needed a week off work from 18th to 27th.
March
2008. Felt pretty helpless as GP and physio were accomplishing nothing. I decided
to see a Chiropractor, at which the physio announced she could no longer treat
me if I was seeing an alternative therapist! So I had treatment for a week which
seemed to give some relief, but because of the pain, I had to restrict some of
the bones the chiropractor wanted to crack! In desperation I got the GP to refer
me to a private back specialist who I saw on Monday the 10th. He ran tests but
could not conclude that the pain was the result of back or hip problems. So he
said we should eliminate some other sources via blood tests, 6 different tests.
I had the blood taken the next day, Tuesday, and saw my GP on the Thursday for
the results. He told me all the results were ok except that I was anaemic and
he wanted a further test done to find the cause of the anaemia. It was comforting
to know all seemed ok, but frustrating too that after all this time the source
of the pain was no t known.
On the evening of Monday 17th, just as I got
home from work, the GP knocked at the door, very strange I thought. We all sat
down and he said that one of the blood tests hadn't arrived when he had seen me
the previous Thursday, it had turned up on the Friday morning. He said he had
called round that Friday evening but we weren't at home. Now here he was and the
test showed that I had a PSA reading of 459 and with a reading that high it probably
meant I had PCa which had spread to the bones and was the source of the pain.
Looking back I should have exploded with anger, but strangely my overriding feeling
was utter relief that at last we knew what was causing the pain and we could treat
it. My wife, quite rightly, asked why he had not done a blood test for PSA, his
answer was that he didn't think I was old enough to consider PCa!!
He
went on to say he would make a fast track referral to the local hospital which
meant I must be seen within 14 days. The appointment from the hospital arrived
on the Wednesday and was for 13 days hence - right on the 14 day limit. I phoned
the GP and said that with no diagnosis for 5 months since first experiencing the
pain and with a reading of 459 , 13 days was too long to wait, I wanted to be
seen immediately and would he get on the phone and pull a few strings - he said
he could do nothing, I would have to wait. So I wrote a letter setting out the
events of the last 5 months and asking to be seen immediately and took it round
to the Urology clinic at the hospital. The consultants were not there, but the
nurse in charge took me along to A+E where the consultant realized the gravity
of the situation and booked me in for an MRI scan the next day and undertook to
talk to the urologist to whom I had been referred. Next morning I had the scan
which showed spread to the pe lvis and spine. In the afternoon I saw the Urologist
The next day I started a course of Cypreterone Acetate prior to having Zoladex
injections.
January 2009. PSA has now stabilised around 17+ but still falling
slowly after some dramatic drops in the first few months of Zoladex, Pain has
gone, although there is discomfort in knee/hip joints if I sit too long. I can
walk good distances, swim and even run. We have just returned from a 5 week holiday
in Australia/NZ and I feel well. I am very cynical about GP's and Physio's but
very impressed with the my Urologist and Oncologist and their staff - an amazing
bunch of people. I have hot flushes from the Zoladex, which is annoying plus some
fatigue but it is all liveable with. I am endeavouring to reduce the PSA as low
as possible with a view to intermittent treatment and getting as much out of life
as possible. My wife Gloria has been an inspiration through all of this and we
have met some lovely people in the same boat. It's not what you would choose for
yourself but its far from all bad.
Martin's e-mail address is martin_durden@yahoo.co.uk
