Date
of Posting: Jul 11 2002
Terry and Jean Marie Spence live in South Australia.
Terry's Age at Diagnosis = 62; Date of Initial Diagnosis = June 2002;
Initial PSA = 15.9 Initial Gleason = 7. Treatment decided = watchful waiting for
now.
(Story related by wife, Jean) Terry had a routine PSA reading taken 18 months
ago but doctor simply said it is a little high, check it in 6 months. Neither
Terry nor I took this very seriously and Terry did nothing about it until a recent
visit to the doctor for an eye injury. Doctor suggested further testing. Terry
expected everything to be OK, he has no symptoms which would indicate anything
wrong.
Doctor
called him back explained he was concerned the PSA was rather high and he would
like him to see a specialist for an ultrasound and possibly biopsy. We began to
think this might be serious but we had no real idea of what was involved. Terry
is an active member of Lions and we have had a friend die younger than us from
Prostate Cancer so felt screening sounded like a good idea. (As a woman I have
had all the recommended tests.) We thought if one catches it early then that is
good. That was before we discovered what was involved. I suppose I still think
it is a good idea.
We
live 7 hours drive from our capital city and had just returned from a weekend
at our daughter's 40th birthday, so we decided Terry would return overnight by
bus - see the specialist and return the following night, while I continued working.
We have two dogs who can't just be left with anyone.
This
was our biggest mistake. It became clear that things were not right. Terry dealt
with it very well and on the phone he gave me details clinically. (we both work
in a hospital environment so are used to doing this). But what threw him most
was that he needed a "carer" to go for the biopsy the next day (he felt he was
imposing on our daughter and would have done things differently if he had known).
This was only because he was given an antibiotic tablet which he may have had
a re-action to. Then the Urologist wanted him to remain at least another day in
case an infection set in. So it took about 4 days before he was able to return
home. This was our worst time so far. I had time to think that this is what life
was going to be like if he was no longer a part of it.
He
couldn't discuss his feelings as easily with our daughter, she didn't know how
to deal with the news or what to say, so she felt stressed. Once he returned home
it was easier to talk about it and try to start dealing with it. The Lions Web
site didn't seem too helpful at this stage although it was fine once I got used
to searching effectively. On the Tuesday he rang and got the results of his biopsy.
He
was told that because it was rather aggressive they wanted him to have further
tests and another appointment was made to return to the city for Bone Scans, and
a CT and another visit to the urologist while he explained all this.
The
next day when I went to work I discovered as I tried to explain this to my colleagues
I couldn't stop crying, I only lasted 1 hour before I had to return home. Terry
was still at work and quite surprised to find me home when he returned at lunch
time. The next day was my day off and I was no better so I went to see our doctor
and he managed to assure me that Terry wasn't likely to die in the immediate future
and that he probably had a life expectancy of several years ahead of him.
He couldn't say for sure but felt it likely the cancer was localised. I felt much
calmer and he gave me time off work, he was very helpful. I arranged for Terry
to go and talk to him the next day. He explained things to Terry in more detail
and sent him home with "Mr. PHIPS No 3". After this I managed to go
on the internet and search a bit at a time. While I was still in such a fragile
state I would only search for a short while, and sometimes I would have what I
called "cancer free" days when I didn't go on. Possibly because of the state I
was in when I saw the doctor he decided to have the various X-Rays brought forward.
We were unable to bring forward the time to see the Urologist though. Terry made
the decision he wasn't going to keep it secret, we thought by being open with
the problem it let our colleagues know what was going on and let them make allowances
for us and possible we would get more support this way. The first thing I learned
was that my friend who only lives across the road, told me her husband had had
radiotherapy for prostate cancer 2 years earlier. He is in his mid-70's, and because
of working at our hospital I am used to not asking questions about people's health,
so when she had told me they were going away for him to have treatment, I had
never asked what for.
I
found YANA's website and kept reading it as often as I felt up able and relayed
all my findings back to Terry. I felt cocooned in my safety zone during this 2
weeks off work and at home. This early stage has been the worst part of the experience
so far it has become much better since. We were told of a Motel which has been
purchased by the Anti-Cancer Foundation in Adelaide and we booked for one night
there.
We
left our 2 dogs on the way with the breeder for 2 nights. The idea of having the
Bone Scans etc didn't worry either of us. Terry actually found it interesting,
they had state of the art equipment and were very nice. The Motel proved to be
wonderful. Everyone there was either a patient or carer of someone with cancer.
The meals were wonderful and so healthy and everyone was cheerful. It is designed
for country people. So we felt there were resources out there for us. We treat
this like a mini-holiday. Next door was the Anti-Cancer Foundation and they provided
someone to speak with us who asked us questions, how we were feeling, did we need
to know anything etc.. They gave us a leaflet outlining a scheme to link you with
a support person if necessary. Terry contacted them again from home and he has
been given a support person who has had his prostate removed 2 years ago. This
man is impotent up to now but not incontinent. They also had a new book available
Free of charge, dated December 2001, called "Localised Prostate Cancer",
which outlines the situation very clearly.
We
went to our daughters for a night after picking up the dogs and we picked up the
films but preferred not to read them at this time. I felt they couldn't give us
any good news nothing was going to change the diagnosis they could only confirm
the status quo or offer more bad news. We decided to bring them home and take
them to our own doctor and hear what was on them in what I was beginning to feel
was my "comfort Zone". I hadn't at this time returned to work and was still feeling
pretty fragile.
Terry
was fine with it all. His attitude has always been "there is nothing you can do
to change this, lets get on with it, deal with it" There was no evidence that
the cancer wasn't localised in the prostate so as far as one could call it such,
this was good news.
I returned to work and gradually began to cope with it all. I did more work in
reading the various stories and learning more about what we were dealing with.
I'd pass on what I found to Terry. We talked about the various treatments and
what we could expect. You are left in no doubt that you should prepare for the
worst outcome and hope for the best. So we have discussed this and feel we can
deal with the problems as they arise. We have both valued the time to learn more
about this and not having to rush into life changing decisions.
At
the end of June we once again went back to Adelaide stayed two nights in the Motel,
left our dogs and visited 2 urologists for their opinions and to learn as much
as we could about what to expect. Both agreed that with a PSA of 15.9 which has
doubled in about 18 months or so and a Gleason reading of 7 that Terry has a more
aggressive cancer but one which seems to be localised in the prostate and should
respond to either a radical operation or radiotherapy. Of the 6 samples taken
in the biopsy only 1 had definable cancer tissue but this was grade 7. A minute
spot too small to define was detected in one of the others. I felt encouraged
by this.
Just
a few days prior I read an article written by Ron Gellately entitled "is your
prostate operation necessary". Until this point in time I hadn't doubted that
it probably was or even questioned it. I asked the urologist if we could try diet
etc and was it OK to wait a bit longer and he was quite happy to agree. We both
thought it would be good to get another PSA reading before rushing into anything.
He showed us a book he had written by Charles E. Myers. called "Eating Your way
to better health". I've managed to acquire it. So currently I have been assigned
the role of researcher and Terry is the chief cook.
Terry
Used a Plastic sleeved folder and stored all his information about his Prostate
cancer in it and details of all his visits etc. I've acquired another folder and
I have created a page "our plan of action". This includes details about foods
which are known to be specifically helpful in fighting prostate cancer. I'm also
keeping all the details I can find about some of the foods their vitamin content
etc from magazines I have been able to borrow from the library. I've added to
this the story of Terry and Anthea from the YANA Journal. He is the only one I
have found so far who has stuck completely with diet and lifestyle changes, most
of the other stories I have read have generally had some form of radiotherapy
as well as diet and supplements. I have written to Terry and we have exchanged
a few emails.
I've
printed out an article Management of Prostate Cancer by Charles E. Myers and have
written and received an email back from them. When I hear My Terry explaining
the situation (as he did this afternoon to the dietician) I can see he has a pretty
good grasp of what is involved and what is going on. At the end of the day whatever
he does will be his decision, I am only here to provide him with all that he needs
to make an informed decision and then support him as needed.
He
currently is going to have another PSA test in September and re-evaluate. He has
been told that at 62 and in good health he has all the options open to him but
after 65 they are not keen to perform the radical operation. He is currently expecting
to have this operation either later this year or early next depending on the PSA
tests. We have both appreciated not being pushed into any decision and have felt
there is much support available now for people in our position.
We
can see how much this has changed in such a short space of time from the experiences
in your stories. We can also appreciate that it is a very personal decision based
on ones personal circumstances. I suppose Terry is fortunate in that he is in
a stable long term relationship. We have been married 42 years and still have
a good relationship. The decisions would be different if a man was just starting
a new relationship for instance. Please email us if you think we can be of specific
help in any way. Jean Spence
[Update
January 2003] Terry SPENCE is now 63 with a PSA of 17.8. His current treatment
is diet, vitamin and mineral supplements and exercise. Known as Watchful Waiting
Terry's
story update: Following the initial diagnosis we started to fine tune our existing
diet to become mainly vegetarian with regular input of fish in diet. The September
PSA came in lower at 14.6 but the last one in December was 17.8. We are not sure
what to make of this so are waiting to see what the March PSA tells us.
Terry
is now taking half a teaspoon of liquid Selenium daily 200mcg equivalent and intends
to start on Trinovin tablets shortly (Red Clover). Terry still has no symptoms
of any problems with his Prostate and is in good health. He has lost a small amount
of weight and is quite relaxed. He is not thrilled about any of the other options
for treatment on offer. He is great with the diet and vitamin pills etc.
The
quality of our life has been good for the past 6 months so don't regret the decision
to spend time trying to find a better solution.
[Update
September 2003]
Terry
had a PSA test in June 2003 just 12 months after diagnosis and this was 20.5.
The PSA had increased by 25% in the past 12 months and it doubled in the previous
18 months so I feel we had slowed it down. However a PSA of 20.5 was too high
to ignore.
It
took a further 2 months before we could see the urologist and the tumour had grown
the specialist thought it was still localised, but he upgraded from T2 to a T2
possibly T3. The Bone Scan was still clear and there was an improvement in the
shoulder, so alternatives have helped this.
September
1st was the planning day, and September 16th Terry starts EBRT for 7 weeks. We
feel comfortable about the decision given the statistics he was faced with. He
was never comfortable about the idea of an operation.
[Update
May 2004]
Terry's PSA readings are 13 April 04 - 6.02 and 2 January 04 -9.06 and the last
one taken prior to radiotherapy in September 03 was 5 June 03 -20.5 so I guess
it rose higher than that by September.
His
experiences with radiotherapy were very good. He didn't have any Bowel problems
and only experience an urgency and burning sensation on urinating for about 2-3
weeks and this was dealt with by using a product called URAL (a fizzy powder to
make the urine more alkaline I think.) Some Cranberry juice and the urologist
prescribed a tablet to calm things down a bit. I bought some pads but he never
needed them. We worked out where all the toilets were and he caught buses and
trains and went by car to the railway station without any problem. The Clinic
was efficient and really good. I think he actually enjoyed the time down there.
He has never had any further urinary problems since. He had 3D Conformal Beam
Radiation. We have heard equally good reports from others at this clinic.
The
Radiologist believes that because of the good decline in numbers in the first
3 months that it was still confined to the prostate. The Urologist had felt it
might me but possibly might not. A bit borderline by this stage. At this point
in time if Terry had to make the choice again he would probably be happy to have
this treatment and would probably have had it 6 months earlier. There has certainly
been no loss of quality of life in any of this. He didn't have any symptoms before
the treatment, without the PSA readings he would not have known about the cancer.
If
you need any more information just ask.
[Update
December 2004]
Terry's
PSA was great it has halved again to below 2 now. which is good given we started
with over 20. He has an appointment with the urologist in February. They told
us to make it in 12 months after he saw him last January.
[Update
March 2006]
The
PSA has continued to go down and last October it reached < 0.10 ng/ml (0.73
ng/ml). Terry has had no problems until December when he had his first UTI (Urinary
Tract Infection) episode. This was quickly cleared up with anti-biotics and the
suggestion he drinks more water. He takes Cranberry and Vitamin C tablets and
we still drink Green Tea and try to keep to a healthy diet. He is retired now
and last July we went on an extended caravan holiday into Queensland and arrived
home in November.
We
hope to go again and travel further North this year. Next PSA is due in April
as Terry was advised to delay after the UTI because that would have raised it.
We are only allowed 4 free tests per year and the urologist had suggested we only
needed to have 2 unless concerned.
[Update
May 2006]
Terry's
PSA was 0.60 ng/ml this time, down slightly. At this level <1.00 it doesn't make
a lot of difference but it is good news and reassuring.
[Update
June 2007]
There
is no change. The PSA remains <1 and we are only getting them at 6 month intervals
the last one being April 2007. The only problem since treatment was a small amount
of blood in the urine about a year ago which quickly cleared up with anti-biotics
and no problem with urinary, bowel or potency since. We are about to set off once
again on our retirement Winter holiday, this time round Western Australia to Darwin
and back to Adelaide. General health excellent.
Our
Email Address is: tjmspence@bigpond.com
