Dennis
& Thelma Moore live in England. Dennis was 57 when diagnosed in June 2002.
His PSA was 7.8 with a Gleason Score of 6. As of February 2003 they are still
undecided regarding their treatment choice. 
Updated
Health Position - Dated: Monday, March 17, 2003
Dennis
had been doing the B17 therapy for many months and his PSA lowered from 7.8 to
5.4 then 4.9. However, because the treatment is cyanide based the government have
now stopped it coming into the country, Dennis was devastated and his count began
to rise again to 6.5. I went straight into the internet and spent many hours looking
for the best alternative, eventually finding the E mail address of the head of
Urology in Belgium and as a last resort thought I would mail him and explain Dennis's
situation. I offered a brief outline of Dennis's problems and explained that I
had found papers about cryosurgery with his name on, so asked whether he thought
Dennis could be a candidate for this.
I was shocked when I received a
reply the next morning saying that he thought he was a good candidate for cryosurgery
etc, however, he thought he was also a candidate for a newer non-invasive surgery
called HIFU. (High Intensity Focused Ultrasound) The doctor has communicated regularly
through E mail and we have arranged to go to Belgium this week for a consultation.
If after this Dennis is a suitable candidate we return for the treatment, which
entails a two to four day stay in hospital and back to work within a week.
This is the treatment that Dennis has opted for at this time, it's non invasive,
done with an epidural, (spinal injection) and recovery time is good. He doesn't
want an R.P., which is what he has been offered in England; he says he would rather
have quality of life than quantity, (at least, that is how he feels now). The
treatment costs about 5000 Euro, but worth every penny if it kills the cancer
cells.
Today we went to see our consultant in England to explain what
we were going to do, and although he still thinks that an R.P. is the best option,
he thinks that HIFU is a good second choice. (No, or very little side effects)
He says that HIFU for Dennis has a three out of four chance of being successful,
which in Dennis's book, as a gambling man, are good odds. Our local consultant
has also said that he will support us through it, which is brilliant, considering
the unknown when we return home.
I hope we are not chasing rainbows,
only time will tell, I have not yet heard this mentioned on your site, maybe it
will be an option for others, although I do think it depends on the individual
PSA and Gleason count.
Updated
Health Position - Dated: March 26, 2003
When
he stopped taking the B17 his count started to rise again, initially 7.8, with
B17 it went to 5.4 then 4.9, when the therapy stopped it rose to 6.6. I suppose
the information on alternative options are just not made readily available. Thank
goodness for the Internet, I feel I have learned so much in a short time. But
what about those people without access to Internet!!!!!!!!!!!!!!!
Our
visit to Belgium. The consultation went really well, he was a genuinely nice guy
who made us feel as relaxed as possible. He started by going through all the therapies
that we have already been offered, radical prostatectomy, radical radiation etc,
giving all the known side effects. Finally he talked about the HIFU, saying he
knew that was what we had come all this way for, but as a consultant he had to
ensure we knew all options available. He explained everything in great detail.
(While having a laugh on the way)
The procedure will be done using an
epidural with a light sedation, he said Dennis can either sleep or he will talk
to him. The reason for the sedation is that you have to lie completely still on
your side for about two hours. (Not a good thing to move because the cancer cells
are only in one half of Dennis's prostate, and in order for Dennis to remain potent,
the consultant will only use ultra sound on the affected side and do nerve sparing.
The 180-degree heat of the ultra sound kills the cancer, similar to the freezing
procedure in cryosurgery. The beauty of the treatment is that if the cancer returns
in say five years, they can repeat the procedure.
Then
came the tests, with which the consultant was very thorough. (One and a half hours).
He did several scans, internal examinations and tests and came to the conclusion
that Dennis would not need a TURPS first because his prostate is not enlarged.
(Sometimes they have to reposition the prostate before they can do the HIFU.)
He was even able to show us exactly where the cancer was, information that they
had been unable to give us in England.
He
asked Dennis to go away and think about it, however, Dennis had already made up
his mind to go ahead with the treatment and wanted to book a date there and then.
I think psychologically this is the treatment that will suit him, non invasive
and an early recovery to enable his return to work after a week. (If he had had
an RP we would have had to sell our business, because he would have been off for
at least 10 months.) Dennis has always said that he prefers quality of life than
quantity and psychologically could not face a lengthy incontinence period etc.
However, if this works, (they are using it in several countries), this consultant
has personally done 200 or more with a high success rate, what have we got to
lose?
Furthermore, the one and a half hours cost us £50; in England
a consultation of that length would have been nearer £200.
A date has
been fixed for the 4th May, but as there are no flights on a weekend we are going
out on the 2nd May and staying with friends who will take us to the hospital on
Sunday 4pm to prepare the bowel etc for an operation on the Monday morning. Dennis
will have a catheter in for a while, (unsure how long) but we have booked a flight
home on the Tuesday 6th May. He said the procedure is often done as an outpatient
procedure, how much easier can it get?
I hope this will help others to
look further a field for treatment, at least to let them know what is available,
at the end of the day it's their choice and we all have choices to make throughout
our lives.
[Update
18 May 2003].
We
arrived at the hospital in Belgium at 4p.m. to a mass of form filling, (luckily
we had a Belgium friend with us), however by 4,30pm we were in our room. It was
more like a hotel suite with a television and a wonderful view all over Belgium.
8p.m.
a nurse arrived to administer the dreaded enema, essentially to prepare the bowel
area for the HIFU treatment. Little did Den know that at 6a.m. she would be back
to administer another enema.
8a.m.
the surgeon arrived to discuss the operation, (any questions etc,)
9am. pre op jab.
9.15 a.m. taken to theatre. (Den felt quite relaxed)
1p.m.
Surgeon arrives to explain to me that the surgery had gone very well, he had scanned
the half of the prostate where the cancer was, and done the nerve sparing for
potency to remain. (which returned the next morning, much to Dens delight, however,
it will be a little while before he can test that). Surgeon said the op took 3
hours and he was now in intensive care to recover. (for 3hours)
3.30p.m
They brought Den back to room and he said he felt fine, however, because of epidural
injection, he was having problems with moving his legs. (which I found out afterwards
was the reason he spent all that time in intensive care.) His legs and feet were
like blocks of ice. He spent the rest of that day in bed as told and by the morning
he was able to get out of bed. They kept asking him if he had any pain, but Den
said that other than the catheta in his stomach being a little uncomfortable,
he felt fine. The surgery was non invasive so there were no other open wounds
to be concerned about.
The
surgeon arrived and confirmed that he was very pleased with how the op had gone.
He felt it was ok for us to travel home as arranged that day so we left the hospital
at 3p.m.
I
managed to get a wheelchair at the airport for Den because we had a five hour
wait for our flight. The staff in Belgium were excellent and pushed him to the
door of the plane. However, it was a bit different when we arrived in England,
he had to walk down steps for the first time and no wheelchairs. We eventually
arrived home at 10.30pm. exhausted.
After
we arrived home Den started to shake from head to foot, his whole body had gone
into shock. I warmed him with bottles and eventually he slept. Now after two weeks
of dressing his catheter, his stream is beginning to correct itself, he was told
to empty his bladder naturally and then let any excess out through the pipe. However,
he is not allowed to remove the pipe until there is under 50ml every time he goes.
He thinks now that another two or three days and he will have it removed.
We
now have to wait for 4 weeks from the op to have another PSA test, which should
have dropped dramatically, fingers crossed, and then see his consultant here in
England, who has said he will offer any follow up to save us flying to Belguim.
Thelma
writes:
My
husband has recently had another PSA test, results 0.1, which is basically as
low as it can be. He feels fine and has no side affects from the operation.
Sex
life, with the help of viagra has been normal, no problems in that department.
He knows he is a very lucky man, and appreciates the second chance to live his
life to the full.
I
only hope others will benefit from the information and the operation becomes readily
available for all.
Thelma
writes:
Just a line to say everything is still going well.
Last
PSA still 0.1, which is brilliant, Den has had no side effects at all, everything
in working order.
We
are going to a meeting on Wednesday to try to promote the op. The surgeon told
us that he travelled to Liberia recently to promote HIF. He had brilliant response,
all very interested, although he says there are some elderly professors that don't
like change so need some convincing.
Thelma
writes:
Just an update on Den's HIFU, his PSA count is now 0.07 ng/ml, which has probably
been the case for a while now. He asked for the test to be sent to another hospital
for a more accurate reading, so its probably been that low all along, which is
great.
Still
no side effects and everything is in good working order. Having quite a lot of
interest about HIFU from the site, which is good, and the surgeon is quite happy
to explain HIFU to those interested. He is a wonderful guy.
The
update on Den is that he has had no problems or side effects at all since our
last contact, January 2005, (can't believe it was that long ago).
It
is three years next week since he had HIFU, and gosh that has flown by. All seems
like a bad dream now. Den's PSA has stayed 0.1 or lower since the last update,
and he is 100% fit and well, also the Urologist only needs to see him once a year
now for checkup. (His last PSA was two weeks ago)
I
have sent many men to Belgium for HIFU, from all over the world now, and many
had read our story on the YANA site, our local site or an American site that has
our story on. OF all the men that have had the HIFU, we have not heard of any
having any lasting problems, and any at all were only the first few weeks trying
to get their urine flow back to normal. I think one had to return to hospital
to have a TURP op because of sludging, small pieces of tissue from the proceedure,
blocking the flow.
I
try to keep in touch with all I have sent over and I think most would opt for
the proceedure again if necessary.
Thelma
writes:
HI, sorry its been so long since last update, but when all is well one tends to
forget, and time passes so quickly. Den is absolutely well, no side effects whatsoever,
and everything in working order.
Thought
you may like a list of his PSA from beginning to latest, over five years.
18.7.02
- 7.9 (diagnosis)
31.1.03
-6.6
2.6.03
- 0.2 (after HIFU)
18.8.03
- 0.5
6.9.03
- 0.1
16.1.04
- 0.1
15.3.04
- 0.1
8.9.04
- 0.1
18.1.05
- 0.07
16.5.05
- 0.14
6.10.05
- 0.10
24.3.06
- 0.1
27.9.06
- 0.11
1.5.07
- 0.14
Den
will see his specialist once more and then signed off permanently. Best wishes
to all, and don't hesitate to contact.
This
is an update for Dennis Moore, written by his wife Thelma. Den has now been given
the final all clear at our local hospital, who has been following up his progress
for the last five years. Hence, no further appointments unless requested.
Den's PSA has remained stable at around 0.1 for the last five years, since treatment,
and has had no side effects whatsoever. He is in good health and looking forward
to his retirement very soon.
We
wish you all the best whatever treatment you choose, and if Den had to choose
again it would be HIFU every time.
Blessings,
Thelma & Den.
Thelma's Email Address is: tammy10@btconnect.com
