Jeremy
F and Laura live in Gauteng, South Africa. He was 51 when he was diagnosed in
March 2007. His initial PSA was 6.07 ng/ml, his Gleason Score was 4 and he was
staged T1c . His choice of treatment was Radical Perineal Prostatectomy. Here
is his story.
In February 2001 I had a PSA of 2.3. The next measurement
was done in August 2005 which showed it had increased to 4.49. During 2006 and
into 2007 my PSA continued to increase until I saw a urologist. My prostate felt
fine with the finger test (DRE) and I went through a course of antibiotics to
see if there might be an inflammatory condition causing the PSA to be high. This
did not succeed in reducing the PSA levels and consequently I had a biopsy in
March 2007 which determined that I had a low grade adenocarcinoma with a Gleason
score of 1 + 2 =3 but subsequently reassessed at 2+2=4. Recommended treatment
seemed to point to Brachytherapy. I was aged 51. I had no obvious symptoms leading
up to the biopsy other than the PSA stats.
I believe it is critical for
each patient to personally investigate the options open to him and to make a decision
on what is best for him. I began to thoroughly research prostate cancer through
books and extensive scouring of the internet which I found most useful. I read
of scare stories about the consequences of radical prostatectomies and the risks
of incontinence and impotence and this began to steer me towards radiation as
a therapy. At the same time I was trying to understand what circumstances had
led me to this cancer. I was a reasonably fit, active and slim individual who
drank little alcohol and seldom experienced any sort of cold or ill health. While
trying to understand the source of the cancer I began to investigate lifestyle
and dietary matters as possible contributory factors to getting the cancer. There
is also a family history - my father's brother having died of prostate cancer
- so genetics did play a role.
The key factor I needed to understand was
what had prevented my bodies natural defence systems from identifying and eradicating
the cancer when it first appeared. Why did it allow the cancer to survive and
grow? I began to form the opinion that modern day lifestyles (including stress),
use of chemicals, farming techniques which resulted in less nutritious foods and
Western diets etc were some of the contributory factors together with natural
ageing which resulted in a less effective immune system. This led me to the conclusion
that before I tried modern medical methods that I should first consider what I
could do to enhance my immune system to see if I could get it to react to the
cancer and eliminate it. In my research I came across the Gerson Therapy which
seemed to confirm that if I were to make dietary and other changes then I might
be able to stimulate my immune system sufficiently to get it to act against the
cancer. I followed the Gerson Therapy which included adopting a high vegetable
and fruit diet and cutting out all meat (red meat, chicken and fish). To cut a
long story short I followed this very demanding therapy for almost 9 months. I
was hoping to see a significant drop in PSA and while it did decline from a high
of 8.67 following my initial biopsy to 5.40 it was not delivering the results
I was hoping for. Ironically while I had lost almost 13 kg in body weight my prostate
had grown to over 60 cc (from 54 cc).
I decided to have a repeat biopsy
in April 2008. This time the urologist took 26 cores (13 in each lobe)versus 13
overall in the first biopsy. The result was still stage T1c with a Gleason score
of 2 + 3 = 5 but a higher percentage of cores were affected. With a larger prostate
and worse Gleason score I realised, with regret, that the dietary option had not
worked in my particular case. Nevertheless, I had had to try it otherwise I would
never have known whether a natural cure was possible. It still might work for
others - as I had spoken to patients who claimed to have been cured of prostate
cancer by the Gerson Therapy. The main attraction of an alternative approach was
that it was non-invasive and would allow me to retain my prostate if my immune
system had risen to the occassion to act against the cancer - and it would have
meant that I would not have to take the risks of incontinence and impotence following
conventional medical solutions.
I must stress that I took the risk of
delaying conventional treatment based upon my prostate cancer being slow growing,
there being no clear evidence of the cancer with the Digital Rectal Examination
and my grading being a 3 or 4 on the Gleason score. The big risk was that while
I experimented with the alternative approaches the cancer might extend beyond
the capsule which would mean that it would then spread throughout the body and
result in my ultimate death from prostate cancer. Once the cancer is outside the
capsule it would have been too late for surgery or radiation to eliminate the
cancer and prevent it spreading.
I now knew that I must make a decision
on a conventional treatment. Nevertheless, studying the natural approach had opened
my eyes to a more healthy lifestyle and diet which I believe should help me to
remain healthy and robust for much longer (once the cancer has been eradicated).
A healthier diet and lifestyle would also be of great benefit to my family and
particularly my sons who are obviously genetically predisposed to prostate cancer.
I
had studied all the options based upon my level of the disease which included
Radical Prostatectomy (including nerve sparing techniques and the Radical Perineal
Prostatectomy option),Proton Beam Therapy, External Beam Radiation Therapy (including
Intensity Modulated Radiation Therapy), Brachytherapy, Watchful Waiting, HIFU,
Cryotherapy, ADT etc. I mention these as there is a wide variety of differing
treatments for consideration. However, I reduced it to a choice between radiation
in the form of the implanted seeds (Brachytherapy) and radical prostatectomy.
This was based on the ease of the procedure, the expected successful outcome in
terms of cure and the least negative consequences from a lifestyle point of view
(primarily the risks of incontinence and impotence). I decided on Brachytherapy
but because my prostate was large I had hormone therapy to reduce the size of
the gland - because this would be preferable before having the seeds inserted
(allowing a lower radiation dose). One Zoladex pill was injected into my abdomen
and after two months this succeeded in reducing the size of the prostate by about
50% to just over 30 cc.
However, before proceeding with the Brachytherapy
treatment itself, circumstances arose which put me in touch with a surgeon in
another nearby city who specialised in the Radical Perineal Prostatectomy (RPP).
Whereas the regular prostatectomy is done through the abdomen above the pelvic
bone the RPP is done through the perineum (between the testicles and anus). This
has certain advantages over the abdomen procedure but is considered more complex
to perform. Nevertheless, when discussing the consequences of the RPP surgery
by this surgeon I discovered that the rates of incontinence and impotence were
not so different to Brachytherapy and were better than the surgery through the
abdomen. I then began to reconsider my decision on therapy and ultimately decided
on the RPP as my treatment of choice. My reasons were as follows:
1) I
was nervous about radiation in the body and the long term side effects that it
might have on adjacent organs, such as the bladder and rectum. Surgery, after
radiation, to the prostate or other organs in the pelvic cavity (eg bladder or
rectum) is much more difficult if not impossible.
2) There seems to be
increasing evidence that after 2 to 3 years that the rates of impotence and incontinence
become progressively worse with Brachytherapy - whilst the RPP results continue
to show improvement as the body recovers from the surgery and may get better than
Brachytherapy. Other radiation symptoms of burning on urination, frequency etc
also seem more problematic with radiation than with surgery.
3) The prostate
is removed with surgery and hopefully the cancer with it and so not leaving anything
behind which could continue to grow or spread (if not killed under the radiation
option).
4) A pathologist can examine the removed prostate and get a definitive
assessment of the extent of the cancer and its likely containment or spread outside
the capsule.
5) If cancer comes back after surgery you can still do radiation
but if radiation is done first then surgery is probably not possible (the organs
have been "fried" making surgery almost impossible).
6) I am relatively
young and healthy and would tolerate the more invasive surgery well. Patients
with poor health or older patients who would not cope well with the surgery would
probably suit Brachytherapy better.
7) After RPP the PSA should go to Zero
- there is no "PSA bounce" worries as there are after radiation and after Brachytherapy
the PSA never quite goes to NIL. Consequently, after surgery, should there be
any PSA at all then this would demonstrate that the prostate cancer had spread,
requiring further alternative treatments immediately.
8) Based on the best
surgeons for RPP and best radiation specialists for Brachytherapy the results
with RPP versus Brachytherapy were very similar - with time possibly seeming to
favour the surgery after a number of years after the procedure.
I thus
decided on the RPP. However, I must stress (and this is the reason that I have
gone into my analysis in such detail)that the patient must:
a) Take responsibility
and put in the time and effort to investigate the options he has available to
him and what the risk factors are for each procedure relative to his level of
disease, age etc.
b) He must understand his disease, its stage etc. It
is vital to prevent the disease from extending outside the prostate itself because
then it becomes difficult if not impossible to treat because it spreads throughout
the body.
c) He must understand that doctors push their speciality and
what they have been taught. I found it very difficult to chose between radiation
after consultations with the urologist and radiation oncologist and surgery after
consultations with the surgeon.
d)Understand that the most important factor
in terms of success of the therapy to effect a cure and to minimise the negative
consequences of ones choice is the skill of the surgeon or doctor performing the
procedure. I cannot emphasise this enough. Query the specific doctors training,
experience, number of operations done, results for people of your age and stage
of disease for success of the procedure and the consequences such as incontinence
and impotence. It is your body and your life! Get the best surgeon or radiation
specialist team you can find. Their skill determines your outcome!!!!! I also
researched their backgrounds on the internet. My surgeon has done over 1000 RPP
operations, had learnt the technique at Duke University in the USA, and is affiliated
with a university and had glowing references.
Personally I believe I located
the best surgeon in South Africa for the RPP and also consulted with one of the
top teams for Brachytherapy (urologist and radiation oncologist).
Having
decided on RPP form of surgery (less bleeding and less invasive, better statistics
for continence and potency than abdomen surgery)I had the operation in Pretoria
on 8 September 2008. I went into the hospital on the Monday morning and I went
home on the Saturday morning. I had a fair amount of pain on days two and three
but the pain was well managed but not pleasant. Having had the operation through
the perineum meant that sitting was painful and to be avoided. However, I was
up and walking (tenderly) very soon and I made a point of walking a number of
times a day in the hospital.
When I came home I walked around the garden
for one hour a day for the first two weeks until the catheter was removed. Initially
I walked like a really old man but each day I got stronger and walked better and
better. The catheter was a nuisance and caused painful bladder spasms on occasions
so I was relieved to have it out (two weeks after leaving hospital). I am getting
more mobile each day and managed to drive myself to a breakfast meeting this morning
(on the third day after catheter removal). I can say I am almost entirely continent
with only a little bleeding from the penis as a consequence, I think, of a massive
bladder spasm the day before the catheter was removed and two very small stress
leaks (eg. my 21 year old son gave me a bear hug lifting me off the ground). It
is also a little painful to urinate at the moment but this is improving each day.
But I have had effective control of urination from the moment of catheter removal
which has been a huge relief and this was one of the key reasons for opting for
the RPP over the abdominal surgery. Bladder control is not yet quite as good as
before the operation but it is very early days still and based upon my experience
so far I hope to stop wearing the pads the moment the bleeding from the penis
stops completely.
This is where I am in my recovery as at 29 September.
My next step is to have a PSA test in around two weeks time and hopefully will
record a zero. Then it will be three monthly PSA tests for the first year, becoming
less frequent as long as my PSA stays at zero.
Should anyone wish to contact
me please use my email. [Regrettably Jeremy
omitted to include his e-mail address when posting this story. Hopefully he will
give it in his updates.] I would be delighted to be of some help to
others. I know how difficult it is to make the choices you have to make.
Regards,
Jeremy
