  George
Hardy  and
Lynn live in Tyne & Wear , England. George was 54 when he was diagnosed in April
2005. His initial PSA was 182.0 ng/ml, his Gleason Score was 3+3=6 and he was
staged T4. The treatment that was chosen was Hormone Therapy (Androgen Deprivation
Therapy) plus Radiation (External Beam Radiation Therapy). Here is his story:
Earlier
this year I was getting tired and annoyed at having to get up 2 or 3 times a night
to pee. I blamed it on too many cups of tea before bedtime. Anyway, a few days
before my 54th birthday at the end of March I decided to see my GP about the problem.
On 24th March a blood test revealed a PSA level of 182.0 ng/ml .
From that
day things moved on at such a speed it`s almost a blur to me now.
April
12th: Urologist did a DRE and said he was 99% certain I had PCa. Ordered me in
for a cystoscopy.
April 14th: Biopsy. I should have been able to go home
after the anaesthetic wore off, but every damn thing went wrong. The blood just
wouldn't stop clotting. I ended up with a catheter forced into me and remained
in hospital 7 days even ending up having to have morphine and an emergency procedure
to clear my bladder of clots. I had told staff constantly that the catheter wasn't
working properly. They wouldn't listen. That was the first and last time I ever
trust anybody in the medical profession. I now question every single aspect of
my treatment and demand full involvement. This attitude has since paid off.
April
16th: I have a T4 and Gleason 3 + 3. The Gleason score is clouded in mystery.
I had to demand it time and time again, but heard just flimsy excuses. Therefore
I suspect it may be higher.
April 18th: Bone scan. Clear.
April
20th: X-Rays Pelvic area and skull. OK.
April 26th: Started hormone therapy:
6 x 50mg Cyproterone tablets daily
May 9th: I discovered the work of Prof
Jane
Plant regarding breast/prostate cancers and diet.
May12th: PSA level
: 48.7 ng/ml The Cyproterone was stopped and I had my first Zoladex implant (12
weeks dose)
May 15th: I started the Jane Plant diet 100%. No more dairy
food etc etc.
May 23rd: First MRI Scan. Showed spread to left seminal vesicle.
July
14th: My wife and I were invited to the home of Jane Plant and her husband. She
is a truly amazing, inspirational woman, and for such an eminent scientist, a
lovely down to earth person.
July 21st: PSA Level: 3.3 ng/ml
I spent
the best part of July pestering my urologist and the specialist nurse to get me
an appointment with an oncologist. There seemed to be a marked reluctance to do
this and I discovered that the urologist had intended to just keep me on hormones
and see me every 6 months. I wasn't going to accept this so I pushed like hell
and finally got my wish. It really does pay to be very firm....but very (reluctantly)
polite.
Aug 4th: 2nd Zoladex Implant
Aug 9th: Seconod MRI Scan revealed
reduction in size of cancerous areas.
Aug 22nd: Finally got to see an oncologist,
19 weeks after diagnosis. He dismissed my theory that the tumour should really
be a T3b by informing me that there was pelvic floor involvement.....first time
this had ever been mentioned... most definitely T4 and that I must have Radiotherapy.
Sept
21st: Started RT. 37 treatments totalling 74Gy. Excellent machine: Siemens Primaton
Linear Accelerator combined with CT scanner. Very accurate 3D-CRT , known as IGRT...Image
Guided Radiotherapy.
Sept 27th: Saw my Oncologist again. He expressed amazement
that I was still able to have sex, though not too frequently, after so many months
on Zoladex. He sent me for another blood test. PSA: 2.01 ng/ml, Testosterone:
1.4. All is as it should be! He insists I stay on the Zoladex for a further 30
months. He also informed me that it is the right side of my pelvic wall which
is cancerous.
Oct 1st : After only eight RT treatments my urine flow is
very restricted.
Oct 9th: I started one capsule of Flomax a day to relax
muscles around the urethra and ease the restriction caused my swelling after RT.
Oct
13th: PSA : 0.9 ng/ml
Oct 21st: Urine flow even more restricted. Now given
2 Flomax a day.
Oct 27th: Third Zoladex Implant
Nov 8th: Saw Oncologist
and asked what happens next? He again insisted I must stay on Zoladex. He told
me no scans were planned for me now and that 3 monthly PSA tests would be the
only reliable markers of my PCa.
Nov 11th: Armistice Day...and it's ceasefire
day for me too as I have the final RT session. I have to say the RT has gone remarkably
smoothly. Very few side-effects: The increased frequency and urgency to pee, and
a few days where I was extremely tired. No skin irritations or bowel problems
whatsoever. I`m quite sure my diet helped me through this.
Dec
11th. It's a month since my last RT treatment, and the urination problems are
fast clearing. From needing to take 2 Flomax tablets a day within a week or so
of starting the RT I'm now able to go almost 48hrs before I feel the need to take
just one tablet to ease the flow. After
RT ended, I'll have to admit to some days of depression. I felt really low for
a while, as though the whole thing had finished in an anti-climax. However, I'm
told that this is quite normal. I do have a few down-days now and again, but the
optimistic days outnumber them. I'll
have a PSA test done in early January, then see the oncologist for the first time
post-RT, and to round off a busy few days I'll be having the 4th Zoladex injection
since my diagnosis in April this year.
Jan
5th 2006 I had my dreaded 3-monthly PSA test. Today (Jan 6th) my very friendly
and super efficient specialist nurse emailed me with the result. It's down to
0.2 ng/ml. I
really didn't expect this result because I thought all the radiation might have
given a distorted reading. PSA was 2.1 ng/ml at the start of RT in September and
0.9 ng/ml half way through my 37 RT sessions on 13th Oct 05. When
I think back to my very first result in March 05........It was 182 ng/ml, and
I didn't have a clue what PSA meant or how serious a T4 was. Geez.........dont
you learn a lot very fast when you know you just HAVE to do it! lol ' On
Monday 9th Jan I will see my oncologist for the first time since my RT ended,
and the following week I have to go and get that 'orrible Implant injected. That
will be my 4th 12-weekly Zoladex injection since diagnosis. Doesn't
time fly when you're having....ermmm....fun?? lol.
At
the latest appointment with my oncologist on Jan 9th this year, I quizzed him
about my original Gleason score, which I've always thought was shrouded in mystery.
He agreed with me that it should definitely have been Gleason 7 at the very least.
So, it seems my lack of faith in the urologist was well founded. Thank God I no
longer have to deal with the man.
At
my latest appointment with the oncologist he said he was very happy with the way
I'd gotten through Radiotherapy, and the fact that my PSA was now down to 0.20
ng/ml. He said that if I can provide stable PSA levels over the next year or so,
while on Zoladex, I should be able to stop the treatment and perhaps go intermittent
when my full three years is up. Ah
well.............only 26 months to go...and at least the "little blue pills" (Viagra)
continue to work well enough....not fantastically, but good enough I suppose!
On
30th March I had my 3-monthy PSA test, in advance of the next Zoladex implant
on 13th April. I'm
delighted to report that it's again 0.2 ng/ml, as I come up to one year since
diagnosis on 12th April 2005 with a PSA of 182 ng/ml.
For the last 2 months though, I've been feeling very cold and tired, and it seems
this is a side-effect of the Zoladex. I have none of the more common side effects
such as hot flashes etc. I'm
still able to have intercourse with the help of the little blue pills, but it's
been about 6 months since I was able to have an orgasm. I
appear to have survived the 37 RT treatments with no bad effects whatsoever, for
which I'm truly grateful.
Today
(July 6) I had my 6th three-monthly zoladex injection. Following my latest blood
test, I'm pleased to report my PSA is still stable at 0.2, and I'm told my blood
has never been as healthy for years. I'm sure I owe this to the Jane Plant diet.
I feel fit and healthy and the coldness and tiredness has passed. Prof Plant published
an updated version of "Your Life In Your Hands" in June of this year and I was
honoured to be included in the book as a case study. She also has a new website
dedicated to cancer patients, and this comes fully online on 1st August. The site
is called Cancer
Support International.
PSA
now <0.1 ng/ml. My local hospital lab only works to one decimal place, and I was
told that this latest level is too small for them to quantify. (I did have another
test at my main hopital 6 weeks ago, and the result there was 0.12 ng/ml) At
last! I never thought I'd get down to this level. It has taken 17 months to get
from 182 ng/ml to here, and I feel today is an important milestone in my journey.
I am still adhering strictly to the Jane Plant diet, absolutely NO dairy or processed
foods at all, and I continue to have 3-monthly Zoladex injections. However, I
will have been on these jabs for 2 years come April 2007, and I'm going to try
and persuade my oncologist that I should go intermittent with the treatment from
then. I will see him in October and I'll report my progress then. I'm
willing all of you to get encouraging results too. Don't forget, I am always willing
to answer any emails.
December
7th 2006:
Latest PSA: still <0.1 However, testosterone has now fallen to its lowest ever
level: 0.6 It was around 1.4 back in August. I have now come to the conclusion
that this depletion of testosterone has been the cause of the extreme fatigue
I have suffered since October. From June thru September I felt so well and full
of energy, even starting to work out 3 times a week at a gym. Then I began to
feel a tiredness I have never before experienced. I felt as though my body was
being totally drained of every ounce of energy and vitality. In the past I had
suffered a few tired days before and after each 3- monthly zoladex injection,
but this was different. I was worsening day by day. December
12th 2006.
Today I saw my oncologist and told him bluntly that I wanted my testosterone raised
somehow. I was hoping he would agree to me stopping Zoladex in April 2007 after
24 months of it, but he warned strongly against this in view of my high T4 cancer
staging. However, we reached a compromise. If my PSA can stay at <0.1 till Aug
07 (12 months at that level)) then I can a chance and stop treatment. December
20th 2006.
My oncologist rang me at home. He said he's been reconsidering my case, and agreed
that I was suffering badly because of the low testosterone. Apparently he is surprised
at how well I have done in the last 20 months and has suggested I now cease Zoladex
and begin Casodex 150, one tablet a day. Apparently
this doesn't destroy the testosterone, but allows it to access only the brain
receptors, not other parts of the body. He reckons I should soon regain my energy,
and even my libido!! WOW! I
am now awaiting a call from the hospital where I was very soon due to have another
Zoladex injection. Hopefully the new regime has been arranged. I
will keep you posted. I must admit, I could not have stood this exhaustion much
longer. I just couldn't funtion normally at all, every day started with an energy
level of zero, and it was soul destroying. I am truly praying that I may now be
on the road home, fingers crossed!
Feb
1st 2007.
After 6 weeks on Casodex 150 alone, PSA level remains stable at <0.1. but Testosterone
has at last risen: Now 0.9. It's now 20 weeks since the last zoladex injection
(12 weekly) and I'm only now beginning to feel some energy returning. I feel sure
that stopping Zoladex was right for me. The tiredness was just too much to cope
with after 20 months. It
seems to me that it's only guys who have had the combination of radical radiotherapy
PLUS the hormone injections who experience such extreme fatigue. I've known others
who have been on Zoladex alone for 5 years and not experienced this type of exhaustion.
Just my own theory!! Gotta blame somebody or something for almost 4 months as
a Zombie!!
MARCH
1st 2007 Latest Blood Test: PSA remains at <0.1 Testosterone 0.8!
Just
got results again. PSA is stable at <0.1 for the 8th consecutive month. I am aiming
for Christmas this year to be able to tell my onco that I wish to stop all treatment.
(Keeping everything crossed of course). That would be quite some result after
the T4 with such a poor prognosis!
May
29th 2007 Results: PSA <0.1 Testosterone now climbing: 1.9.
July
26th 2007 Results: PSA <0.1 Testosterone 7.1 nmol/L. August
9th 2007: Saw an endocrinologist about my tiredness which has been worsening.
He diagnosed extreme exhaustion, probably due to the effects of testosterone depriviation
for so long. Seven specific blood tests ordered, mainly hormonal. Have to wait
over 3 weeks for results. August
23rd 2007: PSA <0.1 Testosterone now up to 10.4 nmol/l.
Sept
18th 2007: Big BIG news...Both delighted and terrified now!! My
oncologist agreed to see me three months earlier than planned as I wanted to ask
if he would agree that I could stop or maybe reduce my current treatment of Casodex
150. I'd been on it for 38 weeks. Also, for 13 consecutive months my PSA had been
stable at <0.1 To
my amazement there was absolutely no argument from him. From today I am off all
treatment!! I will obviously have regular PSA tests and remain vigilant, but maybe,
JUST MAYBE....the beast is beaten. It's incredible that 30 months ago I was told
I had maybe 2 or 3 yrs left to live. In
my heart I believe that I was just plain stubborn (and lucky) that I decided to
fight the urologist's treatment plan, and that the combination of HT, 37 Radiotherapy
treatments PLUS keeping strictly to Prof Jane Plant's suggested diet all worked
together beautifully. I
am too sensible to say I'm cured, as I know the beast could return with a vengeance,
but for now I can feel at rest for a while. 20th
Sept 2007: Another Blood test: PSA < 0.1 for the 14th month. Testosterone up to
an amazing 15.2 UMOL/L. This was the result of changing from Zoladex(Lupron) to
Casodex 150 in December 2006 when my lowest ever testosterone count of 0.3 had
me on me knees with complete exhaustion.
Sept
20th 2007 PSA <0.1 Testosterone 15.2nmol/l Oct
15th 2007 (4 weeks off meds) PSA 0.18 Testosterone 20.00mnol/l Nov
8th 2007 (8 weeks drug-free) PSA 0.3 Testosterone 16.4nmol/l
Dec
6th 2007 PSA now 0.4ug/l Testosterone 19.6nmol/l Still no PSA "surge" and I'm
feeling so relieved about that after 12 weeks without any form of treatment. For
some reason, this 3-month marker was a real milestone for me. I worried more about
that result than all my previous ones!
Jan
4th 2008. PSA now 0.47 ng/ml after 16 weeks off all medication. It's rising at
a rate of 0.1 per month, something which doesn't worry me. I just wonder how long
it will take to reach that fabled plateau...and just what that plateau figure
actually is for me. Later: Jan
30th 2008 PSA. 0.7 ng/ml....a slightly higher rise this month. Testosterone 25.3mm/L....Never
seen this as high!(and never imagined I could get back to a normal level after
all the ADT)
Feb
20th 2008 PSA 0.7 Testosterone 22.6 nmol March
25th 2008 PSA 1.52 Oh? Doubled?? Oncologist expresses concern, but I reckon it's
OK...I DO have a prostate, after all. Testosterone 20.7 nmol It is now exactly
half a year, 26 weeks since I ceased all meds. April
22nd 2008 PSA 1.1 (Phew!) Testosterone 18.0 nmol (down again this month).
May
9th PSA 1.1 Testosterone 20.7 nmol June
3rd PSA 0.9 Testosterone 17.3 nmol July
1st PSA 1.2 Testosterone 22.3 nmol (41
weeks off all meds now)
July
29th 2008 PSA 1.0 Testosterone 18.6 nmol
On
Sept 16th I saw my oncologist, and it marked one full year with no meds. Results?....PSA
0.94 Testosterone 22.9. ?... the onco is astounded!!! He can't believe it's actually
down on previous appointments.
George's e-mail address is: jordi_lad02@hotmail.com
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