Neil
and Yvonne Connell live in Victoria, Australia. Neil was just 52 when he was diagnosed
with PCa in August 2002. His PSA was 5.2 with a Gleason of 6. He decided that
radical prostectomy was his treatment of choice.
Neil's story: I realise
this may seem somewhat long but there were numerous things of which I was not
aware and felt that I need to cover every issue that I can remember.
Brief
medical history:
Vasectomy December 1988
Hypertension and palipatations,
Winter 1998 (isoptin, zestril and astrix)
Varicose vein operation, Spring
1998
Hernia operation (groin), Spring 2000
Prostate cancer August 2002
During
the late 1980s two family members on my mother's side died of cancer, an aunt
with liver cancer and an uncle with stomach cancer. With no record on my father's
side.
I
had been experiencing continence problems for several months and my GP performed
a DRE which showed a slight enlargement, Had my first PSA in Spring 2001.
In
July 2002 a further DRE showed a slight change from previously and my PSA was
5.2, I was referred to a Urologist who ordered a biopsy.
The
next urological appointment was due 4 weeks after the biopsy, but I received a
call from the Specialist moving the appointment forward two weeks with the accompanying
statement."You have a bit of a tumour". The biopsy showed tumour cells
in four of the six samples, Gleason Scale 6; I also underwent a CAT scan and was
booked into a public hospital with an expected wait of 4 to 6 weeks.
I
left the Urologist's surgery with only the information shown on an anatomical
colour chart, the Gleason Scale and worst-case-scenarios buzzing through my head.
There were no booklets, brochures or instructions on where I could source information,
so I turned to the web, making sure sites were those of reputable cancer research/information
groups.
The
advice from both my GP and the Urologist was for radical prostatectomy, this was
further reinforced at the pre-op. clinic a week before the operation. I spoke
with the Registrar, Anesthetist, Doctors and other members of staff, who gave
me a very detailed explanation of the procedure, including minimizing nerve damage
where possible and also described what would be connected to me afterwards.
I
was asked to confirm my identity, explain my procedure and what medication I was
taking. Underwent a chest X-ray; having quit smoking 17 years earlier.
While
I had sought information from various sources, some of the most valuable advice
and instructions were those I received from the Clinical Sister during the pre-op
clinic. She explained and demonstrated the catheter and what I could expect and
the need for a pad or pouch for after removal of the catheter (I settled for the
pouch as it seemed more practical).
The
need to exercise the pelvic floor muscle was explained, though I had been using
it extensively since my continence problem started. Further, that there would
be no ejaculate, an erection was not necessary to achieve orgasm, and that it
could be a year before my potency returned to its pre-op state. I was also given
reading matter which I feel would have been more beneficial when I left the Specialist
after diagnosis.
I
was also informed that a local thespian, Allan Hopgood, had undergone the procedure
and had produced a video and written a book, neither of which I have seen. At
the time of the clinic one of the doctors had the hospital's copy of the video,
though it would have been good to watch during my time in hospital.
From
the time of diagnosis until the procedure I was taking 6 antioxidant capsules
of Tegreen 97 daily; recommended by a naturopath, and have been a regular tea
drinker for many years, with 4 to 6 large cups daily. I had also been taking Vical
plus+ antioxidants lozenges, containing green tea and grape seed extract, for
several months prior to diagnosis, but ceased after surgery.
Obviously,
neither appeared to have had any beneficial effect, though I had heard of prostate
cancer being "cured" by the Tegreen 97, but have no knowledge of the
grade of cancer etc. or whether it was in remission or cured.
I
arrived for the operation on the morning of 17th September, was booked in, directed
to the surgical waiting room and was given the customary "costume" and
a pair of surgical stockings.
At
the prescribed time I dutifully donned the attire (though the paper underwear
lasted minutes), was given the final once-over and boarded the gurney and on my
way to theatre. I was somewhat muzed by the African scenery affixed to the ceiling
in the waiting area.
While
I felt some trepidation about my situation (I regard going under anaesthetic like
an uninterrupted deep sleep), knowing that when I woke my personal world would
be a vastly different place!
I
was wheeled into the theatre ante-room, prepared and had the "electric blanket"
put over me. I noticed the temperature was decidedly lower than the rest of the
hospital. My next memory was in recovery looking at the ceilingscape, then being
wheeled to the lift where I fleetingly caught the friendly face of a concerned
in-law who worked on the surgical floor.
I
was up on the second day though only managed to sit for a short while. During
the ice tests on my groin area, I could progressively feel more and more sensation;
the tape holding the epidural had rolled and it was gradually pulling it out,
to the extent that it was removed by the end of the second day, one day earlier
than normal.
Consequently,
the tube in my jugular was also removed at the start of day three and I was disconnected
from all but the catheter by day four but still had two drain tubes with collection
bags. I was showering by the morning of the third day and sitting up most of the
time.
I
continued to wear a hospital gown as there was the occasional spill when the bags
on the drain tubes were changed. This gown caused some discomfort as I was in
a shared ward with a female directly opposite, so I had to be careful how I sat
and also when standing up and sitting again. I kept moving the curtain just enough
to allow some modesty.
I
was on solid food by the fifth day and felt minimal pain after the removal of
the plumbing, only taking two panadol nightly. I was instructed on the use of
the day and night bags on the fifth day and was looking after it myself until
release on the seventh day. The left drain tube was removed on the evening of
the fifth day and the right the next evening.
Some
sensations that I had not been made aware of was then when I was about to pass
wind or have a bowel motion, I could feel them passing the site of the operation,
this persisted for three to four weeks.
Upon
my return home I had the occasional accident: one was when the tube connecting
the day bag disconnected from the catheter during the night and the other was
when the drain tube from the day bag tore the bag due to the movement of the night
bag tube. Consequently I strapped the night bag tube to my ankle using a velcro
strap used for holding tennis racquets or the like together.
One
week after release from hospital my GP removed the 18 clips, and it took another
two weeks for the majority of the wound to heal with two small areas taking a
further week.
Another
difficulty was that my family were unable to dress my wounds, so I propped a magnified
shaving mirror in front of myself and set about the task. When the wounds closed
I applied red rose hip oil but found it left a yellow stain on my singlet.
I
was instructed to drink two to three litres of water a day and grabbed a jug,
after several days I was informed it was a two litre jug but was easily drinking
three jugs daily (cordial flavoured), though the day bag lasted less than two
hours. I also took two sachets of ural for the duration the catheter was in place
and two mersyndol nightly to help me sleep.
During
urination when seated there was some blood and urine by-passing the catheter with
some associated discomfort. Until late in the third week clots and blood-coloured
urine also entered the bag becoming less frequent as time went by.
At
my three week visit to the hospital I was informed that the cancer was grade 8
and rather aggressive. I also had the catheter removed and despite pelvic floor
muscle exercises was having occasional leaks, usually when I exert myself, so
I wear a continence pouch, one lasts a day.
One
disadvantage I noticed with the pouch was that, when I leant forward to tie my
shoes or the like, I tended to come out and any leakage showed on my underwear.
I
returned to work at five and a half weeks, though on light duties, and was back
to full duties at seven weeks operating a die-cutting press. I also play a bass
drum in a Pipe Band (it weighs 11 kilograms) and was back to band duties by the
eighth week. Driving my manual car regularly by the sixth week, though infrequent
driving of an auto at four weeks.
At
five weeks I had a blood test and visited the hospital at six weeks. My PSA reading
was 0.6 and am due for a further blood test in January next. If the reading has
not reduced by then the Surgeon mentioned radio-treatment or hormone therapy.
While
I have been unable to have an erection, my first orgasm was around four weeks,
though the site of the surgery was somewhat tender for several hours afterward.
Walking for short periods was OK, though if overdone, I could also feel the tenderness
at the site.
Mentally
I am ready and rearing to go, but physically I have no reaction, though I have
felt an occasion fleeting response.
An
Xmas present I purchased for my wife was a vibrating penis. I wrapped and placed
under the tree, it elicited a neutral response but was a topic of conversation
at the family's Xmas lunch. Also, because I am flaccid, she is having great difficulty
in bringing me to orgasm.
I
survived our family Xmas during which we have free run of a large leisure centre
and usually includes badminton, netball and volleyball. I played a full game of
netball, fell heavily twice and also played a game of volleyball, with no ill-effects
except for the usual sore leg muscles for several days.
My
GP says that some feelings may start to return around the fourth month, and also
mentioned viagra or injections (my son recommends the implant), but the act is
supposed to be natural, not an appointment/arrangement.
I
have also come across information of a battery operated device somewhat akin to
a penis enlarger but at $A400 to $A600 it's out of the question. I then searched
penis-enlargers, erection-enhancers on the web (Australia only) and found some
that assist erections in the less than $A100 category. Being mechanically minded,
using of one of these devices with pressure regulated compressed air to create
a vacuum has me thinking. Maybe construct my own hybrid!!
Have
wondered whether products like ginseng, horny goat weed etc. could be of help
as they purport to help increase circulation. Was also told cayenne pepper assists
with the circulatory system. Does anyone have any first-hand experience with these
remedies?
The
Victorian Cancer Council asked me to complete a survey, but as a layman, I felt
it's range was too narrow. It covered diet and family history etc. but did not
include things like light/heavy beer, ordinary/diet soft drinks, sugar/sugar substitutes,
coffee or decaf etc.
It
is now the first week of Jan. 2003: I still use one pouch a day and erections
are non-existent. The family have five cars and we do our own repairs sitting
on a rubber mat on the ground, by the end of the day I can feel a mild sensation
at the operation site.
Updated March 30, 2003
Neil is now 52 and his current PSA is 0.9. His
is currently having no treatment
His story update:
TREATMENT:
While all treatment options were explained to me, the fact that seeding and Chemo
both effect potency, and can also harm surrounding organs over time, reinforced
my decision to have surgery. Two weeks after my operation I took a 60 day course
of antioxidant tablets and am not sure if they had any significant effect!
DIET:
To date I am not on a diet and have not changed by eating-habits, although we
watch the amount of fatty foods we eat and use minimal salt. I do have a penchant
for potato chips, chocolate and Coca Cola, but try to curb my urges, a little.
. .
CONTINENCE:
If I hold on too long and suppress the urge more than once, then need to sit and
I have difficulty stopping leakage as I'm sitting and sometimes dampen my jocks
and the seat. I also find that Tena have discontinued the continence pouches and
am not keen on having to wear pads, talk about neutering and feminising, adding
insult to injury.
SPECIALIST:
Attended the outpatients clinic 22/1/03; PSA 0.9 up from 0.6 in Nov. 2002. Was
informed that there was a lot of tumour at time of operation and some in the lymph
glands; would have been good to be told just after operation as it now appears
more serious than at initial diagnosis. I was told radiation therapy would not
be of any benefit. I return in 3 months for a further visit and if PSA still rising
hormone therapy would be most likely, though side-effects sound ominous.
I
am continuing with pelvic floor muscle exercises, though they seem ineffectual.
Have heard of a clinic where they use a TeNs machine with a high success rate.
Potency 0!!
Updated April 30, 2003
Neil
is now 52. His PSA is 1.9 and he has decided to change to Hormone Therapy
His story update is: I visited my specialist 16/4; PSA 1.9; 29/4 started
hormone tablets, Androcur 100mg twice daily. Had a list of questions for doctor
and he also had a trainee doctor with him so I gleaned further information. In
essence, the cure, by Radical Prostatectomy, wasn't completely successful.
I
have had no improvement with continence and my potency is Nil: He suggested I
try Viagra or vacuum erection device (pump). On a scale of cost, a pump can be
purchased for around the price of one Viagra script.
Visit
GP: to obtain scripts for Androcur and Viagra. He wants to take a blood test 4
weeks after commencement of hormone therapy to check kidney function, fluid retention
and other possible side effects.
[Update
July 2003 ]
Visit
Urologist: PSA 0.3 after 6 weeks of Androcur.
Side
effects - shortness of breath and hot/cold sweats; treatment changed to quarterly
Zoladex implant.
Continence:
minor improvement. Potency: 0. Libido: reduced but still feel the urge.
Visit
GP: blood test OK. Have purchased pump: too small to generate useable erection,
purchased larger version but will need broader ring to maintain erection - lack
of motivation.
14/7/03
received Zoladex implant. Visit impotence clinic, recommend injection treatment
$A1297 for 6 month course, unaffordable.
Visit
GP in 4 weeks for further blood test for liver/kidney function & PSA.
Oct.
03, PSA 0.1, Zoladex hormone implant.
Dec.
03, PSA 0.01, visit urologist.
Jan
04, Zoladex implant, next visit May 04.
Continence;
minor improvement, potence; 0
I am presently having a hassle with Sancella Aust. the local supplier of Tena
for Men incontinence pouches, they've been taken off the market and replaced by
a pad which is entirely unsatisfactory, while the initial response was helpful,
there's been nothing positive
During
visits to the Urologist in June, Dec 03 and May 04 my PSA has been consistently
<.1, and my GP has also had several PSA tests done with the same result. Continence
has not changed (about 90%) and have some very minimal improvement in erectile
function though insufficient to remove the feeling of "Eunuch".
Have
sourced some mens pouches (Molimed from ParaQuad, Melbourne, Victoria, OZ) since
Tena discontinued manufacture and replaced them with the absolutely useless [for
me] "mini pads" which I believe are satisfactory for those who have unfortunately
had some penile recession.
Hormone
therapy (Zoladex) is still effective with the only side-effect being hot flushes,
predominantly during winter, and has pretty well removed any urges which is absolutely
frustrating as I used to class myself as "a dirty old man", due to my then very
high drive! Does anyone know if products like Wyld, Horny Goat Weed etc. help
"retrieve" what one has lost........
Neil
is now 54 and his current PSA is <0.10 ng/ml. His current treatment is Hormone
Therapy (Zoladex). Here's what he was to say:
PSA
remains steady at <.1. Visit Urologist November 04 and regular trips to GP for
quarterly Zoladex implant, next due in mid Jan 05.
Erectile Dysfunction; no improvement.
Undergoing
treatment at Continence Clinic (about ten weeks), finally shown "correct" way
to do PFM exercises, and recording daily continence results. Using a Neuro-muscular
Stimulator 30 minutes daily for past three weeks. PM Thursday 30/12/04 after a
number of days with no leakage, decided to go without continence "aids", successfully
so far!!
Further
visit to Urologist in May, PSA remaining at <.1, now on annual visits, but GP
is keeping track of PSA and organ function, quarterly Zoladex hormone implant,
still getting hot flushes.
Continence:
remains at 99.9% since treatment at clinic late 04 and discontinuing soakers on
New Years Eve.
ED:
some minor improvement but not sufficient to "do the deed". Bought Levitra but
haven't put it to the test, just don't get the physical "urge" thanks to hormone;
mentally climbing the walls!
My
PSA is less than 0.10 ng/ml; my continence is steady at 99%; there is minimal
improvement with ED, usually when reclining on the "throne", nothing useable or
sustainable.
I
tried Levitra but me 'ol mate just hangs around, aaaaargh! Physician has suggested
trying Caverject.
A
generous benefactor has been shouting me the Dr Red Prostate Formula Ginger Punch
and am waiting for results of latest blood test. Info at www.brisbanesvineyard.com.au
*
Annual
visit to Urologist.
PSA
still <.1, general health good. Continence static. ED: tried Levitra with no result,
have purchased Caverject but have yet to do the jab! Still taking two 25mm doses
of Ginger Prostate Punch daily, though don't know how successful it is or how
to find out if it works, probably if PSA drops to 0. Noticed on Brisbane's Vineyards
website that they are trialing it with a number of cancers.
Urologist
mentioned that he and colleagues had discussions and said that prolonged hormone
treatment can lead to osteoporosis and memory loss. Though the decicion whether
to continue treatment or not was mine. Being a keen milk drinker and comparing
memory with peers, decided to continue treatment.
Dec
'06, last PSA <.1, continence unchanged.
Erectile
function, still dysfunctional!! Tried Caverject, about half dose, only got half
a raise, will try full dose next time. While a penis pump does achieve results,
unfortunately the hormone treatment puts paid to those good old, you beaut, URGES;
consequently your best mate just hangs around, so a mechanical approach has to
be considered . . . who's mechanical?
Hi
folks, Latest info is: PSA <.1; Continence, unchanged; ED, unchanged. Still on
Zoladex and taking Prostate Punch, continue to get hot flushes and mood swings,
which combined with ED, is affecting marriage.
Wife
can't cope with using "mechanical" means, and has had difficulty with my situation
since diagnosis, I am considering counselling but would be going alone!
Latest
PSA still <.1, Continence static, ED no change. Tried Caverject and had partial
result. Had read that regular injections can help regain some function over time,
and was planning to do it on a fortnightly basis but because there's no urge,
sort of forgot!
Going
to get some counselling early this year as having some difficulty coping, feeling
somewhat lethargic and lack movitation to work around the house etc.
Sometimes
consider discontinuing "whoremoan" (sic) treatment but just too bloody scared.
No longer take ginger prostate punch.
Certainly
the pits . . .!
Regards
Neil Connell
Neil's
Email Address is: neilsco@telstra.com
*WEBMASTER'S NOTE: ALTHOUGH THE DR RED LOOKS AND SOUNDS GOOD, THERE ARE NO PUBLISHED
STUDIES TO INDICATE IT'S REAL VALUE. IT IS A LONG WAY FROM KILLING CELLS IN A
PETRI DISH TO ACHIEVING THE SAME THING IN A HUMAN.
