THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2014 SO THERE IS NO UPDATE.

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.

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!!

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.

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, potency; 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. [Although the Dr. Red looks and sounds good, there are no published studies to indicate its real value. It is a long way form killing cells in a petri dish to achieving the same thing in a human].

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

PSA <.01, continence no change, ED half overcome with Caverject but wife still not interested. Visited phychologist in attempt to better deal with the crappy days but no concrete result. Still get agro/teary mood swings and hot flushes from Zoladex. FRUSTRATED!!!

Hi Folks,

Latest blood test shows PSA still less than 0.1, continence no change, have had an odd infrequent partial "stand to attention", but not sufficient for a bit of fun.

Cheers Neil Connell.

Hi Folks,

Visited Urologist in May and he is happy with overall progress but can offer no hope on ED rather than Caverject. PSA <0.1, Continence same (use one Careferee, BarelyThere pad daily),

ED . . . you can probably hear me scream from there!! Still use Caverject occasionally/ seldomly to give my mate a help along but the "boss" just ain't interested. Recently found out, surreptitiously, that she rang a funeral parlour when I was first diagnosed, so wondering if I karked it back then and can't win back the ground.

Liver and kidney functions all OK, though vit D is down despite taking D caps and iron has dropped from 33 to 22 since last test. Plus male hormone is 1.2 . . . no wonder I'm feeling like a "bitch". Zoladex is certainly doing it's job but wonder if it's also the reason for the vit D and iron readings + hot flushes, mood swings: so what's next?

Have had a period of "down" recently but not going back to Psychologist, though chat with my GP helped. Guess I need someone to have heart-to-heart with but my best friend lives in Qld and don't get to visit him and my family very often . . . I'm displaced in the a...hole of Oz.

Sorry for the grumpiness but need to vent.

Cheers,

Neil.

January PSA showed 0.10 though not too sure of the +/- variation in the testing. Another blood test this week just to keep track. Zoladex "shot" and 6-monthly urologist visit next week. ED and continence - no change.

Cheers Neil

SOS (same 'ol shit): PSA .06, no change to ED and continence. Took a 3 month course of daily Cialis but no obvious benefit (other than the Chemist's)!! Need to source some "feel good".

Hi Folks, Last 3 PSAs 0.06, 0.12, 0.2 and went for another PSA test today. Bone scan and body scan all clear so guess the little bugger is hiding. Bone density test OK.

ED, Incontinence same . . . crap! Several visits to Oncology to assess situation and plan next line of attack...

PSA risen from <0.10 to 2.1 in 6 months, regular blood tests and visits to oncologist though no new treatment as yet. Underwent scans back then but no discernible signs.

ED: depressingly the same. Incontinence: appointment in Jan for TENS treatment.

Oncology visit mid Jan to see what's next...

June PSA 8.5, March 4.6 - now on monthly trips to oncology. No sub-treatment until PSA is 10. Oncologist talking about another set of scans as earlier ones couldn't find the barsteward!! ED miserably the same, continence slightly worse when exerting from work/lifting etc. Undergoing TENS therapy to try to improve continence. On happy pills as was starting to feel melancholy (up to shit) most of the time - no motivation for anything!! Cheers, Neil

PSA 17, now on Cosudex tablets as well as quarterly Zoladex implant. Some increse in incontinence despite having recently undergone a further clinical tens treatment which had worked previously. ED no change. Specialist spoke about "doubing time" so will have to do some homework.

PSA 39, continence slightly worse, ED same. Cracked rib over Xmas break which showed up in X-ray, sent for Isotope Bone Scan on 9th Jan which showed multiple spots on rib cage, sacrum and right hip. Knees and wrists also worse since May 2011.

Permanent pain in pelvic floor/tail bone area, Endone to relieve pain but constipation felt like passing barbed wire package, side effects worse than treatment. Also taking Mersyndol night strength and Nurofen + along with Durolax to overcome being clogged up.

Oncologist: discontinue Cosudex and go back in two months. Asked about scan to find source of pain but told not necessary.

28th March: Visit oncology PSA 76. Have been dealing with continual pain in the sarcum area and on pain killers but they only take the edge of the pain and make the body feel droopy. Due back at Oncology on 18th. Checked myself into hospital on Easter Mon in the hope of improved pain mgmt, released following Sat with more meds than I can remember and 5 consecutive appointments at Peter Mac for radiation treatment in sarcum area, but results slow to show. Continence bad, constipation crook and pain whenever doing the biz. Have return appointments to both Peter Mac and Box Hill Hosp. to review treatments and organize chemo . . . ain't life grand!?

Completed 5 courses of radiation therapy from 8th to 12th April on sacrum with some success, as am now able to move around somewhat longer before pain becomes a problem in the area.

Had X-ray, MRI (interesting sounds in there) and bone scan (that warm stuff was niiiiiiice) etc when in hosp after Easter. Now on several painkillers with varying doses depending on day/night regimen.

Have some good days, just off days and not-so-good days, where I've had to have Palliative Care hook up a pump with painkillers and anti-nausea, fun :: fun :: fun!!

Had jaw X-ray done, probably because PSA now a "jaw-dropping" . . . 168. Ha, ha!!

Commenced chemo today, 23rd May, next course in 3 weeks along with specialist visit. On a brew of Taxotere (Docetaxel); Zometa, for bones and anti nausea, plus a saline drip to flush lines etc. Guess I'll have to substitute the saline with some Johnny Blue, Platinum or XR21 next time round, just to liven things up a bit.

Had third treatment with Taxotere, Zometa, Palonosetron and Dexamethasone on Thurs, 4th July, still no Johnny for that last "flush"! Get days where you feel OK or others where you feel "off" all day. Some intermittent pain in ribs and sacrum. Some days feel great and try to potter around, but have to chill out before too long and up the "happy pills" to numb things down again! PSA at first treatment 162, second 214 and third 164. Next soup up in 3 weeks.

4th Taxotere, Zometa and anti-nausea treatment on Thu 25th. PSA up to 224, though having trouble clearning up on-going UTI, which means crappy sleeps with a loo trip every 1.5 to 2 hrs at night. Hooked up a leg bag and sheath last PM and and had best sleep for 3 weeks. Some raspberry juice production, patricularly if sitting on hard seats. Intermittent pain in ribs on back RH side, but "happy juice" takes the edge off.

Neil's e-mail address is: neilscon AT gmail.com (replace "AT" with "@")

NOTE: Neil has not updated his story for more than 15 months, so you may not receive any response from him.