Routine exam by GP with DRE November 1993 and referred to Urology O/P clinic (Urologist Dr Stuart Gowland Christchurch Public Hospital. From June 1994 to 16 August 1994 PSA tests, ultrasound of prostate and biopsy (6) revealed high grade prostate cancer was advise by urologist possible regional metastasis. Recommended urgent TURP (Trans Urethral Resection Procedure) carried our 4 October 1994 Histology confirmed initial diagnosis. Presented oncology department Dr. Chris Wynne Christchurch Public Hospital 2 Oct 1994 PSA 5.6 Bone scan 12 Dec 1994 - Clear. oncology planning session 13 December - CT Scan.
Commenced radiation 28 December 1994 - total 28 sessions last one on
23 Feb 1995 - PSA 8.6.
July 1995 PSA 7.0
October 1995 PSA 5.5
Jan 1996 PSA 3.8
PSA remained at optimum level until Jan 1998 when it increased to 4.8 with steady increases to June 1999 (PSA 13.4) and by Jan 2000 it reached high point of 20.5. Oncologist (Dr Wynne) recommended anti androgen hormone (Flutamide) 250mg x 3 per day and PSA showed rapid decrease - so by November 2000 PSA down to 1.6 - lowest PSA recorded was 11 Feb 2002 - my 78th birthday it was 0.90.
Remained at low levels (average 1.8) until March 2004 Oncologist (Dr. Abdelaal) advised switch to Zoladex (injection) side effect (hot flushes - extreme) and unacceptable, refused second injection and back to Flutamide.
PSA again reduced to 1.0 by May 2004 - August 2004 PSA 6.0. Throughout 2005 PSA average 3.5 increasing to 6.1 Dec 2006 by December 2007 PSA 8.
Bone scan July 2008 Clear - PSA 7;
9 September 2008 PSA10.1 Bone scan December 2008 - Clear. General health - fair to good. Next PSA due March - oncology appointment April 2009.
I consider myself very fortunate to have lived so long after initial diagnosis, never considered treatment "a cure" but certainly a exceptional case of long remission.
Background: Born London, England 11 Feb 1924, younger of 2 sons, working class East End family. Father Tailor died 1974 aged 80 Mother died 1975 aged 79. Older Brother born1916 died 1975. No known family history of prostate cancer.
Served WW2, aircrew RAF, operational tour India/Burma 1944/45. Married 1946, 2 children, first born died SID 3 days. Second daughter living, 2 daughters, 1 granddaughter.
Emigrated to New Zealand 1954 RNZAF - aircrew 6 years then air Traffic services officer NZ CAA 26 years. retired aged 62. Married (2) 1956 - 3 Sons b NZ 1958 1961 1963 all in good health.
Religion - None (Atheist) Political affiliation: Democratic Socialist. Not particularly physically active - Hobbies: Playing Keyboard, Organ, Computer literate, Current affairs Humanism.
Appetite: very good, appreciate wide variety of all types of food. Non smoker past 40 years. Alcohol consumption relatively high age 18 - 60. Now 1 standard drink per day.
Well some months gone by since my last post but still soldiering on.
I had a bad spell last three weeks of December 2008 due to bleeding in lower part of stomach but apparently unrelated to the cancer. Bone scans December while in CPH showed no metastases.
PSA reading 12.5 repeated Feb 9 DOWN to 10.4 - Up in March 11.1 and up again in June 13.0. Flutamide three per day maintained, PSA 11 August DOWN again to 12.
For the past 6 weeks and more severe pain left loin and both knees, Oncologist has another look at last 2 bone scans, confirms no evidence of spread but notes "General deterioration of skeletal structure due to age related arthritis"
Pain in left loin getting worse this past 10 days, on Codeine 60 mg per day plus Panadol x 8 daily provides some relief but concerned this is only masking cause of pain. Rib cage left side suspected, go for X-Ray of chest this day. Will post again later.
Best wishes to all.
Last PSA check 14.3 up 3 on previous (6months) check. Ocologist check Sept 29th - have no significant bone pain, still very lethargic most of the day, but eat well and sleep well plus afternoon nap - nil desperandum! Can have quality or quantity of life, he tells me - mild depression from time to time with frequent severe headaches, take 8 Panadol a day (max) which helps a lot. Waterworks slowed up noticeably last 6 months thinking about asking for another TURP think it unlikely at my age - I'll be 86 in February next still, box on and hope to make 87.
Have been a member of Dignity Trust New Zealand (a Voluntary Euthanasia Group) which proposes a law change allowing for setting up of Dignity Havens which will offer a choice of Palliative Care or Ve with a quick exit. Took part in a short documentary on the subject - DVD turned out well and was well received by all that have seen it.
Anyone would like a copy please advise by e mail. DVD is free postage & packing NZ$6.00.
Cheers to all EG.
PSA reading in Jan 2010 was 15.1 a steady increase from the 11.0 in March 2009, however a few days before scheduled clinic at CPH on April 6 last PSA registered 11.1 a marked decrease and approx the same as a year previous.
However my long term Ocologist Dr Chris Wynne is now only doing limited clinics at CPH and moved to St George's a private hospital here in Christchurch where they have installed 2 new Linear Accelerators. His Senior Registrar was not available and I was seen by a junion reg. who had obviously not studied my file (first question "Have you had a PSA check recently?" - "Yeah, right, it's on the top page of my file in your hand" Now I have got to be one of the longest survivors with my initial Gleason score of 4/5 and PSA of 19.1 and that 16 years ago at the age of 70 - I got the distinct impression from this young man of "Ho Hum, he's still here and looks fine off you go old man and see you in six months time"
So, I am looking well for my age and very appreciative of the treatment and care I have had over the years. Usual aches and pains of old age due to skeletal degeneration shown up in X rays; I also learned from my GP that one indicator of metastases to (leg) bones was a marked increase in blood phosphates (you can Google this one) [This seems to be the PAP (prostatic acid phosphatase) an enzyme or biomarker secreted by prostate cells associated with a higher probability of disease outside the prostate when levels are 3.0 or higher; PAP elevations suggest that the disease is not OCD (organ confined disease) and mine are well within limits. Dr Strum always recommends this test, but it is rarely done - see A Strategy Of Success in the Treatment of Prostate Cancer] I have also learned that a long term colleague in Civil Aviation has recently been diagnosed with advanced PC his PSA being over 1,200. I have encouraged him to put his story on this site. Am awaiting more news from him on his prognosis.
Will report again in six months.
Cheers all EG
October 14 2010 Bone Scan Dept Nuclear Medicine Christchurch Public Hospital. Radiologist reports : "No metastases of the cancer detected"
PSA dipped from 15 to 11 then back to 15 again last check in August. Only present symptom is lack of physical energy - I can live with that!!
February 2 2011 Routine check with GP complete Blood count plus PSA now at 20.0, up from 15.1 last test. All other tests within normal range. Now 20.0 is the highest reading since initial treatment with EBT when reading went down rapidly to 1.0 and after a few years rose steadily back to 20.0 when I commenced the ADT (Flutamide) Rise would now seem to be exponential, however last Bone scan few months ago showed no progression to bones.
Apart from lower back paid (arthritis) general tiredness and occasional mild depression, get by OK. Saw GP yesterday and mentioned the downs (Black Dog!) and prescribed Fluoxetine HCL CA 20Mg 1 per day [aka Prozac]. Googled this and read all the detail including the side effects. No problem there, will check back with GP in a fortnight. I will be 87 on the February 11, and have every intention of making 88. I'll see how we are at that stage, if prognosis dismal have my own plans for exit.
Cheers to all, nil desperandum [Never despair.]
16 March 2011 appointment with consultant Dr Lisa Johanssen CPH reported last PSA at 18.0 a rise from 15.0 last August. Advised her of mild depression increasing in frequency, was offered change of ADT to Bicalutamide (Bicalox 50mg 1 tables per day) Ceased Flutamide treatment and commenced Bicalox 29th March.
Meantime had another PSA check 22 March came out at 16. So will wait three months on latest treatment and go for re check on PSA. The Prozac treatment has kicked in with a much improved mindset and feel more positive than ever!! Will report back in June.
Cheers to all.
PSA reading in August was 32. Saw Oncologist CPH 20 September 2011; next visit 24 January 2012.
I thought specialists comments on prognosis somewhat vague. However given that in January it will be 18 years since initial diagnosis and I will be 88 in February I've nothing to complain about!
Don't get as much physical exercise as I should although since the heart pacemaker implant in April I am feeling well, appetite is good and I enjoy a wide variety of food, sleep soudly 10 hours out ofte 24 and enjoy good company at Christchurch Brevet Club afternoon social once a fortnight.
Cheers to all.
Since my last post PSA has shown more rapid increase than previously.
Consultation with Oncologist in February resulted in Watch and Wait for 3 months to ascertain if rate of increase was exponential - there are no signs of bone pain and bone scan would be an option next visit, I am content with this as you will see from my long term (18 years) survival rate since diagnosis with a Gleason score of 4/5 I look forward to making 89, and possibly 90 (wiv a liddle bit ov luck!)
Routine visit to Oncologist CPH 19thJune 2012 PSA taken a week earlier was 85 (up from 66 in March). Fairly long discussion this time with new Registrar, but well read up on my extensive notes, could not be drawn on prognosis but emphasised that short of another bone scan (last one over 2 years ago) and given my age (now 88) and overall health which, apart from a continuing tired feeling - I was still in a pretty fair state. Apart from a long standing lower back pain due to spondylitis and minor aches of old age no acute pain in leg bones, he would look at another bone scan in three months time.
I really have had a really good run and mental processes as good as ever, so box on, sleep well and no worries, can't be bad!
Cheers all. EG
GP recommended bone scan a month ago and presented at Nuclear Medicine CPH 30/7/2012
Notified by GP by telephone this morning that report had been received from CPH "no metases found in bones" General detiorisation of lumbar region and joints due to aging process and arthritis/spondyiasis" 'Ooray! Onward to February next and 89 and thence to 90, my goal set years ago
Naturally enough I am greatly cheered with news of result. Good living to all of you out there and never despair. cheers EG
Was due for 3 monthly check with Oncologist at CPH 18 September, but unwell (unrelated circumstances) will get another appointment shortly. Meantime last PSA 2 weeks ago was 96 that is an increase of 11 since July test, carry on as usual.
Note: last entry shows "metastases spinal" in fact bone scan showed no spread whatsoever other than a general deterioration due to arthritis and aging.
PSA Check 20 Febuary 2013 - 100 - Up from 96 September 2012 - rate of increase would appear to have slowed down Now in my 19th year of survival - next PSA test August 2013, will check in again for update later. Cheers all EG
Subsequent to rapid increase over 12 months (PSA) Up to 147 in July current specialist ordered another bone scan, metastases to right thigh bone, carriled out EBT (Varian machine) and had 1 injection of Zoladex (3months supply) in belly fat. Had this before some years ago and could not continue due to silde effects, not so bad this time so we'll persevere. PSA backed off to 110 wilth test on 30th September. Next appointment with oncology 7 October. In January I will be into my 20th year of survival! (High grade aggresive Gleason 4/5) - prospect of making 90 next February excellent, new
goal....91 cheers all.
I have been lax in reporting in for a long time now, but here is current status as at 23 Nov 2014.
Now into my 21st year of survival with a 4/5 Gleason score and will be 91 in February 2015.
Continuing with Zoladex injections every 3 months in addition to 1 Bicalutamide pill daily. Just over a year ago PSA was146, next 86 then down to 66 in August last, most recent early November another drop to 62. Next appointment with consultant radiation specialist at Christchurch Public Hospital is December 8. General health is fairly good for a 90 year old, apart from a general lethargy/tiredness and the inevitable hot sweats every 90 minutes (only lasts 2 to 3 mins). Mentally alert but have to rely on electric mobility scooter for journeys over half a kilometre!
This is a post after many months, but cancer, like rust, never gives up! After several years on Flutamide I was switched to Bicalutamie, and for the last couple of years 3 monthly injections into my bellyfat (Zoladex), however just over a year ago the PSA reading commenced increasing reaching its highest figure yet of 145 one month ago Oncologist at CPH disconinued the Bicalutamide and advilsed of a relative;u new treatment produced in the UK by MacmillanCancerCare. As it had been approved by Pharmac for use on men with advanced pc (in my case it showed up in a scan on my left thigh. A single blast on the Xray machine, was seemingly successful, but since then the PSA started to increase once more. So I agreed to try the new drug (Abiretarone - (Zygist) Tablets are 250 mg and dosage is 4 tabs on an empty stomach (I am taking mine at 4 to 5 am as I have my last meal at 7pm and it is 8 am when I have breakfast) Now in my 4th week of treatment and no side effects whatever, although the printed info on the drug lists 6 possible side effects. The one drawback is I have to take 2 tabs of Predisone (with food) as the new drug causes a drop in the levell of steroids. I am not keen on Predisone for it causes patches of skin to turn purple, this is mainly on the arms and legs and is (supposedly) harmless. I still have to continue with the Zoladex injectios and still get regular hot flushes every couple of hours, however connsider this a small price to pay as I have had such a good run. Due for Oncology consultation 29 June and will update shortly thereafer.
After commencement of Abiterterone early July, after one month PSA showed a drop to 126 (from 166) however, after secondmonth onthe drug (plusZoladex) PSA went up again to 205. Furthermore consultant noted a deterioration in renal function; so ceased the steroid Predisone. He has advised me that should any breakthrough pain occur in my leg bones spot treatment with radiation would be indicated. My general health is good for my age and mental health unimpaired, so apart from the usual fatigue syndrome I have nothing to complain about! Cheers all. eg
Eric's e-mail address is: firstname.lastname@example.org