Jump to content

Diagnosed in 2003 - my journey


Recommended Posts

Prostate Cancer Diagnosis

In 2003 at age 63 years after several sessions with an urologist it was determined that with a PSA of 22, a DRE, a biopsy, a Gleason Score of 9 (4 and 5) and a CT scan I was diagnosed with Locally Advanced Prostate Cancer (T3NOMO) – Stage C, small volume, locally advanced.


T3NOMO – cancer had spread outside the prostate to surrounding tissues (TNM system)
• The extent of the primary tumor (T category)
• Whether the cancer has spread to nearby lymph nodes (N category)
• The absence or presence of distant metastasis (M category)


I had not had any symptoms although when I had a one or two beers I needed to have a pee and quite frequently thereafter.


Apart from the shock of the word “cancer” and its implications, the terms and procedures I was now involved in were all very new to me and a bit confusing. Friends and associates made light of the condition and I was frequently assured that that ‘’it won’t kill you” and ‘’you’ll die with it and not from it.’’  This was quite unhelpful and contrary to what I was being told by my Urologist and other qualified people.  At the time I was also aware that Prostate Cancer killed more men than Breast Cancer killed women each year (3500 plus).  


It was apparent to me that I needed to know more about Prostate Cancer its treatments and how to live with it.  I became a frequent visitor to the Andrology Australia Website and many of the publications from it.

I found the prostate biopsy quite a painful procedure and I felt quite queasy and unstable after it.  My urologist seemed to think that I had an unlimited pain threshold.  I subsequently found that other men had been given a local anesthetic prior to the biopsy not mentioned by my urologist at the time I had mine.  Some other men had the same experience also with my urologist – point one against him!


The cancer was considered too far advanced for surgery and in 2003 Radiation Therapy was the treatment option selected (At this time Bracchy Therapy was not an option because it was a relatively new treatment and evidence of its effectiveness was inconclusive).


Locally Advanced Prostate Cancer

Despite being told after my Radiation Therapy that the cancer was considered to be ‘’in remission’’, I began to experience problems with urination, including frequent urination (frequency), poor stream, difficulty starting (hesitancy), and waking frequently at night to urinate (nocturia).


It was found that the cancer had spread beyond the prostate, but was still within the prostate region.  It could be felt outside the prostate with DRE.  Cancer could be seen outside the prostate on scans and PSA which had fallen to less than 0.1ng/ml after radiation had started to rise again.



A combination of treatments was considered the most appropriate strategy.


My treatments commencing in 2003 comprised radiotherapy, Androgen Deprivation Therapy (or hormone therapy) Zoladex Injection, Cosudex, Androcur, Anandron tablets.


ADT had side effects for me, which included hot flushes, lack of sexual desire, mood changes, bone ache, tiredness and a loss of physical strength.


Exercise, particularly the type that builds strength, helped minimise these effects (canoeing, bike riding and some swimming).


Contrary to a suggestion in a recent Support Group Newsletter you DO need a hobby if you have Prostate Cancer.


Travel (making the actual arrangements),cooking, reading, an active interest in local and world affairs, voluntary English teaching for migrants at the local TAFE college, building and sailing remote control yachts are among my hobbies/pastimes).


Life can be active and rewarding despite a diagnosis of prostate cancer. Over the last six years my partner and I travelled extensively in Australia in our campervan and have also been able to do a fair bit of overseas travel – New Zealand, Fiji, Japan, China, Thailand, Laos, Cambodia, Danube River Cruise from Bulgaria to Vienna, trips to Italy, Spain, Vietnam, a Baltic Sea Cruise and South America and a Galapagos Islands cruise.  This is despite having 4 Coronary artery bypass grafts, a Hip Replacement and a Parotidectomy as well as the Prostate Cancer in the period from 2003 – 2007.  The parotidectomy has left me quite deaf in my left ear and minus two molars in the bottom left jaw.


(A parotidectomy is the surgical excision (removal) of the parotid gland, the major and largest of the salivary glands.)


Metastatic Prostate Cancer

After several years on androgen deprivation therapy (ADT), my prostate cancer started to progress, despite low testosterone levels in the body.  The cancer had failed ADT (this is sometimes called castrate-resistant prostate cancer).  In 2009 I was diagnosed with Metastatic Prostate Cancer.


Bone scans, X-rays, CT and MRI scans were used to locate and confirm metastases.


Symptoms experienced at this stage included rapid increase in PSA (7,15, 22, 28, 36, 56,47,53,97 then 180), bone pain, tiredness/fatigue and urinary symptoms which were relieved initially by self cathetering and later with a TURP (trans-urethral resection of the prostate in mid 2009).

At this stage my anxiety level had risen somewhat and I was not too sure where all this was going.  During my stay in hospital my urologist appeared at my bedside one morning to check on my progress with the registrar and some interns.  I asked him “where do I go from here’’?   His response was “Come and see me in my rooms”.  Point two against him!


I decided I needed an Urologist that was more sensitive to my situation and my reactions.


After a bit of a run around I was able to get a new urologist with the assistance of my GP.  Not an easy process!


Prostate cancer is called metastatic when groups of cancer cells have left the prostate region and started to grow in other parts of the body. These deposits are called metastases. Metastatic prostate cancer cannot be cured at this stage but can be treated to slow the growth of the cancer. The most common site of metastases is in the bone.


In 2013 bone pain which is a common sign of metastases was experienced in the lower back, hips and thighs. This was treated with another 10 day session of radiotherapy in August 2014.


Painkillers – Endone, Oxycontin and Cortisone were prescribed to handle the pain in lower back and legs after the Radiation Therapy.  Withdrawal symptoms were significant (my doctor forecast that I would feel like shit! - He was spot on).


At this time I was not feeling confident with my medical oncologist who seemed very off handed and dismissive.  This oncologist was unconcerned that I had been kept waiting for nearly an hour and a half for an appointment that I had already agreed to move from 1.30pm to 2.30pm.  On a previous appointment which lasted less than ten minutes the oncologist indicated that I should purchase some vitamin D tablets from Coles or Woolworths so that I could ensure that levels vitamin D could be maintained.  The visit cost $175 – expensive vitamin tablets!


The oncologist asked why I had changed my hormone medication from Androcur to Anandron.  When I replied that my Radiation Oncologist had advised this and provided a script for Anandron, the medical oncologist then stated that if I was going to take advice from other people there wasn’t much point in me seeing him.


I agreed and pointed out that I was very unimpressed with the waiting time and the “cost” of vitamin D.  We parted company.  My Radiation Oncologist suggested another Medical Oncologist!


Following radiation therapy to the affected lower back area, a bone-targeting drug called Denosumab (a Bisphosphonate) was prescribed in late 2014 to relieve pain and slow the progress of the cancer.


A dental check-up and some dental work was necessary before this treatment could be started as a precaution against necrosis of the jawbone.  Vitamin D and Calcium levels are being maintained during this treatment also to minimise the potential side effects of Denosumab.


During 2014 my treatment comprised Denosumab injections every four weeks for up to twelve months, PSA test every four weeks, periodic dental hygiene checks, Zolodex Injection every three months and periodic CT Scans and MRI.


I had not been not exercising enough.  I needed to take care of this by utilising a makeshift home gym – bike on rollers, rowing machine and a step-up stool.  I spend time on this set-up each day.


PSA had risen from 35 to 59 to 97 to 150.


After experiencing pain in my lower leg and in my chest, I was sent for a CT scan by my medical oncologist in late December 2014.

Results indicated activity in my femur and sternum and I then undertook a further ten sessions of Radiation Therapy in mid-January 2015. I had some reaction - pain and burning which were handled with Painkillers (Oxycontin and Endone) and Paw Paw ointment. The painkillers created a significant round of constipation requiring Prunes and Movicol.


In mid – February, following another “medical week” of CT Scan, Ultra sound and PSA Test, I commenced Enzalutamide (Xtandi) treatment.. There are some fairly daunting possible side effects associated with this treatment as there are with other treatments.  I have previously been fortunate not to have experienced the more extreme side effects of treatments and so far this situation hasn’t changed with the new treatments.


After the radiation therapy in January this year I went off my food and lost interest in cooking.  I had also lost 10 kgs in weight which I haven’t regained since, despite still eating regularly and well.  I still cook but have become a little less adventurous or imaginative.  I have also given up drinking wine as it was making me drowsy and giving me headache even on one or two glasses – mostly one glass! I think this was the Oxycontin.


PSA was now skipping between 160 and 180.


My ongoing treatment currently comprises Zolodex Injection (3 monthly), PSA Test (monthly), Denosumab (XGEVA) injection (monthly) and Enzalutamide (XTANDI) Tablets (4 per day) and also periodic CT or MRI Scans.


Several of the options now available were not available in 2003!


I was still not doing enough exercise and am trying to increase this.  I am still able to do household and gardening chores, build and sail radio control yachts and do voluntary teaching for speakers of other languages one day a week at Wyong TAFE.  We have plans for some short trips of a week or so not far from home but due to new treatments and possible further advance of the cancer, overseas travel is no longer possible even though we went to the Solomon Islands for a short break recently.


While I can still do basically what I want to I think I have slowed down a fair bit.


Due to movement difficulty with my left leg I had CT and MRI scans in April which revealed Cancer activity in my lower back. This was squeezing the sciatic nerve and causing the problem with movement of my leg.  PSA at this stage had fallen to150 but then returned to 160.


In June 2015, I underwent another ten sessions of radiation therapy which finished in mid-July. I did not experience any significant side effects and after five weeks I was feeling good.


The staff at CCROI produced a certificate and a red balloon at the completion of the radiation both of which were suitably inscribed with congratulatory messages of reaching a century of treatments.  At this stage my Radiation Oncologist indicated that my next option would be Chemo Therapy.

I have regained full movement of my left leg and PSA dropped to 120 (something is working – either the medication or a temporary side effect from the radiation) but I still have some lower back pain as well as significant pain in my groin area.


I had a Bone Scan before my visit to my Medical Oncologist at the end of August, 2015.  This indicated that cancer was spreading albeit slowly but did not indicate to what extent.  I subsequently had CT scan for further clarification which showed cancer activity in recently radiated areas in my lower back as well as having spread to other areas in my body including the skull and lymph nodes.  This is to be expected to some extent but the fact that I had been on Denosumab for eight months and Enzalutamide for ten months without any significant reduction in PSA or slowing the spread of the cancer, caused some concern.  I was also experiencing episodes of fairly significant pain in my lower back and groin.


At this stage PSA was hovering around 140, 160, and 140.


Despite all this I was still able to spend a very relaxing and enjoyable week in the Solomon Islands with my partner.


There may be options with other drugs e.g. – Abiraterone (Zytiga).  Abiraterone is not available on the Pharmaceutical Benefits Scheme (PBS) if you have already received Enzalutamide on the PBS.  I think it is rather cynical that I can’t have Abiraterone when it seems that Denosumab and Enzalutamide have not produced a more significant outcome for me – there is a possible argument that these two treatments have failed and I should therefore be entitled to get Abiraterone under PBS. I think there is some lobbying by oncologists to make this possible.


[Edit. Your JimJimJimJim Committee is also lobbying on this.]


Drugs undergoing trial may also be an option.  In the meantime I am managing pain with Panadol Osteo, Oxycontin and Pregabalen (and occasionally Endone).  Pregabalin (Lyrica) is a treatment option to relieve pain by desensitizing nerves to reduce pain and improve quality of sleep.  Endone is causes severe constipation and associated pain on top of the extreme pain in my lower back and groin.


A visit to my medical oncologist in early October addressed the issue of pain management and extreme constipation. Recommended pain management comprised Oxycontin 10 mg accompanied by two Coloxyl Senna tabs morning and evening.  This combination has worked and has been augmented with Panadol Osteo for pain in the early morning hours when necessary.


PSA at this stage had dropped to 130 (Good News?)


A visit to my radiation oncologist in November 2015 indicated that further radiation was not an option due to the risk of affecting bone marrow and additional pain management options were suggested if it became necessary.


A visit to my Medical Oncologist in Mid November 2015 confirmed this and while Chemotherapy is available as an option it is not considered to yet be a treatment in my situation.  PSA was back up to 150.  While this is moving around a bit and not having as significant an effect as expected under Denosumab and Xtandi, there is a possible likelihood that PSA could be much higher without these treatments.


In late November 2015 I became aware of a rash on my backside which my GP diagnosed as Shingles – just what I needed.  Apparently Shingles can occur when the body is under stress. I considered that my body had been under significant stress over the previous twelve months or so.  There is no fast fix for shingles and it was necessary to let it take its course. Fortunately the medications I was on reduced the pain from the Shingles quite a bit (particularly Lyrica).  So I resigned myself to “Shingle Bells, Shingle Bells, Shingle all the way”.  Fortunately the drug prescribed Famvir, stopped shingles in its tracks because it was able to be treated within 36 hours!


My ongoing pain management regime which will be monitored by my GP each month in conjunction with any recommendations from my Medical Oncologist, comprises 15mg Oxycontin, 25mg Lyrica, and, when required, Panadol Osteo or Endone.  This medication sometimes causes episodes of constipation which is treated with Coloxyl and Movicol which sometimes creates a “game” of ping pong between constipation and diarrhoea.


My December visit to my medical oncologist confirmed that I was running out of options and that should accept that chemo was the only option left for me.  This presents me with another challenge I guess as I really don’t know a lot about chemo except that it has some very daunting side effects and van in most cases only extend survival by a few months or so.


The importance of having medical practitioners that you are comfortable with cannot be emphasised enough.  You need to have confidence in your Practitioner – GP, Urologist, Radiation Oncologist, Medical Oncologist and Cancer Care Nurses and be able to communicate openly and frankly with them.   I am very comfortable and satisfied with the people currently treating me - a situation achieved by changing two practitioners because I was not comfortable with them and was unable to achieve an acceptable level of confidence or communication with them.


There are also highly skilled and very approachable specialist nurse resources available within my local Prostate Cancer Support Group. I have attempted to become more actively involved in the support group over the last twelve months.


I have found clear and easily understandable information about all aspects of Prostate Cancer on the PCFA, Cancer Council or Andrology Australia websites on the internet.  Astra Zeneca (Zolodex manufacturer) also provides an excellent journal called Frank which is particularly relevant and useful for men with advanced prostate cancer who are taking Zolodex.


Having been diagnosed in 2003 with Prostate Cancer, I have for the most part lived a fairly normal life.  While the cancer is an insidious thing, it has moved very slowly with the treatment I have had has enabled me to do a lot of travel, meet some new interesting people and even discover new things to do.  In hindsight I can say I probably wouldn’t have done a lot of what I have without acknowledging the need to keep my mind and body active.


Four and a half years ago a medical practitioner told me I had eighteen months to two years to live!


Apart from the discipline imposed by my medication regimen, my quality of life is really quite good and I am still mostly able to do the things I want and need to do from day to day.


However at this stage of my cancer I do feel quite isolated and I am anxious to know how I manage my condition as it progresses further.  I need to know more about chemo treatment and how long one can manage pain before taking on chemo which seems that it might be quite debilitating and erode the quality of life that I currently have.


On 21st December I discovered JimJimJimJim and have established that this is the place for me at this stage of my journey. I have joined and already spoke with Jim and David – a very worthwhile and helpful phone conversation!

Link to comment
Share on other sites

Hello JohnC,


If you can't get access to Zytiga on the PBS, has there been any discussion regarding substituting with High Dose Ketoconazole (HDK) accompanied by either hydrocortisone or better, if available, triamcinolone?  Zytiga is more or less an advanced form of providing the same treatment as HDK.  Ketoconazole acts similarly to Zytiga, but the difference is that ketoconazole, like Zytiga/abiraterone acetate, binds to CYP-17 enzymes to shut down testosterone production by the testicular and adrenal gland routes, but can become “unbound” and thus lose its effectiveness.   


On the other hand, Zytiga, once binding to these enzymes, remains bound and maintains its effectiveness much longer.   Zytiga could be considered a CYP-17 inhibiting super drug since it blocks testosterone production from all three testosterone sources, testicular, adrenal glands, AND testosterone that cancer cells can produce within themselves.


[Edit.  Ketoconazole has been deregistered and discontinued in Australia from 1 December 2013.  This follows the European Medicines Agency recommendation in July 2013 to suspend ketoconazole in Europe.]



Another consideration is being prescribed the 5Alpha Reductase (5AR) inhibitor dutasteride/Avodart that prevents testosterone/androgen from coming in contact with 5AR isoenzymes wherein should that occur, the testosterone converts to the 5 to 10 times more powerful stimulant to PC cell growth, dihydrotestosterone/DHT.  If you insurance does not cover this medication if can be purchased from www.alldaychemist.com at a much more reasonable cost that locally and from all the men I am aware purchase from this source, it has the same effectiveness as the name brand Avodart.


[Edit. Branded Avodart can purchased at Australian pharmacies at a similar or cheaper price to generic dutasteride purchased online from overseas pharmacies.]


Wishing you well.  Please visit my website www.theprostateadvocate.com, take particular note of the "Observations" webpage where over 200 papers regarding most aspects of prostate cancer are available to everyone, and please email me at maack1@cox.net should you have other questions/concerns.  I am "Always as close as the other end of your computer to help address any Prostate Cancer concerns."

Link to comment
Share on other sites



Neither Xtandi (Enzalutamide) or Zytiga (Abiraterone) are available in Australia before chemo - subsidised by the Pharmaceutical Benefits Scheme (PBS). [Edit - Patients can get Xtandi (Enzalutamide) or Zytiga (Abiraterone) on the PBS pre-chemo if they are unsuitable for docetaxel treatment on the basis of predicted intolerance to docetaxel.]


They are available before chemo if you pay full price or are on a clinical trial or in some instances where doctors organise compassionate access.


Both drugs are available after chemo (subsidised by PBS) but you have to choose one of them only at that time.


Given the great variability in efficacy from patient to patient for these drugs this choice is like Russian Roulette. It is a stupid rule and we are campaigning to get it changed.


Given you have had access to Xtandi before chemo (by whatever means) can I suggest you discuss with your oncologist whether there is any pathway for access to Zytiga after chemo subsidised by PBS.

I dont know the result of this but think it worth asking (unless you have already done so)


Regards             Tony Maxwell

Link to comment
Share on other sites

Hi John C


Have been metastatic for 10 years now and PSA is 3.1 after a year on Chemotherapy -Taxotere -most guys worry about going on Chemotherapy but has dropped my PSA from 35 in March to 3.1 now -however there are side effects mainly fatigue -however I still managed to play regular golf during the year and also maintained an exercise program of yoga and pilates -I am having a 2 months break from chemo as I am overseas in Thailand so not sure what will happen in 2016 -however my next option is Cabazataxel followed by Zytiga or Xtandi -all on PBS after Taxotere


Was interested in seeing Chucks post about Ketokonanzole -my Oncologist was interested in this product but it is now longeravailable in Australia but it is in Thailand -so this is an option for me if I elect to take Xtandi and it fails and I cannot access Zytiga via PBS


Good luck -happy to talk to you when I am back in Australia




Link to comment
Share on other sites

john C,

Welcome to the Group.

My message is simple: not every person is unduly bothered by chemotherapy.

You could be a lucky one and some responses are very satisfactory.

it is a case of "the proof of the pudding is in the eating".

Best wishes,


Link to comment
Share on other sites


This topic is now archived and is closed to further replies.

  • Create New...