At my wife's insistence, I went to the doctor for a general check up, having not done so for several years. I was concerned a little by the possibility of High Blood Pressure but otherwise was in good health. I was getting up during the night but put this down to getting older.
The doctor did all the usual checks and when I returned for the results explained that my PSA was at 21ng/ml and this was high. He explained that this could be for a number of reasons and prescribed an antibiotic which would cure any infection. He made an appointment with a urologist but as it was Christmas this did not take place till February 2004. In the meantime I had completed my medication and another PSA test.
At the urologist's appointment I learned that the PSA had risen to 27 ng/ml. The urologist recommended a biopsy, then went away for a fortnight before doing it. The biopsy revealed the Gleason Score of 9 and the staging of T2c [although I have since been given letters which suggested that it could well have been as high as T3a] He explained the surgery option but recommended that I talk with a radiation oncologist. My own research suggested that the Brachytherapy option seemed the best and this was reinforced by my discussions with the doctor.
He recommended that I have a Laproscopic check of the lymph nodes [yet another doctor] which came back negative. At the same time I started on a course of Luprin Depot and Androcur to shrink the prostate. The double whammy made me tired but this seemed to improve after the two months of Androcur finished and I was only on Luprin. A further test indicated that my PSA was back to 2.2 ng/ml.
After three months the PSA was below 2.0 ng/ml and I started my external beam radiotherapy course [23 doses] which I have now completed. This had the effect of changing my urination processes, more often, not being able to clear my bladder fully and need to urinate quickly at times. I also experienced a week of significant pain in my rectum but this has subsided now that I have completed the course. My libido has not gone completely but has been very significantly downgraded.
This week I will undertake the HD Brachytherapy and the doctors have been discussing the continuation of the Hormone treatment for up to a year after the procedure is completed. My wife and I are still coming to terms with this but while the data is not yet there as to its benefit, we believe that we should take every opportunity to ensure that we have a long and enjoyable life together.
Our biggest frustration was the time it took from the initial confirming diagnosis in February until something actually happened to start treatment. The time taken to move from one doctor to another to another, often in the same consulting rooms frustrated us no end. However, once things got underway, the support of the clinic staff and the doctors has been enormous and that has given us great confidence for the future.
I undertook the HDBR (High Dosage Brachytherapy). The 36 hours in which the rods were left in was definitely the most uncomfortable period of my life. It was more the fact that I had to lie on my side and could not roll over by myself which bugged me rather than the rods themselves, although I was warned what would happen if I did roll on them.
The actual radioterapy was painless, just a series of clicks from a machine that I was hooked up to. It was wonderful to get them removed at the end of the time. I was put on FLOMAX and had some minor discomfort with both urine flow and with my bowels, but this generally faded after a couple of months. However, about three months after the end of the radiation treatment I had a urethral blockage which was a bit scary. A visit to the hospital, and a cystoscopy seemed to solve the problem but I too learned how to self catheterize in case there was a recurrence. We were doing a six day wilderness walk over the New Year period and I didn't want to get stuck miles from nowhere and not being able to cure the problem.
While I had no problem on the trip, in February of this year, I started to get blockages again. They became more frequent until by the end of March, I was having to catheterize about 4-5 times a day. The urologist said I was an enigma as I was the only case out of the 204 brachytherapy patients he had. I spent a couple of half days in hospital about a month apart, while he passed SOUNDS [metal rods]through my urethra and I started self catheterization twice daily. Everything has improved and I now only have to do it once a day. This will get extended to every second day etc. until hopefully I don't need to do it at all. It is not a big drama and we have managed a five week trip to Ireland and a week in Japan without any trouble.
I have changed my lifestyle a bit, and probably should work harder at it. We eat less red meat, more soy products and start each day with fresh juice which includes carrots, beetroot, ginger, grapes or red berries etc. I started doing more exercise and try to keep this up. It was easy when I wasn't working but as I have been back full time this year, it is a bit harder to squeeze the exercise in. [I know I should be better organized] I am making sure that I enjoy life as much as possible and focus on being positive and hope that next year will bring positive results. The hormone treatment does make me tired but I have been lucky and have had minimal side effects other then that. My urologist is very positive and believes [I think] that there is a good chance of me being healthy in five years time. Only time will tell.
My PSA is still low (0.50 ng/ml) . I still have the occasional blockage but can treat it easily with catheters when it happens. My libido has returned and while there is no semen emission, I am still able to move to orgasms. I am not sure but feel that the blockages are linked to this. I will keep exploring this but as time goes by. I make a fruit juice drink most mornings which consists of ginger, grapes, beetroot, carrot, kiwi fruit, celery and apple and add a dose of Dr Red Prostate formula giner punch. Whether this in fact has any influence I do not know, but will continue to do this for the future. I am only seeing the urologist every eight months and having PSA tests every 4 months. My health is good and as I have just retired, I am looking forward to enjoying life.
Over the past year my PSA has risen marginally and my urologist expects that it will undulate and settle between 0.20 ng/ml and 0.50 ng/mland may even come down a bit in the long term.The urinary blockages which I have been experiencing have become significantly fewer and I have not had to catheterise myself since July although my flow rate is now much reduced and frequency up [particularly during mornings] which is quite frustrating. I can often go for longer periods if I am seated or lying down but the desire to pee quickly occurs when I get up. Dr Yaxley suggests that I return to catheterising and do it once every month or so just to keep everything open.
My PSA tests will now only occur every six months [up from 3 months] and my specialist visits are now annual.
Over the past twelve months my PSA has been creeping up just a little. I have been having 6 monthly checks. When I saw the urologist in November 2008, he showed just a little concern and arranged for my PSA tests to be done 4 monthly over the next twelve months. I am to see him again in Novmeber 2009 unless my PSA goes above 2 before then. I am not currently worried as he originally said that my PSA would float somewhere between O.5 and 1 and it is still well within this range.
I still develop urinary constrictions which dramatically reduce flow every six-eight weeks but this is cured easily with a dilator which opens the valve at the bottom of the prostate. [I think] Everything returns to normal within a day or two after I do this.
Otherwise I feel healthy, ride walk and sail without any impediment and I am able to enjoy sexual relations.
When I last updated my profile my PSA had just started to rise and it continued to do so during early 2009. My urologist had indicated that I should come back and see him if it went above 2.0 but when it went to 1.85 and we were planning to go overseas for a month and then sailing for three months, I decided not to wait for the inevitable and contacted him.
He arranged a bone scan prior to my visit and it showed metasteses in my pelvis and on a couple of ribs. [I still haven't managed to see the x-rays which showed this as they have become lost in the system somewhere]. During the visit he advised my wife and I that I had reached the incurable stage and that I could expect to survive for somewhere between four and ten years.
He talked me through the process of treatment and placed me on a maximum regime of Zolacos [a combination of a three month injection of Zoladex and a daily Cosudex [aka Casodex 50 mg] tablet] He also recommended that I see an oncologist and begin to take Zometa which would help maintain my bone structure and may perhaps slow down the cancer growth.
Prior to commencing this I needed to visit my dentist and ensure that I did not need dental surgery as a side effect of Zometa can be a particularly horrific disfigurement due to the Zometa reacting with the jaw where the tooth is removed.
My PSA is currently back to 0.06 so something is working. How long it will stay there is anyone's guess at the moment. My family are very supportive and one of my daughters found the book "Anti-Cancer: A New Way of Life" by Dr David Servan-Schreiber which made a lot of sense to us all and also the approval of her doctor husband. We have worked at trying to carry out the recommend-ations, not always successfully, but always with a strong intent.
I have cut out most of my sugar intake, reduced as much as possible white flour; minimised regular dairy products; increased my intake of fish; vegetables and legumes taken up soy milk; green tea, turmeric; flaxseed and organic products. We use agave nectar and zylotol as sweeteners when necessary. We have now found a cookbook which accompanies the orginal book and are enjoying cooking from this and other healthy food books regularly. It is amazing how much many great meals can be made using healthy ingredients. I have managed to lose over 10 kg in weight and am maintaining a far greater exercise regime than I used to. I am hoping to develop some skill in meditation as the third prong in my complementary medicine in the hope that I can stretch the doctor's prognosis as far as I can into the future.
While I am not looking for any miracle cure; I believe that being positive and enjoying life will assist in extending the years which I have left. It isn't always easy to do this, but with suportive friends and a wonderful family my life is made richer every day. Last year we managed to go sailing up the Queensland coast for three months and are hoping to repeat the adventure this year. [We just have to fit in with the injections and tests]. We will also be travelling and enjoying our ever increasing brood of grandchildren. It is difficult when the timelines are unclear and you aren't sure whether an ache you feel is just the same old backache you have had for thirty years or a sign that the cancer is burrowing away somehwere in your spine. It would be nice sometimes to know what the changes are that you can expect and when they are likely to happen but no one is able to tell you that and life is never about certainties. As one doctor said, "You could be run over by a bus tomorrow". Somehow that is a litle different.
I am definitely enjoying each day as much as I can, planning for a significant future and looking forward to watching my granchildren grow up for some years to come, but if that is not what fate has in store for me, then I am not sitting around waiting for something to happen; not as yet anyway.
Another twelve months have passed and I am well into the monthly visit to the day hospital for the Zometa infusion. Luckily, I am not afflicted with any of the side effects which others get so my life goes on normally.
My PSA started to go up mid 2010 (to about 3 +) and as a result my oncologist suggested that I cease taking the Cosudex [aka Casodex] tablets as in about 30% of cases, the two different hormones (Goserelin and Bicalutamide) react with each other and feed the cancer. I stopped and my PSA dropped back to sit between 0.5 and 1.0 (This obviously put me in the 30%). My bone scans at the end of 2010 indicated that there had been little change from those taken 18 months earlier. At the moment things are travelling well. I still try to follow a diet with little sugar or fat, and only a glass of red wine. I still have a teaspoon of turmeric/pepper each day and chia seeds on my breakfast. We make our own juice with beetroot, red grapes, carrots, celery, kiwifruit, apples and ginger. (This actually tastes good and hopefully adds to the antibodies). I got a bit lost over Christmas and put some weight on but now am back to the old diet again. I tried meditating but got lost in finding the time but am going to have another go. We walk most days and ride our bikes when the weather cools off.
I get the odd ache and pain now and then but I put them down more to old problems and arthritis rather than any cancer related issues. No one has suggested otherwise. Other than that I remain healthy and last year managed to sail our 12 metre yacht for three months; doing all the winching and deck work; and last week managed to climb to the top of the mast to undertake a repair to an aerial. (We won't talk about the aching muscles the next day) [Seems Gordon has not forgotten the Laws of Gravity. This forgetfulness is said to be a major cause of accidental injury in men as they age.] Later this month Jan and I are travelling to Canada for a two month visit and later in the year hope to have at least another month of the yacht.
There are two more grandchildren on the way which will bring the total to seven and there is a great affinity between all the young ones and their grandpa. I know that things will change in the future sometime, but while things are going well, that future is a lifetime away and that means that I can remain positive and work at ensuring that I am doing the best for our family, friends and the wider community.
Things have certainly changed since last year. PSA started to go up again towards the end of the year [7 - 8 -11] and I started to participate in the Prevail MDV3100 trial. the PSA did hold for a month then jumped to 13 and then to 16.Oncologist suggested that while the trial drug seemed to have some impact, it was not working well enough so he started me on Nizoral [Ketaconozole] and Cortisol. The last scan suggested that everything was stable and that a couple of lymph nodes had reduced in size. PSA is now down to 8.4.
I am still on the trial so my daily pill regime and the things you cannot do after each type certainly complexify my day. I take the Nizoral and Cortisol in the morning after breakfast but then cannot have dairy products for two hours [There goes the flat white - now using soy milk] The MDV capsules [and there are 4 daily] require no food for two hours before or an hour after and there goes the afternoon. Nizoral and Cortisol after tea so no dairy for two hours again. And there is always the three monthly dose of Zoladex and the monthly infusion of Zometa.
My only side effects seem to be a feeling of tiredness but that doesn't stop me enjoying life and the seven grandchildren. We are off to Europe for 2 months next week and then hopefully there will be sometime in between scans and zomneta visits to go sailing for a month or so.
I have recently undertaken the Mindfulness Course run by the Counselling are of the Queensland Cancer Council. It is an 8 week course [about 2 hours each week] in meditation and focusing on the present and was really worthwhile to both my wife and I. We could recommend it to anyone.
I guess we will see what happens as the year progresses. I hope that the current regime continues to produce good results for a while yet and I am certainly enjoying life with family and friends, focusing on the present and making the most of each day.
Since my last update things have moved forward quite rapidly. In October last year the PSA started to climb as did other signs so my oncologist removed me from the trial of MDV3100 and the Ketaconazole and started me on a course of Taxotere [Chemotherapy]. Despite all the worries I was lucky with side effects. Some of my hair fell out but I was still able to brush what was left every day. Eventually my wife got out my mother's old clippers and tidied everything up so the long hairs didn't make me look like some mad professor. I certainly got hyped up with the Dexamethazone which I had to take around each chemo dose and found sleeping difficult during thast period. There was also some fatigue at other times. I had some problems with my sense of taste for a couple of weeks after each chemo dose but wa stuill able to do everything I normally did and a bit more as we had my wife's sixtieth birthday party to organise as well as trips to Vanuatu; the Australian Open in Melbourne and the Clare Valley in South Australia. I had very little pain whichI was able to control with a continuing regime of Panadol Osteo [which provided a slow release dose of paracetamol].
Once the chemo was finished I went back to just have my monthly infusion of Zometa and 3 monthly Zoladex. Now we wait to see how long things stay stable. My PSA started to climb; went back to 25 and then stabilised at 31 which it was at my last check. Once things start to go up again, it will be more chemo or Zytiga[abiraterone] if it gets approved by the government in time. This could happen at any time over the next 12 to 18 months, although knowing my bosy's ability to overcome any treatments which are thrown at it, it probably won't be at the latter end of the time scale. Other than a few aches and pains in my ribs, lower back and hips. When things get a bit too rough I take an Endone tablet which settles things down.
In the meantime, we are continuing to enjoy life and have trips planned to South Australia and Asia and perhaps some sailing after that. Life has been complicated a little by the train set which I was given for Christmas by my children which the grandchildren [oldest being 7 years old] keep suggesting improvements for and then are very disappointed the next time they visit if their suggestions haven't been put in place. I guess the message is that life must go on and that living with cancer doesn't mean not living. Cancer sometimes provides that little extra incentive to do the things you want to do but never got around to. I am sure that I will have done masses of things which I would never have got around to, had I not been told that PCA was going to be part of the rest of my life. We were also honoured in the last few months to be asked by Suzanne Chambers for some comments which she included in her book Facing the Tiger which is a great support for those starting out on the PCA journey.
This year marks the end of my ten years since the original diagnosis and the beginning of the 4 to 10 years which my urologist gave me in 2009 when the cancer recurred. I am hopeful that I will still be around in 6 years time to celebrate.
[Sadly, we received word from Jan that Gordon lost his battle with Prostate Cancer in late May of 2014. She expressed her appreciation for this site and the assistance that it provides to other men.]