Prostate cancer journey

Okay, for those of you that may not realise I work for a wonderful profit for purpose organisation called The Hospital Research Foundation Group @The Hospital Research Foundation. Our vision is better health and wellbeing for all. Apart from the obvious of funding research and patient care activities into hospitals, research institutes and universities we also deliver health care activities through many of the affiliates in our charitable group. If you want to know more about the THRF Group it would be worth reviewing how peoples support funds a vast and impactful array of health and wellbeing activities at www.hospitalresearch.org.au .

As part of our contribution to community health we are focussed also on improving what people know about health care and how to access health care. This is called ‘Health Literacy’. Our belief is that it is better for all if health care is part of the broader community discussion and people are informed about their health care choices and pathways available. This also extends to helping talk to people about health living choices and activities.

My Prostate Cancer Journey

I have Prostate Cancer. I have known this diagnosis for approximately 18 months. I committed to myself that I would be very open about my journey, in addition to the medicos I have consulted, I started talking with people about my diagnosis. From that I have had so many men and women ring me or come and chat to me about their or their partner’s journey. I was so surprised at the variety of peoples stories. Some were quite open about it, some very private about it. It surprised me that given the narrative that has evolved about men’s health and women’s reproductive health and breast cancer treatment over the past 40 years that the opportunity for broadening the narrative about individual health journeys has not grown. Organisations such as the Hospital Research Foundation Group have a responsibility to open and narrate these discussions so that the broader health literacy level increases in our society. Our affiliate partner Australian Prostate Cancer Society Ltd (APC www.australianprostatecancer.org.au ) has a focus of this increased narrated discussion about prostate cancer journeys and treatments as well as funding research and patient registries to support enhancement of curative outcomes. Obviously with the passing of my late brother and my subsequent diagnosis and the journey of quite a few of my friends and colleagues, I am committed to use my journey to shed a little further light on this area.

Some of you know my older brother Seamus passed away because of metastatic Prostate Cancer not that long ago. He died way too young and left behind a loving family and extended family. Anything that I can contribute from my journey to other people’s experiences will therefore be a great relief to me.

Metastatic simply means that the cancer transferred from his prostate into other parts of his body. Unfortunately for our Seamus and our family, his diagnosis and henceforth his treatment was probably too late and the ‘gold standard’ treatments didn’t work for him. His passage from initial diagnosis, failed treatments and palliative care and eventual death was short and clearly traumatic for someone who was only mid 60’s. Our family was together when he passed and his time in palliative care was in one sense traumatic and another sense quite beautiful, but his passing was to abrupt and he was too young.

My diagnosis

In 2020, as a result of a doctors visit where I thought I had a bladder infection, my GP suggested that I consult a urologist. Luckily because of the work THRFG funds, I was aware of the fact we have many very good specialists in South Australia and so off I went to South Tce Urologist’s. I didn’t have any of the classic signs of any prostate problems. Whilst I did in fact have a urinary tract infection which was treated with antibiotics. But I had no problem urinating, my PSA (Prostate Specific Antibody) count was normal for my age, but because of family history my urologist suggested an MRI which eventually showed a very small spot in my prostate gland that required further investigation. So off I went to have a biopsy on my Prostate which entailed a general anaesthetic and a small incision between my scrotum and my bum where 36 biopsy needles (one at a time) took micro specimens from various parts of my prostate.?It was day surgery; I was in and out in 4 hours and rested at home for the next 36 hours. It was a bit sore, and my scrotum was black and blue from some minor internal bleeding for a few days. There were some embarrassing effects on the colour of your semen for about a month or so, but within six weeks completely back to normal function.

Back to the urologist a week later for the results: I had early-stage Prostate cancer with a Gleason Score (which is a rating the medicos use to measure the advancement of Prostate Cancer and the likelihood that the cancer could cause you problems) was 3 +3 = 6. This was considered unlikely in the short term to cause me any metastatic problems and I was given well explained options of:

1)?????Wait and monitor 3 monthly.

2)?????Radical prostatectomy (Surgery to remove the Prostate)

3)?????Radiation Therapy of the prostate.

4)?????Hormone therapy if necessary.

The urologist explained the various options to me with lots of good information but strongly suggested that it would be totally resonable for me to wait and monitor because the type of PC that I had was quite indolent (lazy) at this stage. The research data that I had available to me through work also supported the urologist’s recommendation as did my discussions with a couple of other urologists that I know. My urologist did give me all options though, well explained and it was totally my choice.

Moving on 15 months with monitoring every 3 months, my urologist suggested another MRI ot of a conservative view that given my numbers were low in any case maybe my PSA wasn’t telling the full story, which showed the tumour that he was monitoring closely (more about this shortly) had grown a little and he wanted to do another prostate Biopsy. So, a few of months ago I had another 36 needles in the nether regions under general anaesthetic (same post operative issues, sore for a couple of days more bloody semen) and the results came back that my Gleason score was 3+4=7. This means the tumour they were actively monitoring had advanced to ‘intermediate risk’ but the other tumours were unlikely to cause me any problems. This was the first time I had focussed on the word ‘other’ tumours. Whilst I could then recall I had heard previously that there were several tumours, to be honest I only really focussed on the scores of the one they thought likely to advance. As it turns out the likelihood of men in middle age having tumours in their prostate is quite significant, but in 80% of cases at age 50 they are unlikely to cause people problems. This percentage of potential to cause problems increases with age so gentlemen readers it is worth getting friendly with your GP on at least an annual basis. Preferably a GP with small delicate fingers.

Now, with a Gleason score of 3+4=7 and my PC now intermediate risk I still had choices, I could:

1)?????Wait and monitor for a further 6 months (not really recommended by my urologist but still and option).

2)?????Commence hormone therapy to slow down the growth of the tumour and then wait and monitor whilst I think about long terms treatments;

3)?????Investigate radiation therapy; or

4)?????Investigate surgery.

I had done quite a lot of research knowing what the options were and decided on the spot that I would opt for surgery (radical prostatectomy) using robotic ‘Davinci’ machine. My Urologist started planning for my surgery but gave me more than enough time to go away and think more about it. I thought I had done enough research on the options and my thinking was that by opting for surgery I was choosing the option that gave me the best chance of a long and prostate cancer free next 15 to 20 years. The research of prostate cancer survivorship only realistically goes out to a max of 20 years, with confidence levels most significant at 5 and 10 years. To be honest, because of the age of most men at diagnosis, any further out that 10 years and there a lot of other considerations that make longitudinal research a bit less reliable (albeit still very informative and important).

Over the next few weeks, I took the opportunity to talk to two Radiation Oncologists that I had been introduced to who I trusted. They indicated to me that there was more contemporary research available to look at which focussed on comparison between the various types of radiation oncology available and surgery as far as long-term curative outcomes. I learned that the curative outcomes from various treatment options do really depend on a lot of different but very individual inputs such as your Gleason score, where the tumours are in your prostate and other general health considerations such as whether you are experiencing and prostate specific bladder problems and what your psychological state of mind is about the various potential side effects of each of the treatment options (potential for incontinence, impotence etc).

So after further consideration, discussion with many people who came out of the woodwork to tell me about their journey with treatment of PC I changed my mind and decided to embrace the radiation oncology pathway.

On Friday 6th May 2022 I had another day surgery to insert some ‘fiducial gold seed markers’ into my prostate to improve the accuracy of the radiation oncology treatment. This was guided by trans rectal ultrasound (up my bum) to make sure the seeds went into the right place in my Prostate. My urologist (with my radiation oncologist who dropped by to have a look at the surgery) also inserted some SpaceOar hydrogel into the gap between my Prostate and other close organs to provide further protection against any impact of the radiation on my bladder etc. This hydrogel dissolves after about 3 months harmlessly into the body.

Next week I will have a CT scan and an MRI to allow the specialists to calculate the projected dosage measures of therapy (Gy fractions I believe they are called). SBRT is approximately 5 sessions of high intensity external beam therapy, highly targeted. The location of the beam is linked to the location of the gold seeds and is dynamically linked to that any movement of the seeds immediately stops the beam.

In preparation for the scans and the beam therapy your bowel must be clear (so a self applied enema (Microlax)) and bladder holding approximately 200mls of water so that each session (including the CT and MRI) has the same local area size and circumstance. My scans are this week with radiation therapy to follow withing a week or so, SBRT over 5 sessions a couple of days apart at the Royal Adelaide Hospital.

Both my urologist and my radiation oncologist have both spoken to me about my weight and the impact that obesity has on prevention and cure from all types of cancer. My radiation Oncologist, has offered/forced me to join him in a new trial of health and wellbeing that is being conducted in South Australia which I will willingly do.

So, onto the next phase and I will keep you posted!