Prostate Cancer: My Journey
Localised, low-risk prostate cancer is not a death sentence, if caught early. Making the decision around treatment is scary, difficult, anxiety-provoking and the solution is not always clear-cut and final. This is my personal journey of living and surviving a prostate cancer diagnosis.
When first diagnosed with prostate cancer back in early 2000, I was bloody angry. I felt blank, empty, confused and could not believe the diagnosis. The early signs were picked up a few years prior when I underwent a Transurethral Resection of the Prostate (TURP). Tissue samples were taken and examined by pathology – some were found to be pre-cancerous. I was 46 years old at the time. Fast forward 3 years and after moving cities, I realised I hadn’t returned for a medical check-up. My GP referred me to a urology specialist and I was shocked to find out my test results were positive for prostate cancer. With a Prostate Specific Antigen (PSA) blood test score of 10 and a biopsy Gleason score of 6, the urologist wanted my prostate to be removed. There was no way I wanted that to happen!
I was overwhelmed with feelings of anxiety, frustration, and guilt for not having the follow-up tests earlier. What could I have done differently? Would the side-effects of treatment be worse than expected or not? I remember the moment of being at home after getting my results – and the feeling of rage. I remember playing some rock and roll music at full volume, opening a bottle of red, and preparing dinner. Maybe not such a good way to start dealing with this diagnosis!
Considering my options
Surgical removal of the prostate, at that time, was full prostatectomy by cutting the lower abdomen open. This was the treatment option recommended by my specialist. There was no mention of other options such as Radiotherapy, or even Active Surveillance. I was in doubt and confused and couldn’t find a reliable and relevant source of information… and Dr Google didn’t help with the possibility of dying on the table during surgery! My biggest worries however were about dealing with erectile dysfunction (ED) and incontinence. I was told that, being so young, I would recover from these, but there was no real information about how that would happen. I even looked at Cryotherapy (freezing the prostate) and HIFU (High-Intensity Focused Ultrasound), but neither of these alternative treatment options grabbed me. With my background in natural therapies I made several lifestyle changes, but at times I felt I was on a journey that I had no control over. At the eleventh hour of deciding whether or not to have surgery, I had another biopsy and was relieved to find out the prostate cancer was downgraded to low-risk! This meant that I could now opt for Active Surveillance, instead of proceeding with surgery.
Active Surveillance for 10 years
For the next ten years, my urologist and I agreed that I would undertake Active Surveillance. This meant having regular blood tests to check that my PSA levels were low, and a yearly Digital Rectal Examination (DRE) conducted by my urologist. The prostate gland was always soft, so no other action was required. In 2010, my PSA score was 1.9, which is usually no big deal for a man of 60.
The cancer is back
In December 2010, I had a routine check-up with my urologist. As part of the DRE examination he felt that the prostate gland was firm, and a biopsy was needed. In January 2011, thankfully the biopsy was carried out under a general anaesthetic rather than enduring the procedure whilst being awake!
Later in January, after the biopsy results came back, I was in the consulting room with my wife Fiona, when the urologist said the cancer was now more aggressive. I felt blind-sided, and then blank. The cancer was no longer early-stage and low-risk, so I had fewer options to consider. I was between a rock and a hard place. On reviewing my past blood tests, even though the PSA had been going up and down slightly, the Free-to-Total PSA had been going down to about 10% which is not a good sign. Free PSA tends to be lower in patients with prostate cancer.
I needed time to think through my situation, so when my urologist urged me to start the paperwork for surgery, I pushed back. However, Fiona wanted me to have my prostate out. We had only been married for two years, and she didn’t want to lose her man. I needed time to think it through. Now I felt even more confused and full of doubt.
Considering my options…again
Again, I looked at Radiotherapy, wanting options to avoid the erectile dysfunction and incontinence, but this treatment had its own long-term side-effects. I still had a level of doubt about all treatments, feeling blank most of the time, and feeling as if I was walking around in bubble, not connected to anyone. I felt as though I wanted to yell out “Ha, I’ve got prostate cancer”. There didn’t seem to be any way out of this situation. I couldn’t avoid the uncertainty of decision making, and then having to deal with the consequences of my decision.
With some areas of my prostate cancer being classified as more aggressive, I didn’t really know how long I had to make my decision, or if the cancer had escaped the gland and gone walkabout. At the time, there was no MRI to scan the prostate and see where the cancer cells were situated within the gland.
With the cancer back, I needed an answer to the dilemma of what to do. I had information, thanks to being involved in a prostate cancer support group, and delivering presentations on behalf of the Prostate Cancer Foundation Australia. Decision making, however, is another story. I felt empty, blank, undecided, and angry. I recall walking down to the beach one morning after the diagnosis, and just standing in the water, crying and yelling out – it felt so unfair. I thought I had taken good care of myself, but obviously not! “Just take the bloody thing out.” I’d had enough.
Fast forward to today
Mercifully, a lot has changed over recent years in prostate cancer treatment and diagnosis. MRI scans are now used regularly by urologists before biopsies. Biopsies are often done via the perineum, rather than via the rectum, which means lower infection risk. More urologists are now considering Active Surveillance if the prostate cancer is graded as low-risk.
Helping other men navigate their treatment options
For men recently diagnosed with low-risk prostate cancer, there is a trial running through the Peter MacCallum Cancer Centre, in conjunction with Swinburne University. It is called NAVIGATE, and the trial participants (men and their partners) will have access to a lot more relevant information concerning treatment options and side-effects. The trial is evaluating an online tool designed ‘by men for men’ to help navigate their treatment options.
Being diagnosed with low-risk prostate cancer is particularly challenging for men when considering which treatment option is best for them. The uncertainty and confusion around choosing from the available treatment options tends to produce considerable anxiety, especially when all those treatments come with their own side-effects, short-term and long-term.
Register your interest at www.navigateprostate.com.au or you can contact the Navigate team on 03 8559 7453 or email [email protected]. If you are suitable to participate you will be provided with access to one of two prostate cancer information websites which hopefully will reduce some uncertainty that may be churning inside you. Partners are also welcome to participate. The trial is a definite game-changer headed in the right direction for prostate cancer and decision making.
The stories and experiences contained within this blog post represent the views and opinions of the writer. This blog post contains general information only and we recommend that you obtain independent advice specific to your circumstances from your healthcare professional. None of the organisations associated with the Navigate trial endorse medical products or brands mentioned here.