Blog | Prostate Cancer: My Journey
Prostate cancer is not a death sentence, if caught early. Making the decision around treatment is scary, difficult, anxiety-provoking and a decision that is not always clear-cut and final. This is my personal journey of living and surviving a prostate cancer diagnosis.
When first diagnosed
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!
Feeling overwhelmed
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 starting 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 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 to have surgery or not, I underwent one more biopsy – and the results were negative. The tissue sample was benign. Yay! No prostate cancer!
Active Surveillance for 10 years
For the next ten years, my urologist put me on an Active Surveillance management plan to monitor that the cancer hadn’t returned. 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 needed to be taken. In 2010, my PSA score was 1.9, which is usually no big deal for a man of 60
The cancer is back
In early 2011, 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. This time around, thankfully the biopsy was carried out under a general anaesthetic rather than enduring the procedure whilst being awake!
Back in the consulting room with my wife Fiona, the urologist said the cancer was back. I felt blind-sided, and then blank. This time the cancer was more aggressive, so I had less options to consider. The core tissue samples showed Gleason scores of 6 (3+3, low risk) and 7 (4+3, intermediate, more aggressive). Now 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 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. From 2018, this has changed, and men are now able to have an MRI, covered by Medicare, to determine the location and nature of their prostate cancer.
Back in 2011, I needed an answer to the dilemma of what to do. I had information, thanks to having been 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! I thought, “take the bloody thing out”. I’d had enough.
Fast forward to today
Mercifully, a lot has changed since 2011 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 less infection risk.
Robotic surgery is becoming the norm, depending on the surgeon and their skill level. Radiotherapy is still an option for those men who meet the criteria. More urologists are now considering Active Surveillance if the prostate cancer is localised low-risk, meaning a Gleason score of 6, or in some cases an intermediate risk with score of 7 (3+4).
Helping other men navigate their treatment options
For men diagnosed with localised low-risk prostate cancer, there is currently a trial through the Peter MacCallum Cancer Centre, in conjunction with Swinburne University. It is called NAVIGATE, and participants (men and their partners) will have access to relevant information concerning decision making and side-effects. 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.
NAVIGATE is an exciting new trial for men diagnosed with low-risk prostate cancer, who have been diagnosed in the last three months, and who are eligible for Active Surveillance. If you meet these criteria, go to www.navigateprostate.com.au for further details. You can register online or ring 03 8559 7453. You will then be recruited for further involvement, which will go some way towards helping you make your decision, and hopefully reduce some of the uncertainty that may be churning inside you. This trial is a game-changer in the right direction for prostate cancer and decision making.
