My prostate cancer story and the benefits of joining a prostate cancer support group
In February 2023 I was diagnosed with low grade prostate cancer which was confined to the prostate. Three months later, I joined the Eltham Prostate Cancer Information Support Group following a recommendation from Carla D’Amico, the prostate cancer support nurse at the Austin Hospital. Along with many sources of information available to prostate cancer sufferers, this was another one but unique in that it involves meeting with other men, all of whom have their own unique stories of prostate cancer to share.
One of the benefits of joining such a group is the camaraderie shared, and knowing that you are not alone with this disease. Being in the group is a two way process – you learn from other men’s stories and those men learning from yours. You are not there to get medical advice but to listen to the experiences of others with the hope that this may help you (and in my case, me) to make a treatment decision. Joining a group before having treatment was certainly a good decision but the on-going support after treatment is equally important and beneficial.
In this group, only one other member was in a similar situation as me in that both of us were yet to decide what treatment option to pursue. Most of the other men in the group were diagnosed many years ago and in many cases, surgery was their choice of treatment as was hormone therapy post their surgery. Listening to them certainly enlightened and informed me as to the pros and cons of this treatment option.
At my initial consultation with the oncologist, surgery was one of three options presented to me, the other two being active surveillance and radiation. Initially, I considered active surveillance, but despite a couple of men having gone down this path (successfully apparently), my thinking was that if the cancer is there then why not aim to get rid of it? So on that basis I ruled out active surveillance.
Surgery did not appeal to me either because of the more significant side effects of this procedure as some of the group had experienced. I also learnt that surgery is not generally recommended for men 70 years or older (I am 76) as the risks and side effects can be greater and more complicated as you age. So the decision not to have surgery was an easy one for me and the group’s experiences certainly helped me here. Some of the group have also had hormone therapy following their initial treatment and their description of the side effects influenced me in my decision of not wanting to go down that path if that was possible.
So I was left with radiation as the option to pursue. The decision to have radiation was a result of talking to a very good and assuring radiation oncologist who told me about a fairly recent radiation treatment called ‘Stereotactic Ablative Radiation Therapy’ (SABR) for which I was a suitable candidate. Essentially this involves using MRI scans during treatment which locates the exact position of the cancer in real time. Some of the benefits of this are that higher doses of radiation can be given and targeted very accurately to within millimetres of the cancer in the prostate thereby minimising the effects to the surrounding healthy tissues.
In addition, only five treatment sessions are necessary compared with twenty or even more sessions with conventional radiation therapy. Also, I was told that the side effects would not be as significant as surgery and that I would likely not need hormone therapy following the treatment.
Three weeks after the treatment, the side effects I had were related mainly to urinary issues, which although uncomfortable and eased with medication, lasted only about eight days. So after a non-invasive treatment procedure and short-lived side effects, everything seems to be back to ‘normal’ – for now at least. The whole treatment process went extremely smoothly and the support from the Austin Hospital was fantastic. But of course, like everyone else in the group, I will need to be monitored on an on-going basis and if the experiences of the group are anything to go by, this will be for a long time to come and not unlike the active surveillance option described above.
I have appreciated the opportunity to describe my treatment story to the group who were very interested in the relatively new radiation treatment now available. I hope also that other men with recently diagnosed prostate cancer will join the group so that I can also tell them my story and that this may help them with their decision making.
This story was submitted anonymously for privacy reasons.