Tony Maxwell was one of three recipients of the Max Gardner Award for 2018 for recognition of his contribution as a member of the Network.
1. How does it feel to be recognised by your peers and receive the Max Gardner Award?
I was a little surprised and very honoured. There is a real personal aspect to receiving this award for me. In 2003 when I was diagnosed, I hadn't yet heard of PCFA and Prostate Cancer Support Groups. I wound up contacting Cancer Council and I was put through to have a chat to someone else who had been through prostate cancer. That person was actually Max Gardner. I had 2 or 3 conversations with him and have always held him in high regard, he really helped me.
2. What has been your experience with prostate cancer?
I was originally diagnosed with localised prostate cancer and had a radical prostatectomy, which looked to have done a good job initially. However, when they rechecked my PSA [Prostate Specific Antigen] it didn't drop. My Gleason Score was 8 and towards the aggressive end so they redid some scans and kept checking my PSA levels.
I then went from my Urologist to a Medical Oncologist, who I have been with for 16 years now. Essentially, I have been on ADT [Androgen Deprivation Therapy] for that entire time. The initial ADT knocked the PSA levels down real low, but it did come back up and we had to add some variants to the treatment. I was able to get onto a clinical trial involving Enzalutamide. I was on 4 tablets a day and still going with the original Lucrin. A while back when I had some issues with kidney stones, they had done a CT scan and noticed lesions on my lymph nodes. When they rechecked this after the treatment, they noticed the size of these dropped significantly.
Treatment wise, I am at a point now where I continue until something stops working and then have to decide what to do next. I have access to the drug through the trail, which I wouldn't be able to afford otherwise. I likely will move to radiation next, but I can't do that yet because it would interfere with the trial.
The main side effects of ADT treatment are fatigue and it knocks your sex drive to the boundary. However, there is this factor of playing for time. Maybe when it comes to it, this time will mean better drugs and higher quality radiation therapy are available.
I remember I was quite scared at first but earlier on in the piece I must have rationalised my way through this and decided to get on with my life. I've been told this is about acceptance of your disease. In my case with the Enzalutamide trial, I had an exceptional response making me one of the only ones who has continued through the trial this far. This has motivated me to work to help guys with advanced prostate cancer.
3. How did you come to be involved as a PCFA Network Member?
Max Gardner made me aware that PCFA existed. I joined the Westmead Prostate Cancer Support Group due to this. I was minding my own business as part of that group in 2010 and PCFA were looking for someone in the western suburbs of Sydney to be part of the state Chapter Council, so I said ok. I must have impressed somehow because from there it was a rapid progress to the SAC [Support & Advocacy Committee].
I was asked to attend the Us Too conference and the PCFA Gold Coast conference as part of my work with SAC. I met Jim and Wendy Marshall there, we got talking and we've been talking ever since. I was the first interstate person to work with Jim on setting up the Advanced Prostate Cancer Support Group but still maintained links with the Westmead Group.
I broadened out from here to do more awareness stuff, getting more involved as a consumer rep on prostate cancer research committees. More recently I have worked with the Advanced Group, talking to politicians, bureaucrats and drug organisations, to try and get drugs to guys earlier. I am a big believer that if we can free up some of the blocks in the system, we can make a dent in the number of guys who die each day.
4. What has been a highlight from your years of service to the community?
I think the fact that we tried to do something for people with advanced prostate cancer is a highlight for me. Prior to our Advanced Group, they were sort of forgotten, told "your disease is terminal, go away and have these drugs and then die".
Without offering false hope, what we have been able to show guys is that it is not an immediate death sentence. You can still have positive experiences, participate in family and community. I was someone with a terminal disease for 16 years and a mate in the US has had one for 24 years. There is an element of luck in how your genes respond to treatment and some guys won't have this, but many get extended benefits from treatments.
Given our knowledge of all this it is very important to have a variety of treatments available early on to maximise the time guys with advanced cancer can get.
5. What message would you share on the value of helping others impacted by prostate cancer?
I might be a little odd in the sense that I had a science background many years ago so there was a real interest for me. Guys are not as good as girls in sharing with their peers so I think getting guys to do that more and to get involved in a way that is interesting to them is valuable, whatever it might be. Fostering that aspect of their personalities can help get rid of that fear and allow them to make a contribution that comes natural for them.
Click here for more information about the Max Gardner Award.
