Yes, it seems counterintuitive to think of yourself, a man with incurable advanced stage prostate cancer, as being lucky. But I can’t help but think that I’m luckier than lots of men in my position.
Taking my luck for now
Perhaps the fact that I was ultra-fit when I was diagnosed in May 2017, aged just 60, is a massive part of me being lucky. Or perhaps it’s because I’ve maintained a pretty decent level of fitness since then, despite 4 years of hormone therapy doing its best to make life as hard as possible to do so.
I’m sure that those are contributing factors but, I’m afraid, the harsh reality is that some men respond really well to treatment, and for a good length of time, but other men don’t. At the moment I’m in the former camp, and my oncologist tells me that I’m in the 10% of men who are still on first line treatment after 4 years from an incurable diagnosis. I’ll take that for now and really hope it lasts for a good while yet.
Unfortunately I know of other men diagnosed after me, with a similar diagnosis, who haven’t fared as well and are no longer with us. That always brings it home to me that I must make the most of life while I can.
The order of treatments
The key to the future improved overall survival rate for men diagnosed with advanced stage prostate cancer seems to me to be all about understanding why some men respond really well to one treatment but others don’t, and also getting a much clearer picture of the order in which treatments should be delivered.
Once I started on this treatment, my PSA plummeted from its starting point of 129 to not detectable and has stayed there ever since. It begs the question as to whether I would have had the same outcome if being on standard treatment of Docetaxel. Also, if other men do as well on Abiraterone, why is it not available to all men as standard first line treatment?
Throwing different things at cancer
I’m convinced that a whole heap of work is being done to work out what personal treatment regime would best suit which man, but the results can’t come quickly enough. At the moment it seems very scattergun! We’ll throw this at it and see if it works and, if it doesn’t, we’ll throw something else at it until something works, or doesn’t. We really must do better than that.
The circumstances around me managing to get Abiraterone also make me think I was a little lucky, given how affective it’s been. I was diagnosed in May 2017 and was very open about my diagnosis from the very start. So when it was announced at ASCO in June 2017 that this new “wonder drug” was proving very effective, a number of friends from all over the world brought it to my attention. I mentioned it to my oncologist, insurers agreed to fund it, and the original treatment plan of Docetaxel was replaced.
Making the most of life
Now, I want to make the most of being “lucky.” I know the treatment will fail at some point but, until then, I’d like to fill my life with joy and live life to the fullest. As of this writing, I get to walk my daughter down the aisle and I can’t wait, given that 4 years ago I didn’t think I’d ever get to do that.
I spend as much time with my two grandsons as I can, as they bring so much joy to my life. I am looking so much forward to being able to travel again, as it has always been a massive part of our lives.
Perhaps more importantly, I want to keep raising awareness so that as few men as possible need to be “lucky” to get to 4 years post-diagnosis. At the same time, I want to remind people that they really shouldn’t wait until they get news of a dreaded illness before deciding to live life to the fullest!
Have you gone to a pelvic floor physical therapist?