Don't just let it happen, Do something about it.
Hi, I am Tim, and a third-generation prostate person. Saying a survivor is too strong, for me. Being a survivor suggested to me that you are caught in this life and death struggle, which in part is true, but should not be the case.
Assessing the risk
Being a Risk analyst by trade means I look, examine and mitigate all or as many risks as possible. My story starts with my dad, who was diagnosed with stage 4 prostate cancer, 19 years before he passed and not from prostate-related cancer. That's the good news even when diagnosed late there are treatments out there to help, but it is all about the luck of the roll of the dice.
Father's diagnosis of prostate cancer
When I first found out, I went online and learned, read and understand what is being said in the UK, then Europe, and then the USA. Armed with this information you then filter what is right for Dad. My Dad didn't tell my sister and me until he had had his first treatment of radiation. I think, more to the point, he couldn't hide it away anymore. Next was surgery, and at this point, they found cancer had spread and they removed his bladder at the same time. A huge blow, when he came around.
From that moment on, things just improved, with the right medication and proper care and attention to his lifestyle he enjoyed a full and active 19 years, with one small hiccup, the repair following the removal of the bladder broke down and needed a rebuild, the first in this Country, via microsurgery as I understand. However, during my research for dad, you find the very clear message that this is an inherited disease. Off I went searching for grandads' death certificate and there it was prostate cancer, again that was not the cause of death, but it was there.
Seeing the family history
More research and it was clear that my chance of avoiding it was very slim. For me, the question was what do I do to mitigate or reduce this probability? What does the NHS offer? Being 45 years old, the answer was nothing. Smile, roll the dice, and hope. With my background and mentality that was not good enough and I started making noise, but every door and ear was closed. Nobody was interested in me or the very significant issue of sons and brothers. GPs and the NHS made comments that perhaps at 55 Ish you should have a PSA test.
Good healthcare and first PSA test
Fortunately, a good health care package come with my job, and off I went for my first PSA test at age 48. The result, ok, within a boundary, and the first log into my PSA excel spreadsheet. This pattern continued for 5 years, with my PSA increasing. Yes, I had a couple of oddball numbers but another test a few weeks later, and all was good. What I know now and didn't at the time was that you should not cycle or have sex 48 hours prior to the test!! Being a keen cyclist may explain these oddball numbers.
PSA rise suggests a problem and further testing
Anyway, at 54, that is a year before the NHS suggested PSA tests, my latest PSA TEST had CROSSED THE RUBICON and with 5 years of data all going one way clearly suggested a problem. Next was the testing, digital exam first, yep, slightly different. Then the MRI didn't find anything wrong. This area scares me because I worry how many men would have been sent home think great all clear? Without my five years of PSA data that may have happened but the consultant knowing my background knew what I was thinking and said, numbers don't lie, we need to do a biopsy and it was this that found cancer.
Prostate cancer diagnosis
I was told that it was a slow-growing type. My question was would this change to a more aggressive type? This is important for the next decision on what treatment I decide on. A vague type of answer was all I needed Having considered the various treatments, the side effects, and potential issues, I choose a radical proctectomy via a Da Vinci machine, I even chose the surgeon, Risk management.
The younger and fitter you are the better the odds that you will reduce or minimize the side effects. Most of the UK data and information is geared toward older men and look and reads very worrying. I took heart in American studies showing that younger men can get through this easier and with no or fewer issues. For me, 6 years later the only side effect is that when I need to have a pee, I need to have a pee. No big issue at all.
Comming to terms with cancer
Mentally, I was at peace with all of what was happening. I had reconciled myself and prostate cancer years before. My very simple approach was, Can I change anything, No, can I avoid it somehow, No, Can I do anything about it, No. Ok, Then, what do I need to do to mitigate the issue, reduce the problem and minimize any issues and come through this with a good life? All the data shows that if caught early and treated, it is very survivable. I knew what treatment I wanted, although this was very hard to define and feel 100% comfortable with because there are so many different treatment methodologies, and nobody will point to this as the right treatment for you, as a lay person you're on your own.
Proastatectomy as treatment
I decide on a radical prostatectomy via a Devinci machine. This is me just managing risk and I also chose the surgeon. The outcome of the analysis of my prostate was that a number of the cancer cells were of the more aggressive type, but nothing had moved past the prostate wall.
In short two things need to be happening right now,
1) start a database of all sons and brothers and start testing them from age 45. It's cheaper in the long run?
2) Better communication for younger men, treatments, and outcomes. These are potentially different than the average-aged men that get this disease and the information is based on.
Lastly, Men, be proactive and help yourself, don't wait for something to happen to you.
What emotions have you experienced from your prostate cancer journey? (select all that apply)