My PSA in September 2012 was 6.7 when I was 58. I opted for watchful waiting. In 2017 it was 12, which was high enough to say I probably should do something. I opted for robotic prostatectomy in 2018, but my PSA was 0.7 six weeks later, then 1.4 a month after that, which meant it had already spread. A PET scan showed one spot in a lymph node in my groin. The surgeon said lymph node removal was too invasive given the low probability of getting it all. The options were: ADT and chemo to control it until it got me, or try to defeat it with radiation of the area and 18 months of ADT. He said the chance of radiation getting it all was 15%. I thought that since the PET scan showed only one spot and it was local, the odds might be better than that, so I went with radiation plus 18 months ADT.

I was on ADT, Lupron, for 3 months to shrink the tumour, then radiation plus ADT for about 8 weeks, then ADT for another 13 months making 18 months ADT overall. My PSA about 7 months later was undetectable. That might be because the radiation got rid of the lymph node tumour, or it might just be slowly growing back.

Some lessons I learnt:

• My Urologist showed me a graph showing the risk of death was very low during the first 10 years after diagnosis with a slightly raised PSA. That doesn't always mean watchful waiting is best. Even though the odds of dying during that time are low, the tumour can metastasise and it might be too late to do anything.
• If you're going to have a prostatectomy, you need to learn bladder control before the operation, before possible nerve damage. The best way for me was with an ultrasound so the physiotherapist could show me exactly which muscles to contract. I wore an incontinence pad the first night after the catheter was removed after surgery. It had 5 grams of urine the first night. The next night was zero. I haven't worn any since. It also helps if you learn to overcome urge incontinence. I needed to learn how to stop my bladder contracting before I was ready to go. Urge incontinence is when your bladder signals that it's getting full and you feel the urge to go, then as you walk to the toilet the urge is uncontrollable and your bladder contracts. A good exercise is standing at the toilet ready to go, but delaying for a few seconds. Don't rush to the toilet. Gradually increase how long you can delay going. Measure how much you held and gradually increase that.
• ADT has a bad affect on a man psychologically. You might feel unattracted to your wife, which can make you feel distant from your wife and unsure about your manliness. Your feelings can be very confusing. You need to communicate with your wife and include her. You need to discuss how you feel. Physical exercise helps make you feel better. Keeping busy is helpful.
• Due to nerve damage, and especially ADT, you might not get regular erections to maintain blood flow to your penis to prevent permanent damage. It's important to get at least two erections each week. You need to do this the whole time, even though at first you might feel bad after the operation. Viagra and Cialis will help.
• Visits to the doctor can be stressful and overwhelming. After the first few visits, my wife attended all the appointments. She picked up important information that I missed, and also she knew what was going on and could be part of the journey.

Now sex is back to normal and bladder control is back to normal. I'll just have to wait and see what the future holds with PSA readings.

My PSA reading on 01 March 2021, 12 months after finishing ADT was still undetecable.

After prostatectomy followed by followup radiotherapy. The cancer had metastisised to one lymph node. I had a PET scan to see how much it had spread and it was in only one lymph node. The radiologist used the PET scan to target the radiotherapy. Current PSA is 0.

My PSA reading in August 2023 was still "undetectable".

Carl's e-mail address is: kccc12 AT gmail.com (replace "AT" with "@")