Guest post: my journey to salvage radiation after prostate cancer

By Dr Rhys Leeming

The only thing worse than being told you have prostate cancer (PCa) is being told your primary treatment didn’t get rid of it. If left unchecked, the cancer will continue to grow and eventually metastasize to other parts of the body and then you are in real trouble. Such a relapse is diagnosed as biochemical recurrence (BCR) when your PSA levels rise again to a certain point. In Australia the threshold above which they start advocating secondary treatment is a PSA of 0.02 ng/L.

For most guys the recommended secondary treatment is salvage radiation. There is a lot I wish I knew upfront and didn’t have to search for or find out the hard way. This post and the next one are intended to provide a menu of options to help get you through.

Clear margins and good initial recovery from surgery

I was diagnosed with PCa in September 2020 and by late November I’d had a robotic nerve sparing prostatectomy. My Gleason score was 7=3+4 with only 10% of the tumour rated level 4. The margins around the excised prostate were clear but the comment was “wafer thin margins.” I recovered my continence somewhat tortuously. At least my erectile function recovered quicker than most. After 15 months’ diligent rehab I was only needing half a dose of PDE5i’s like Viagra to achieve a perfectly usable erection.

Rising PSA after two and a half years

But at the 2.5 year mark, my PSA started to rise. It went from less than 0.03 ng/L which is considered not detectable to 0.4, then on and upward quite slowly. I began having PSA tests every three months so I could monitor the rise better; more data points. A couple of times a subsequent test might be the same as the last, or even a little lower. But the benefit of more data points is that you can better see the long term trend and more accurately and earlier predict the rate of rise.

It became apparent after about 18 months that my rising PSA wasn’t going to halt its progress. I could also see that the doubling time was settling at somewhere between 12 and 15 months. This, along with my post pathology Gleason score told me that my cancer was not particularly aggressive, but also that it could not be ignored.

Treatment choices

I saw a local oncologist in Hobart, Tasmania on two occasions. But she seemed to flip flop with her advice and didn’t instill much confidence. Around the same time a breast cancer surgeon friend of ours who lived in Sydney suggested I consult with one of his mates at Royal North Shore Hospital in Sydney. I consulted a couple of times with Prof. Kneebone and quickly realized that despite the additional costs and hassle of going to Sydney for treatment, that is what I wanted to do.

So eventually in early 2025, my PSA reached 0.26 and was now above the recommended level for action. I still had plenty of time and for personal reasons organized to have treatment in Sydney in October of 2025. By July my PSA was 0.31. I agreed to have 20 sessions totaling 57Gy of radiation over 4 weeks to my prostate bed, no lymph nodes and no ADT. This was the minimum possible treatment but justified by my non aggressive cancer.

Diet and bowel control recommendations that didn’t work for me

They sent me all sorts of info about diet and bowel control. But basically they wanted me on a low FodMap diet to limit gas in the bowel and to start taking Movicol three days prior to treatment and throughout treatment.

I was required to have a full bladder and empty bowel during treatment because of their proximity to the radiation target zone. Fortunately for me I decided to try out their proposed dietary changes a few months before treatment,  to see how they would work out for me. It was a disaster!

Movicol and similar medications are meant to keep your bowels moving. However, its well known that you can end up with more gas, which is really not good. In my case it made me feel disgusting and bloated. I wasn’t going to manage that for just over a month. After a couple of attempts I discussed this with the nurses and they said I could go it alone.

My next post is about what I learned, having explored a wide menu of possibilities, to make salvage radiation as manageable as possible.

Related posts (by the same author)

• The road to dry nights after prostate cancer surgery
• Getting from leaking more than a litre a day to dry(ish) days
• PSA rising after treatment
• Personal action on diet and fitness after PSA rise
• Men talking about sexual health
• Improving PSMA PET scans
• Pro-erectile mechanisms: what worked for me
• The hormones that get in the way of erectile function
• Journey to salvage radiation
• Survivor’s guide to managing salvage radiation