EBRT planning conundrum

I don't know where you're being treated and I don't know the treatment centres in your part of the country, but you might well benefit from a second opinion at one of the major prostate cancer oncology centres. Your case is on the edge, not run-of-the-mill, and a bleeding edge research oncologist might have more tools up their sleeve and be more experienced in dealing with cases like yours. Even if you aren't curable, zapping the visible cancer at the outset could delay the need for lifetime hormone therapy including an extension to life, and the opportunity for treatments which don't yet exist. Another oncologist might feel they could try that with less risk to your QoL.

Wishing you all the best.

Hi Darren

I experienced something similar ie late change of proposed RT treatment to restrict to prostate only rather than treat the wider area. The explanation given was similar ie couldn’t see the lymph tumours on latest scans and didn’t want to “shoot blind” and cause permanent damage to my bowel. 
I was similarly rather upset that they had taken away this option of wider treatment (there went any hope of a theoretical cure however unlikely)
I was fortunate enough to have a second opinion option through my employer which I had requested previously and I ended up receiving a second opinion report from a specialist in the US who had reviewed all my notes and scans. 
He concurred that the risk was not worth it and that the RT should be used more sparingly. 
2 years on from RT, I’m glad I haven’t suffered any QoL issues as a result.

Best Kevin

Thanks Kevin. I think your comment really crystallises the thread thats run through my approach to tackling this damn thing (and I suspect others diagnosed as incurable):

’there went any hope of a theoretical cure however unlikely)’.

It’s that thought that if I don’t hit the prostate and all the visible/previously visible mets that recurrence is that much more likely. Difficult to square. 

Very interesting that your 2nd opinion, and one from an Oncologist operating in a totally different healthcare system agreed with the original plan to use RT sparingly. I’m genuinely pleased you haven’t suffered any QOL issues and hope for many years of static PSA results for you.

Roger that (hint of ex-mil there?) thanks for this. Did you have pelvic lymph nodes radiated or any other structure in the pelvis.  Glad to hear you haven’t had any issues either. 

Hi Decho,

Before I reply to your response, I wanted to thank you for your kind response to me earlier in the year in January when I was first diagnosed and in that very shocked and numb state. I’ve noticed that there are a core few of you on here who always reply to the newbies and offer your support at that very desperate time during first being diagnosed whatever the cancer staging is. Thank you for this. I’ve found reading about the lived experience of blokes and their partners on here enhances the clinical side of managing this. To that end…

Your RT response  is really helpful. The Oncologists of course will see patients who have life changing side effects post RT impacting bladder, bowel and bone health that we are all warned about but perhaps don’t truly understand what it’s like to live with those side effects. I don’t envy their job and like you say they’re doing their best for us all. They want to kill our cancer but want us to enjoy life as much as possible as well. 

Very interesting they offered you pelvic radiation without spread or a target? Have I understood that right. I think the important bit I’ve taken from your post is the flexibility and subject to change nature of RT planning by the Oncologist. Put simply what you are consented for and agree to may change. Could be related to imaging or newer research or in my case, collaboration with colleagues that influences the Oncologists reasoning.

Also feedback on here shows just how reluctantly (understandably) radiating near the bowel Oncologists are even to potentially kill mets and possibly prognosis. 

Could I ask how your pre and post scans differed after RT to the prostate? I will probably be having the same- 20 sessions to prostate. 

I was well familiar with the walk of shame, Darren. But it didn't do much for me - and I couldn't pass wind without emptying my very full bladder. So I used to get dressed, have a sandwich in the canteen and then empty whatever came out, if you know what I mean. On my final session, the scan showed that I was full of wind again. I was about to get off the bed when the radiotherapist told me to stay there, pull down my underpants and adopt a position. Then, with my permission, she inserted a rectal catheter and in two minutes all my wind had been silently evacuated and we proceeded with the treatment. What a time saver all round! No need to sterilise the bed for the next patient only to have to do it for me again. No need for a second pre-treatment scan. No need to possibly (or in my case, definitely) have to empty my bladder and start drinking again. And no walk of shame, be it down the corridor or to the canteen, when everyone in the waiting room knew why. 

The one time I had to do the walk of shame round the hospital gardens trying to fart with a full bladder, it just wasn’t going to happen without peeing myself. So they gave me another enema to use and off to the loo I went. The moment the nozzle hit my back passage was enough to let a huge one go….along with the contents of my bladder. So, another 3 cups of water and another 30 minutes waiting. Sometimes you’ve just got to laugh🤣🤣🤣

Thanks Decho. Really funny the whole bladder and bowel prep looking back and all of our efforts to get the radiotherapy at the allotted time!! 

In my cancer centre we all got given a unique looking water bottle to use by the nurses to keep for bladder prep so we could all identify each other amongst the other patients. 

A bit like running race T-shirts it actually helped to strike up conversation with people going through the same thing. 

Hoping the Prostap works as long as possible. I’ve been told it’s life long treatment. Onwards and upwards!

Well after 14 months on Prostap I think on balance the side effects are manageable. Not perfect but it’s extending my life no doubt. Fitness wise I lift less heavy weights and running is harder especially hills. I just keep at it. Hot flushes are improved by reducing coffee but I can’t resist coffee at times! Just love a flat white and accept that night I’ll have some hot flushes. Finger joints are a bit stiff and achey and the Achilles. All manageable really. Not desirable definitely but ok.

Onco said at the 3 year point I could try a hormone holiday but I don’t know if I’d dare! He said it with great reservation even though lymph nodes and prostate Ca can’t be seen on imaging. 2 tiny bone nets still there but stable. You’re very brave allowing testosterone to return. I know our diagnosis are different. How often are you having PSA checks now? Orchidectomy sounds so drastic but I do understand where you’re coming from if the side effects from hormone therapy are really bad.