Salvage radiotherapy after radical prostatectomy

Hi Ian,

I had 32 sessions of salvage radiotherapy to my prostate bed in the summer of 2014 after having had surgery in January 2014.

The side effects vary from person to person, not least because of exactly where the RT is aimed - where your recurrences are is not going to be exactly the same as where someone else's are.

My salvage radiotherapy was still aiming for a cure, just as the surgery had been. Although that was not achieved in my case the fact that we're all different means that it is achieved in many cases, so it's worth talking to your doctor about that.

My side effects included severe fatigue, which resulted in needing to sleep for a couple of hours during the day. Some of the fatigue might have been caused by the daily 70 mile round trip to the place I was being treated and also by the return to frequent peeing during the night, something that had reduced a lot after surgery. I also had soreness when peeing and terrible pain when pooing. These were the worst side effects, which is why I remember them, but I vaguely remember others, too. In my case the side effects started to reduce about 6 weeks after the RT finished but did not go completely for around 10 months. In reality some have remained, but are not constant, such as soreness inside my rectum and a few other bowel problems, but nothing that I can't live with. Whatever side effects you get it's important to tell the radiologists and your oncologist as they can prescribe things to relieve problems.

The following year I had more radiotherapy, that time 15 sessions to my pelvic lymph nodes. I was prepared for everything that I'd gone through before but suffered very few side effects in comparison, which highlights how where it's aimed can make all the difference.

All the best

Jim

Hi Ian

I have contained prostate cancer and currently on Prostap, awaiting RT in may/June to hopefully eradicate it. However, I have a friend who had a prostatectomy about 8 years ago. He had follow up and RT and I must say seems to suffer. I think he got a lot of bowel, rectal damage and suffers as a consequence. I hope you make the right decision for you. Good luck

n

Thanks for the reply n,

You have touched on my oncologists main worry and mine's too of course. I am so sorry to hear that your'e friend is left with these side effects but it is useful for me to hear about this to help me decide. My oncologist is not overly keen due to the potential of such serious side effects I cannot fly or travel etc. The potential for constant abdominal pain and diarrhoea was mentioned which I don't want to face in reality. I can live with side effects if they are temporary and reduce in severity, not necessarily going away but greatly reduced.

But ..... I  am hung up a bit on attempting another curative option, albeit with about a 37 to 40% chance of success in that respect.

My PSADT was also quick (1.2 months) indicating aggressiveness and there is some evidence that salvage radiotherapy can improve control and time to metastasis giving me potentially more time on this planet of ours.

That's why I am interested to hear from those having had a radical prostatectomy followed by salvage radiotherapy to the prostate bed and the seminal vesicle sites to get an idea of how it worked out for them. Did it leave unbearable side effects which reduced quality of life a lot? Did it cure the cancer? I hope your'e treatment goes well.  Ian

Ian

He had the RT about a year after the prostatectomy due to >psa.  He travel abroad with work but wears pads and is constantly fretting about leakage and accidents. The downside is that his psa is now on the rise again :-(

He's decided not to have HT but to ride it as long as he's able. He's a very very fit 67 yo, rides a bike, long walks, gym etc.

I'm really hoping my RT does no damage. Its our ruby Wedding Anniversary this year and we booked a cruise but the Insurance company (Staysure) have declined to cover me so we're stuck I UK. Keep us informed as to what you decide. Good luck, neil

Hi again Ian,

Since my previous post I've been wondering, what's your current Staging and have you been told it's changed since you were originally diagnosed?

Jim

Hi Jim,

After surgery in 2015 I was staged at T3a, N0, M0.

Since then a tumour has appeared on the prostate bed and a second tumour in a seminal vesicle remnant. Because of the short time to PSA rise, the PSA  value and the short doubling time the oncologist is concerned about metastatic spread being there but not visible yet. I was sent for a PET scan on 20/12/16 which doesn't show any spread or node involvement but the oncologist has talked about possible false negatives due to the PET scan not picking up anything less than 5 mm in size. I started hormone therapy straight after the PET scan. 

The MDT met in early January and recommended radiotherapy but my oncologist is really concerned that there is too much bowel in the path of hitting the seminal vesicle tumour which could potentially leave me with constant abdominal pain and diarrhoea. I am attending a planning scan for radiotherapy today and will meet with the oncologist again soon to discuss the results and the risks of proceeding. A decision will then be made on whether to proceed or just remain on hormone therapy. Sorry this is so long and thanks for the earlier reply too. Best wishes, Ian.

That's the planing scan done, managed to have a full bladder which is good considering I've had a prostatectomy. Will meet the oncologist soon to see results and decide on whether to proceed with radiotherapy or just stay on hormone therapy. Difficult decision. These decisions are very difficult and exhausting as we are choosing which poison to take. Best wishes to all.

Thanks for the information Neil, I'll keep you posted on my decision.

Sorry to hear you can't get travel insurance, that's another side to being treated for prostate cancer. I hope all goes well with your RT.

An update on salvage radiotherapy. My oncologist was happy with the planning scan and I have gone ahead today with my first treatment after he went through the details of the plan. 19 to follow. He is targeting the prostate bed and the seminal vesicle remnant where one of my tumours is. I am nervous about this but also hopeful that my recurrent prostate cancer can be dealt with despite my oncologist being highly suspicious of microscopic metastasis. I will remain on HT for two years after the RT with PSA readings taken every three months. Best wishes to all. Ian.

good luck,Ian

As someone else on here has said we are all different and much depends on how well focussed the RT is.

I had a prostatectomy in Feb 14 and 33 sessions of RT in march 15 to the prostate bed. I had minor incontinence for around 5 weeks after the operation but had no side effects at all from the RT. I am still on a three/ four monthly PSA check regime and hopefully it will remain undetectable.

So there are reasons for you to hope for a similar outcome in terms of minimal side effects and I hope that your experience is as positive as mine has been.

JD