Hi Eddie
Welcome to the forum, looks like you have had a fair bit of treatment so far so yo must be quite used to the process by now.
If you have a look at our profiles you can see our individual stories - click on the name of roundel.
I am just a year in now, a high PSA and then Triplet Therapy (two lots of hormone therapy and chemotherapy).
Next week I am to see my oncologist about radiotherapy.
Having not had the opportunity to do much research about the ins and outs of options - I didn't really have any, it was just a case of hit it quick and hard - I have now had time to look into RT and am happy to go down that route if offered (likely EBRT over 20 sessions). In my case I have mets in pelvic lymph nodes and abdominal ones which are difficult to get to so I will be on HT for life. I am anticipating that the prostate gland will get blasted and perhaps some of the pelvic ones - but the abdominal ones are not on due to proximity to other organs. It was described by my consultant as hitting the mothership and then the outliers will wither.
HT can be hard to adapt to. The brain fog, muscle loss, loss of libido and shrinkage to genitals, loss of body hair (to go with what I lost from chemo), change to emotional state ( I can weep at some silly and sad things) means that it is a big decision if you are not aware of the consequences. The biggy is FATIGUE though.
The best thing to do about all of that is to just get on with it, exercise (I use indoor bike, resistance and weight exercises) and to take up mindfulness activities (Yoga). The more you exercise the better it is.
I also keep very well hydrated and manage a minimum of 2 litres of water per day, I do not have caffeine or alcohol at the moment either. it is a battle - some of the meds mean you might end up pre-diabetic like I have, but all of the above activities are countering the progression of that. I am also loosing weight as the HT tends to put it on.
With planning QOL can be OK - I still get out and about, travel to Scotland from the Midlands and have just been helping my daughter move house (OK I am tired!!). Most recently the worst part has been coming off the steroids associated with Chemo - that has taken a couple of months to readjust and I am now feeling a lot perkier!!
Not sure if that helps? Have. look on this site to see if there is a forthcoming Living with ADT session - I did it a couple of weeks back and it was really good.
Best wishes - stay positive CeePee |
User
Eddie, you asked for experience, make a cup of tea and read my bio. Don't let it put you off, we are all different and some of my experiences were very rare.
You could have radiation treatment to the lymph node if the think the prostate bed is clear. I had two lymph nodes treated on two separate occasions but then they found the disease had spread to distant lymph nodes. There were no side effects from the RT to the lymph nodes. RT to the prostate bed did considerable but rare damage to the bladder.
Thanks Chris
User
Hi, Eddie.
I'm sorry, that years after RARP, you are now encountering other difficulties, but welcome to the forum, mate.
I'm not medically qualified. I do not have any personal experience of salvage treatment.
Reading your bio, it appears it was over 5 years before there was a recurrence. Your psa doubling time is a year and still at a very low level. I believe these factors are all favourable towards curative treatment?
What was your original Gleason score and cancer staging?
Is the plan to use SBRT on the lymph node? If so, as far as I'm aware, this would involve very few visits and only short term ADT?
Edited by member 15 Aug 2026 at 08:15
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