Hi Proper Job
Thanks for asking for my advice.
Couple of questions:
- What was your PSA profile leading up to the RP?
- Did you get given a pathology report and was there anything of note on it?
Sorry to hear they had to go in aggressively - it is kind of a "better we do this than risk issues down the line" and will have been based on your PSA, your pre-op biopsies and scans and would have been discussed in the Multi-Disciplinary team to agree the approach for the best outcome.
At this point, I would suggest worries about adjuvant / salvage may be premature. My advice is to let it play out and let your journey be guided by the results and the medical advice, not your worries. Of course, I am the worlds biggest hypocrite as you will have seen from my post history as I spent way too much time in my head worrying about what might happen. I was all "worst case" and in the end, had a good result post SRT. What this means is that your head game is crucial. It is easy to over research and get worried about obscure stuff. Stick to the basics, use the forum to improve your understanding and if things get sticky, find a counsellor to help get your head straight. It is what I did, and it worked. This may be controversial here, but monitor what load you put on your other half. I was a bit too worried and negative and it had an impact on my wife that I regret.
If you are still on a catheter, make sure to empty it regularly and for the overnight one put it in a bucket or bowl next to the bed. I assume you have an extension tube. Don't worry about the process of removing it - they joy of losing it far outweighs any discomfort.
If you are still on meds and have DVT stockings, make sure you are rigorous on their use.
As you have had lymph nodes removed, keep an eye out for lymphodema around your nether regions and upper legs. If it gets bad, raise it with your McMillan (or similar) nurse.
On the nurse front, these people are angels. They are very supportive, even if you just want to ring up for advice and to let of steam. Don't be afraid to call them.
Your regular PSA tests may be a source of anxiety. I find the best approach is to accept that anxiety and just press on. As you get through more of them, it gets easier. If things to change, the best perspective is "knowledge is power" and gives you treatment options.
That is about it, other than to note the folks here are fantastic and always ready to give advice.
Good luck!
Pete