Incontinence has been an issue since the RP and even though it has improved still leaked around 30 ml a day.
Delaying radiation that I was recommended by one institution but some Oncologists say to delay radiation for more recovery. Even though my PSA is 0.01 on the meds, i worry about metastasis.
Not sure if incontinence may improve more with time. Still doing Kegel exercises.
Any ideas?
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Chipichape1
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Your cancer can't grow for at least a couple of years while you are taking hormone therapy (especially with Nubeqa too), so there is a good opportunity to let your tissues heal before beginning salvage radiation. The radiation will stop the healing of urinary function and may reverse it.
Thanks very much for your reply. Your answer is reassuring that I could wait a bit more. And that is what I am doing but being nervous about it. I am 11 months post RARP with a Gleason 9 and some extra prostatic extension. MD Anderson at 8 months did psma and mri both negative with PSA of 0.02 and recommended ADT and radiation. My local oncologist added nubeqa and now my PSA is 0.01 after 3 months. Being in the medical field myself I have consulted with several specialists regarding the issue of the continence and radiation which like you said affects negatively the incontinence but I am stuck at around 1 ounce of leakage per day and more if I drink more than usual. I still do Kegel exercises and for two months I did electrical stimulation with a probe, and it seemed to work some, but is not very comfortable as you can imagine. I think I’m gonna be working aggressively in restoring the strength of this sphincter for a couple of months and hope I’ll be in the best possible shape before radiation.
The other point, as a couple of oncologist mentioned, is that radiating the prostatic bed and the pelvic nodes is just a guess, and there are side effects from radiation. However, I believe that the guidelines call for Salvage radiation with Adt and that’s what I’m gonna be doing, which hopefully will allow me to take some holidays from the hormone therapy.
If your cancer is already out of the expected radiation field, which is something we just can't know for certain, then whether you do RT now or later will not matter. My cancer was outside of my prostate when I did RP and it was also outside of my salvage radiation field. There is no way to unequivocally know, prove, that cancer cannot spread while on ADT - making treatment decisions even more difficult.
I agree. There is no way to know if I have micro metastasis outside the pelvis and with the low PSA of 0.2 the psma most likely is negative.
That is why a couple of uro oncologist believe that there is no rush for radiation and even maybe believe that you don’t need to radiate unless there is something obvious. However, the most likely place that there is cancer for sure it is at the prosthetic bed and the pelvis where the recurrence happened.
I could hardly say I had any level of incontinence. Occasional dripping during stressed body positions. I read that it would get better during the first year, max a year and a half. I noticed very slight improvement up until 2.5 - 3 years. Don't haste in getting sRT. I don't, by taking a miniscule dosage (1/10) of Bicalutamide.
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