Salvage radiotherapy after radical prostatectomy

A wee update.
I had my final PROSTAP 3 injection Thursday 3/1/18.
Squeaky bum time waiting to see if PSA levels remain undetectable once the HT leaves my system.
This is scary but I suppose we have to find out whether the oncologist is right and I have metastasis or not. I really hope SRT has worked.
I am looking forward to not having PROSTAP in my system after 2 years three months on it.

I am also finding my continence, which had fully recovered after LRP, is not so good. I am not leaking massive volumes but it is now affecting my everyday life.
Perhaps the radiotherapy has damaged the remaining sphincter?
I have been offered an artificial sphincter but the surgeon wants me to try pelvic floor exercises along with solifenacin to see if that helps first.

Best wishes to all, Ian.

Hi Ian

That's good news that the Prostap is now finished, lets hope the Psa stays undetectable. I have mine coming up (PSA)  in March two years after RT finished, my fingers are crossed as well.

best wishes

Steve

Thanks Steve. Here’s hoping PSA stays subdued for us.

All the best!  I would try and avoid any further operations for a while and try the exercises first.  They will at l;east help a little.

Hope everything goes well.

Des

Thanks Des. I agree that avoiding further surgery and trying the alternatives is wise.

Hooe you are ok just now.

Ian

I would just, where possible keep surgery as a last resort if there was another good option that could be taken before surgery - so long as that option didn't preclude surgery after taking it or make surgery more difficult. 

At present I am doing OK.  My worst complaint is my bad knee.  Going to have to give in and have a replacement I think.  Been "limping on" for a year now, not helped by loss of muscle from hormone treatment and then lack of exercise through Atrial Fibrillation and resulting shortness of breath.  The PC and radiotherapy was a breeze compared to the AF and bad knee!  Just had a rushed blood test ready for my 2nd yearly checkup at the cancer centre - the letter re my 2 year check did not get to me so called last week and told it is next week!.  I was waiting for the surgery to ring me and say they had got the yellow form and it was only when my wife said that if I didn't get the blood test done soon it probably wouldn't get through by next week that I phoned and checked and they said the form was ready for me at the larger surgery a little bit further away!  So why not phone and tell me and I could have made an appointment for the test?  Picked it up this morning and went straight to the hospital to have it done - have done this once before but at a different hospital - so glad I did.  The hospital I normally go to would have been overflowing with people waiting for blood tests but I was straight in and out this morning and they said they would get the results to the surgery either tomorrow afternoon or by Monday!  Thing is that was the General Hospital for 3 counties whereas the other hospital I normally go to is a smaller local hospital which they are considering closing - but is much, much busier.  Think there has been a stay of execution on that one thankfully as it serves such a large quite heavily populated area and tends to recruit easier than the general hospital due to communication links to residential areas.  So, here's hoping my PSA is still as low as it was a year ago 0.05.

Des

You have a lot to deal with Des. Your positive outlook is so inspiring. I sincerely hope your PSA is still very very low. 

I have had around 10 blood tests in the last six weeks: neutrophills low, lymphocytes low, potassium high blah blah.

It seems to have sorted itself out as I had a test last Thursday 3rd Jan and haven't heard a peep so I'm keeping my head below the parapet!

Sounds like you will have to get a new knee, it will make a big difference to you if you go ahead.

My mother has had atrial fibrillation for decades (30+ years) and was on digitalis, warfarin etc. Are you on that type of medication for it?

My mum will be 86 this year and all of a sudden an ECG shows that the AF has gone!? Suddenly she was taken off all the meds for that and felt so much the better for it. I was concerned so got her to ask about future care and they said a close monitor of her will take place and at the first sign of AF returning she will be back on the meds. Apparently it can suddenly resolve. 

Let us know how your PSA is when you get it. Take care.

Hi,

Well,  hope they don't get in touch with you about the blood tests and you are doing OK.  The wait for a new knee here is over 15 months so am going to try to get them to refer me to the veterans orthopedic centre in Oswestry - after 37 years in the Royal Air Force think I should get that but I have been refused permission to go there once.  Worth trying.

I am no longer in AF as had a successful cardioversion last May but am still on low dose blood thinners as have other risk factors now including age!  I have heard that AF can reverse as you get older.  I have a friend who has a really bad time with it and is in and out of hospital all the time so am hoping she can "grow out of it" as she can't go anywhere because of it.

Couldn't get my PSA today as away from home all day.  Will phone on Monday afternoon,

All the best

Des

I haven't updated this discussion for a while. I had my last PROSTAP 3 injection on 3/1/19.

PSA on 28/6/19 is <0.1 which is fantastic. I have to say I think my testosterone is still pretty low and 

hope that as it rises my PSA stays low.

It's not been measured but I think I will ask for it to be done next blood test.

White cells, neutrophils and the rest of the immune system bloods are still below minimum but other than fatigue and poor sleep I feel fine!

Having had surgery, hormone therapy and salvage radiotherapy all within a relatively short time frame I hope to be off treatment for a while....

Best wishes to all,

Hoping your wish comes true.

Jonathan x