Radiation experience, problems and prognostic hopes

[Lymond]

I am trying to locate some folks who maybe have undergone a similar treatment to prostate cancer as I have with perhaps similar results. I confess there are time when I am ready to tear my hair out and I simply wonder if there is any end in sight to the problems I have been experiencing.

I am nearly 60 and up until early last year had been experiencing a rising PSA for many previous years. I had undergone two biopsies, both negative, and there was nothing particularly alarming about a digital rectal exam (DRE). I was told that if the biopsies had not been negative then there might have been concern, but under the circumstances all seemed well. I had a high PSA and there it was, sometimes it happens.

In March of last year I found myself totally blocked one night, no possibility at all of urination. A few hours after this started I began to get very alarmed and very uncomfortable so, in the early hours, off we went to the hospital and a catheter. That day was followed by a series of events where I found out I had low tolerance for a catheter, I was spasming almost continually and - boy - that HURTS. A new PSA test came back at 80 and that terrified me and I was subsequently told that a) the PSA meant nothing as the prostate was very traumatized by the catheter and b) I need another biopsy.

A month later another PSA returned the same score as the previous one did and a biopsy came back roaring positive, Gleasons of 9. I was immediatley placed on Lupron. A whole set of body scans, cat scans, drinking this and drinking that, more scans, radiation bone scans and I dunno what else later I was deemed clear and classified as stage 2. It was confined. Radiation was selected as the most appropriate treatment and off we went for the setup and measurements and everything that goes along with it. By December of last year, 2007, it was all over and my PSA was nicely down below 1. I had been on hormone therapy, steroids and other medications to help the process and I started to wean myself off of all these drugs, but the Lupron continued for just over a year.

The biggest issue by far was retention. I went through a two month period where I was unable to urinate naturally and I was taught to use a catheter on myself; self-catheterization. Unpleasant and at times painful, but it worked. The spasms I had experienced early in the year were still present but often not as bad. Eventually I was able to urinate tolerably well enough that I could dispense with the catheter for months at a time, but not, regrettably, completely.

There are times, such as now, when I cannot urinate enough naturally to get the bladder empty. Fits and spurts during the day does just enough to keep it empty enough, but nights are a nightmare; I have not had a good nights sleep for four nights now and I am beginning to feel quite bad. During the day I can go to the bathroom every hour or 90 minutes or so, usually feeling fairly uncomfortable at the time. During the night I am simply awake waiting for the next trip.

I am down to one pill, Flomax. The Lupron has been stopped and I take Advil when needed for pain. My testosterone is almost non-existent but should start returning in the next few months as the Lupron wears off - both my wife and I look very much forward to that! I can still function sexually but it is no easy matter and my manly proportions of yesteryear are much reduced, but I am assured that those too should return.

I was taking one Flomax a day before this latest crisis and doing okay. Three weeks ago things started getting bad and I went to 2 pills a day, this helped a lot. When I dropped back to one pill a day I was retaining once again and this time quite badly, so back to 2 pills a day; only this time the results are not so helpful and I am still retaining. I have contacted the doctor to see what his thoughts are but I do not know what to do.

The self-catheter still works and I use it in the early hours when things are bad, but the spasms are incredible and it takes a good hour to recover from the pain. I tend to avoid it for this reason and use it as rarely as possible, twice this last week, and the second time at 5:30 AM this morning. At 6:30 I finally fell asleep when the pain had subsided enough to let me.

I am wondering if anyone else has gone through this and had a similar experience, and perhaps knows that all will eventually be well, and perhaps knows how long eventually might be! I wonder if anyone knows of a way to handle these spasms; as much as I dislike the self catheterization, it works well enough and without the spasms could become a reasonable solution to a night's sleep. Are there other solutions or alternatives to Flomax, are there foods or drinks or supplements that can help getting the bladder to do its duty? I work-out daily, pretty much, and I think movement and motion helps; but days like these last are terrible and we are going to the beach for a week in early August - I confess to being quite worried indeed and any help would be gratefully received.

Thanks - Lawrence

[mike999]

Hello:

What were your PSA levels before & after each of your biopsies ? Did you have the % free psa measured as well ?

How many cores were taken for each of your biopsies ? I am somewhat surprised that you had 2 negative biopsies.

Thanks,

Mike

[Lymond]

Yes, it seems that a number of doctors I have spoken to were surprised about the two negatives, the first was 10-core and the second 12, as was the third. I do not recall the exact PSA but it was around 8 for the first and doubled at the second; sky-high for the third! I forget the free PSA which was tested when the PSA was 8, that all lead to the first biopsy. Prognosis is good they tell me and a full recovery is expected, with full functionality - here's hoping. But getting through the nights is a right challenge these days! And the days are a trial. Movement helps, exercise is good, but neither are enough. I have quit coffee - agony! and tea, no problem, and anything else that might cause irritation. I have tried antibiotics and been tested for infections even so - no joy. Is there anything that helps open up the bladder? Juices, powders, curry, rare oriental concoctions, pills from the pharmacy? Anything??

Thanks for your help,

Lawrence

[mike999]

Hey Lawrence:

I am a little further behind you on this journey...my PSA went from 3.6 in 2006 to 6.6 in late 2007 & has stayed there for the last 8 months. I had a first biopsy {16 cores} in 12/07 which came back negative....my PSA in April was still 6.6, I just had a second biposy {24 cores} last week.. I am keeping my fingers crossed..........

Cranberry juice helps drinking lots of water is probably the best.

Hang in there.

Mike

[Lymond]

I confess the thought of drinking lots of liquid is difficult to come to terms with, I want to pee less rather than more! Yet! My bladder aches so much and the burning and pressure and fullness, nearly all the time, perhaps passing more liquid would reduce the burning and that may help the overall ability to pass it in the first place! Could the burning be irritation causing swelling causing blockage? Reduce the burning and so improve the entire system? Maybe!

Cranberry juice eh? Like for kidney stones - of which I have had my fair share including one ghastly round with a lipthotripsy machine. I'll give it a shot

Thanks for your help. I wish you luck with your tests too, that is a lot of cores! One sure gets filled with holes during this blasted process - but the alternative is not worth considering.

Cheers and thanks again - Lawrence