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retrograde ejaculation with proton beam therapy

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Posted 5/31/2009 3:57 PM (GMT -5)

Dear KeyWest:

Just a quick bounce back to your post.  I strongly agree with most of what you said including the critical importance of finding the best and most experienced practitioner whatever treatment one selects.   Also, given your stats, you almost certainly make the right treatment choice.

However, I must take issue with your comment about surgery that, "They either got it, or they didn't, and if they didn't, you can take it to the next level. If they got it, you're done."  The implication is that, after surgery, one knows for sure whether the cancer is gone forever.  Unfortunately, that is not true.  There are cases on this forum where the pathology showed clear margins, no lymph involvement, nerves spared and no apparant prostatic extension where later on, the PCa returned.  This is sad but true.  There are no guarantees and I wouldn't want a prospective patient to assume that post surgery pathology provides 100% knowledge and certainty, because it does not.

Tudpock


Posted 6/6/2009 5:07 PM (GMT -5)
RSilver, regarding your MGH questions...

First, sorry for the delayed response; been away from this forum for a bit.

I live in southern California and had the same issue with availability at Loma Linda - - great reputation and program, but just backed up to the point where they had no idea when I could even get on the waiting list.

I evaluated MD Anderson and U. Florida/Jacksonville, as well as MGH. My take was that they were all excellent, however I got more direct answers and contact with the actual people (doctors/nurses) who would be treating me at MGH, and their reputation and that of MGH was outstanding.

MGH took over the Proton program from Harvard Medical where it was invented. The facility is new and very accomodating to its patients. I found the procedure to be similar to what others told me about Loma Linda with some small variations. For example, MGH does not use the rectal balloon, and they do not use a full body pod for alignment, opting instead for some lower leg alignment props and the use of xray and ultrasound with every treatment to assure proper alignment (against some pin head sized tatoo marks made on my hips and abdoment during the pre-treatment preparation visit).

Overall, the care I received during the program was way beyond what were my high expectations - wonderful doctors, nurses, specialists, all the way to the administrative staff - -just tremendously caring people. Key contacts there are Dr. J. Coen and Dr. A. Zeitman.
Posted 6/25/2010 1:22 PM (GMT -5)
elsewhere jackjoe wrote:


Hi Everyone,
I just read a post by kpac and decided to reply. I just finished my Proton beam therapy at the Jacksonville, Florida center in December '09. I had the body cast and the markers (X) on each hip for accuracy. Each treatment started with X-rays to make sure the Proton hit its target. I don't know where kpac got his info but it is incorrect. Also, if you don't have gas you don't get the balloon. Of course, I had to get the gas so balloons for me, no big problem. That's why it is called the brotherhood of the balloon. (Protonbob.com) No surgery, no catheters, no ED, and no incontinence. I did anything I wanted and they recommend you workout at their facilities.
I had no side effects to speak of. I took Aleve and cranberry capsules during treatment and continue to do so. I do not have retrograde ejaculation and I do have ejaculate six months post treatment.
I highly recommend Proton Beam therapy. Check it out on the internet before making a hasty decision that leaves you wearing pads and with ED.
Best wishes to all and check out all options before making a hasty decision. Quality of life means a lot.



Alf
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