Follow up from my previous post & many thanks to the helpful advice from members here.
I scheduled a teleconference with Dr Albert Chang at UCLA in November, scheduling is 3 months out so treatments were Feb.3 and 6. Normally a week apart but since I flew in they did 3days apart. We stayed at the Luskin Conference Ctr & hotel, 3 blocks north of the medical center. Can’t beat the location and there’s a UCLA shuttle that takes you back & forth. The UCLA staff was outstanding, everyone. I could write pages about it. Would love to work with people like that at my medical center back home. I mentioned Dr Kamrava’s name, they spoke highly of him as he trained there. Their website mentions epidural for the anesthesia but it’s now Propofol infusion with O2 mask, you’re out, very smooth. Takes about 45 minutes to place grid/tubes in the perineum, you awaken, get a quick CT & MRI, then to holding area for 30 minutes. You stay flat on the stretcher, can have all the juice & water you want. My wife was there, goes fast, then into the chamber for the treatment-music of your choice for the 20 minutes you’re in there, then they remove the 16 tubes & foley, and you’re done! Definitely pain with urinating the first 24 hours, relieved with pyridium/tylenol and 1 hydrocodone. Repeat 3 days later, that time no postop pain with urinating. One note, I was much more comfortable with the first session upon awakening, waiting, chamber, foley removal due to a touch of dilaudid intraop ( ty Dr Altenhofen!) than I was with the second session ( no dilaudid).
Flew home two days later. Had hesitancy & reduced stream for a week , stayed on flomax and went away. Was supposed to take flomax for a month but stayed on it 3 months as when I tried stopping, hesitancy and reduced stream would recur. No GI side effects.
Yesterday checked my first PSA, 0.8. ( was 7 at treatment). I really enjoyed the experience, crazy as that sounds, due to the doctors, PA, nurses, techs, even the secretaries. They were all so nice & friendly. Can’t recommend them enough. Dr Chang even had a few funny quips, which I always enjoy.
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Very interesting. I have not heard of doing it in two fractions a week apart. Now, in NorCal at UCSF or Kaiser, it's generally done in one hypo-fraction. 6 years ago when I had it, there were 3 fractions over 1.5 days, so I had to spend a very uncomfortable night in the hospital. Things have improved a lot. For those considering HDBrachy, it now looks like external beam high-dose SBRT is just as effective as long as the location of your lesions is appropriate for SBRT. I would have likely gone for that treatment if I could have 6+ years ago. Because my cancer was not caught in time, it had already spread microscopically, but the areas treated with Brachy have remained cancer free- so that part worked! Best of luck to you! Please get fairly frequents Testosterone (if you had any ADT) and PSA tests (ultra sensitive). Your PSA should continue to drop, though it might bounce around a bit for up to a year before hitting a "new normal". Always interesting to see what your lowest score (nadir) is. I always prefer more frequent testing because I want to know early if I have changes.
Thanks, Chang/UCLA have switched to 2 treatments of HD Brachy as they’ve found better results. I like the idea of Brachy radiation surrounding the cancer from the inside vs sbrt coming from the outside ( through normal tissue) into the cancer. ADT isn’t indicated for favorable intermediate. I’m a physician plus Dr Chang has a protocol for follow up PSA testing. He learned from and succeeded Dr Demanes , who may have still been at UCSF when you had yours.
I really hope that this note finds you well and fully recovered. Your posting on your experiences at UCLA with high dose brachytherapy is extremely insightful and greatly appreciated. Have the post treatment urinary issues now improved and, in retrospect, is there anything in preparing for this treatment, the mechanics of the procedure, or the post procedure follow up you would do differently? Profound appreciation for your sharing of your positive experience.
wouldn’t change anything, everything went as I’d hoped for- damn near perfect. Still taking flomax as my stream is fuller when I do, but am not bothered being on it for the time being. I did have one recent strange experience 6 weeks ago ( 4.5 months since treatment) I began having intense rectal aching while standing, relieved mostly with sitting, becoming more intense with each week. On my night call, I was up most of the night & thought I would go nuts if it didn’t improve. Talked with Dr Chang, nothing familiar about this ailment. Ibuprofen didn’t do anything, nor did topicals. Oh, doing Kegals helped while doing them but can’t maintain it; no effect with BM’s. Finally, I searched Inspire.com, similar prostate section like this. Some guy described something similar, he was convinced it was due to absorption of the space oar, but nobody believed that. He tried a medrol dose pack & improved. I decided to try it too, first 5 days, no change, then on day 6, voila! Started subsiding, then the next day went away. That was the 20th day since it started. Now back to normal and very thankful. Hopefully won’t recur.
Thank you again for your very thoughtful insights! Really hope the rectal aching has been cured. Extremely helpful for others to be able to know of the medrol dose pack potential treatment. Best for your continued recovery and a complete cure!
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