My first post - PCa diagnosed - looking for advice on HDR BT

CJ, it sounds like you've been doing everything you needed to do so far. I can't speak to practioners in your area, but I"d like to offer my welcome and know that we're with you wherever your journey takes you. I'm coming up on 9 months since RALP and doing great.

Hi Hitch.... My first post too, but you can pretty much see my journey in my signature. Dr. Carter at JH performed my 'open' RRP surgery and so far, I'm doing pretty well nearly 3 months out. I was 51 when diagnosed, and since I was 'bilateral' I wasn't a candidate for the AS program at JH, even though my other numbers seemed to fit the bill. As Dr. Carter is in charge of the program at JH, as well as the director of adult urology, I went with his recommendation for surgery. When I asked about radiation treatments rather than surgery at our post-biopsy meeting, he stated that I was a bit on the young side for that treatment, as there's the potential for other side effects that, if I were older, I'd probably outlive. I believe he mentioned urethral and bladder cancers, and others, as possibilities. I know of the whole 'surgeons recommend surgery' thing, but I, and even more so my wife, wanted it out.

To each his own, and I understand that, but I'm OK with my decision---well, now that it's over, LOL!. My incontinence is minimal. Actually, mostly only a 'squirt' when doing something stressful and forgetting to take it slowly and prepare, and my ED issues seem to be coming along pretty well too (thankfully, my nerves were spared). I just have to get my wife on board, LOL!!!

Good luck!

can't offer advice on your tx, but do want to extend a warm welcome to HW and best wishes for successful tx to both Hitch Hiker and MD native!
Beth n Gary

Welcome hitchHiker. Sounds like you've got a lot of the decision making done and just need the right Dr.
If you don't get any names in response to this thread, I would suggest you look for a post, any post, by Tall Allen, and click on the envelope under his name. That will allow you to email him directly, he's usually quite active here but is off the forum more or less for the month of November. He'll likely have some good suggestions.

Hitchhiker, I've done a lot of research into HDR monotherapy. A lot. I've also spoken with Martinez and Ghilezan in the Detroit area and Dr. Kamrava at UCLA, all HDR experts. I'm not aware of any renowned HDR treatment centers in your neck of the woods. You may need to travel to get it, so Detroit might be your best bet.

I don't know how to make links turn blue here but here is the link you can copy and paste to find the contact info for Martinez & Ghilezan: http://www.21stcenturyoncology.com/physicians/martinez-alvaro-a

Here is the link to Dr. Mitchell Kamrava, who will do a free phone consult with you after getting all your medical records: https://www.uclahealth.org/provider/mitchell-kamrava-md There's a link on the UCLA website to initiate the phone consult procedure. See the link in the far lower right hand corner: http://radonc.ucla.edu/site.cfm?id=418

After doing my due diligence with HDR, I learned that the permanent side effects associated with it are about the same as with SBRT. So I'm now investigating SBRT as it is less invasive and available in my area, unlike HDR.

Good luck!!

Ken said...
IIRC, Memorial Sloan Kettering in New York does HDR Brachy. Am uncertain as to how much history there is.

I had a consult at MSK. They do HDR Monotherapy, infrequently. More frequently, when they do HDR it is part of a combination therapy. Maybe relevant, maybe not, and I am not trying to say they are not capable, but if you're looking for a center that specializes in HDR Monotherapy then MSK is probably not the choice.

Works Out said...
More frequently, when they do HDR it is part of a combination therapy. Maybe relevant, maybe not, and I am not trying to say they are not capable, but if you're looking for a center that specializes in HDR Monotherapy then MSK is probably not the choice.

Thanks for your input, I have been beginning to wonder that about Duke. My consult there for intitial diagnosis is about two weeks away.

It'll be one year next month that I had HDR mono. Two sessions, two weeks apart. All is fine except for reduced semen output during sex. And it's pretty significant. It doesn't bother my wife and my nurse said it was preferable (she just said that during my checkup 😜). That's something to get used to though. I have some mild ED, but take a half of Levitra.

My next PSA is in a month.

Thanks for all of the great info so far gents! I've been dealing with an elder care issue for part of this weekend so I apologize for not being near a keyboard as a result.

InTheShop, yes I'm considering SBRT. HDR-BT is basically the first iteration of hypofractionated prostate cancer treatment, which is what SBRT is modeled on. SBRT, or "cyberknife" as it is affectionately called, still uses photons for treatment, as opposed to PBRT which uses protons. I'm an engineer so the theoretical aspects of protons interest me. I do like the less invasive aspects of SBRT or SRT, but the limitations of photon based RT and the damage to surrounding tissue always concern me. HDR BT, while a bit more invasive, does not introduce as much radiation since it does not pass through other tissue. At least this is my current assessment. There are certainly trade-offs no matter which option we choose, it's really "the best of the worst" when it comes to choosing any one treatment plan.

NativeMD, glad to share in our mutual introduction to HW! I'm glad you are well on the road to recovery. I've also heard the same info from urologists (surgeons) about longer term secondary cancer risks, and this was indeed true many years ago prior to the advent of much more targeted RT options. More recent 10-20 year stats for more targeted RT shows very little statistical differences in bladder or rectal cancer rates for RT patients as opposed to general population cancer stats. At least this is what my research has shown me over the past few years.

Fox Chase is one of the few centers in the Northeast known for HDR BT and for RT in general. FCCC was the first to do HDR BT in the Northeast region actually. FCCC has been doing HDR BT, IMRT, IGRT, SRT, SBRT for many years now. Dr. Horwitz, Chair of RO, is who I've been speaking with. Anyone in the northeast and in particular, in the Philly metro area who is looking for a center that has good prostate cancer experience, here's a link:

https://www.fccc.edu/cancer/types/prostate/index.html

Here's a link to Dr. Horwitz:

https://www.fccc.edu/physicians/team/rad-onc/horwitz.html

WorksOut and DCD55 thanks for all of the info and links, I will check them all out and let you guys know what I find. I'm not opposed to traveling anywhere if it's the right thing to do, the way I look at my situation is, once and done, and I want it done right by those who have done it so many times it's almost second nature.

Horwitz at FCCC has been doing HDR monotherapy since Y2K, and has several hundred under his belt from what info I have gathered - waiting on actual stats to be delivered to me now to be sure. Basically FCCC moved from LDR to HDR in Y2K and only does LDR under certain specific cases where HDR is not a good match. I'll get more info on stats and share them with you all here. FCCC has an entire dedicated suite only for HDR BT, which has MRI, ultrasound and CT dedicated all in the same small space specific to HDR BT procedures. I saw the suite when I last visited - so they have made the investment over time. More to come as I learn more. Scheduling for HDR-BT is 3-4 months out at FCCC right now - to give at least a possinle indicator of the volume.

Paul65, thanks for chiming in! I had my fusion biopsy at NIH just last May, with Dr. Pinto, who trained the entire staff at JH on the fusion software and procedure. If you have any questions, I have firsthand experience with the fusion biopsy procedure.

WorksOut, specific to FCCC HDR-BT, it was two procedures, seven days apart, two fraction RT treatments each day - so four total fractions over a seven day stretch. I believe there were other fractions available - but this is what FCCC recommended for my specific case data.

Dewayne and WorksOut, thanks for the HDR specific treatment experience data. This is what I'm looking for most of all, folks who have had HDR-BT and their outcomes and experiences. So thanks again.

Keep the great info coming! I will keep sharing what I learn under this thread as well.

HH, that first link doesn't work. I'll try again.....

https://www.inspire.com/groups/us-too-prostate-cancer/discussion/side-effects-hdr-monotherapy-seems-to-have-the-least/[url]

As was mentioned, I had HDR five years ago. It has exceeded my expectations for both effective cancer control and low side effects. I don't have any side effects from the HDR. Thus, I am a strong proponent of the procedure. It has several advantages over permanent seed radiation and surgery in many cases.

I think the best information is at www.cetmc.com, the website of the father of HDR Brachytherapy, Dr. Jeffrey Demanes, now head of the department at UCLA Medical Center.

Please let me know more specifically how my experience can help.

Jack

stockpeeker said...
Dewayne, did you have Dr. Rossi do your HDR? I'm scheduled for 2 sessions this month so wanted to see what you can tell about the procedure and short-term side effects and discomfort/pain. I also see that you had a problem with an anal fissure; was that following the HDR?
Regards,
Steve in Atlanta

Steve,

Yes I had Dr. Rossi perform my procedure last December. He is very good, in my opinion.

Anal fissure - This was caused on my biopsy by another urologist at Emory. He was a new doctor, and had to call in a veteran for assistance. I recall the veteran dr. saying first, "let's put some more lubricant here....". It went misdiagnosed as hemorrhoids for four months by three PCP's; and I finally went to a gastro doc. It had nothing to do with the HDR.

My first procedure was different in that it hurt like a you-know-what when they pulled the catheters out. It only lasted for a couple of minutes but it was a 10! The second one was no pain. I think it might have had something to do with the anesthesia methods. I let them know though. And there was hardly any pain the second session.

Short term issues: It hurt to pee for a couple of days. The urgency to pee lasted a couple of months. Blood in semen the first time, and then it was brown for the next couple of times. And then, nothing (no liquid) for a couple of months. Once off the Flomax, the liquid came back but it's never the same. There was a couple months of pain after ejaculation, from like months 4 - 6. Sex is still great but there's a different feeling at the end because of that.