Knowledge is Power

Welcome to HW.

Good to hear from you.

Do keep us updated on your progress,
Andrew

Thank you for the welcome Andrew. It will be a month until the fiducials go in...wish we could start already, however I understand the HT has to get going before the IMRT.

sheepguy; this is what I learned...
Carbon Ion Rad http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598788/
C-11 Choline PET https://www.youtube.com/watch?v=co4FIkDHsJc
Dr. Marks MRI/Biopsy https://www.youtube.com/watch?v=7GHTVNAQLKo

Yep, familiar with all those references.

JoJola T.A. HAS A LITTLE WRITE up on page 2 carbon ion GOOD LUCK ...NEPOL

JoJoLA said...
P.S. I wish there was an expedient way to get men to push for MRI focused Biopsies. It is a crime to see young men get blind biopsy after biopsy getting negative results only to get dx later having missed the opportunity to get it early.

Well put, and am already on the track attempting to book at this time.

Welcome to the forum

Thank you Ken,
Really, I don't see the point of getting a blind biopsy. Yesterday, I listened to an audio podcast on the subject (Tall Allen was on panel) and the Dr from the UK said they have been doing the MRI focused biopsies for years there and he said the USA was way behind on this front. Sad really!

Welcome JoJo! Good luck with your tx at UCLA. I have found that with my DH, being comfortable with his medonc has made him much more accepting of all the awful tx he has had to endure. He accepts everything the good Dr tells him, and I do the research and ask questions.
Sheepguy, I also take Enbril for RA,but started with Humira and get remarkable result. Have your friend check into the RA section on HW It's not as active as this one, but many of us post regularly about using biologic.
Beth

Tall Allen
He described all options including SBRT. I wasn't aware that he had the clinical trial on it at the time. However, I was concerned about getting all the surrounding tissue. I did express some concern about this with SBRT and my husband asked what he recommended with his "high risk" cancer and Dr. King said IMRT. I hope we made the right decision and I didn't sway his recco. Knowledge is Power, however a little knowledge, which is where I am..is, well you know...Dr. King said 67% cure rate.
I really would like to go to Germany for the carbon ion...90% cure rate, lessened SE's.

celebrate life,
Your DH and Michael_T are so young...breaks my heart. Thank you for sharing your wisdom.
Like you celebrate life, I am the researcher, and question asker. Which goes in the face how we let this PSA rise get away from us. I added on a garage and deck last year, and of course started with the architect and county planners the year before, and I didn't notice that DH didn't get his annual physical in '13 & '14! His GP retired and I didn't get a reminder. DH is seen every 3 mo by Rheumatologist Dr. and 2x year by heart Dr. (just for blood pressure) plus he had numerous dental appointments for an implant, and I just let it slip. Besides researcher and question asker I am the chief nagger. I noticed that he was getting up to go to the bathroom and I could hear the reduced stream and I would question him about it and he would blow me off..."I'm fine". After months of this I remember yelling into the bathroom "This is not normal!" and as usual he told me to lay off. Well it hit me like a ton of bricks...why am I nagging him about this? Just make the darn appt for him. So I got him a new GP and he was seen right away. I was shocked to see the PSA rise and what he told me the Dr. felt on the DRE. That was July 27th and I have shepherded his you know what all over town to get on top of this at whirlwind speed. He feels bad that he let it go, and after the 1st shock has worn off, the guilt I feel is starting to fade.

Michael_T...As Elon Musk says about his daily drive from Bel Air to Torrance "It is soul sucking." We are hoping for an 11am or noon daily appointment to cut the drive each way to 50 min vs 2 hours each way during commute hours, which for the 405 in the afternoon starts at 2:30pm!!! I have noticed that from the Getty down to Wilshire it seems to really clear up since the construction/widening. The 101/405 remains the worst in the country however...

JoJoLA,

Dr King's high-risk protocol is experimental, and I can certainly understand why that might make you uneasy. But his goal is 85% biochemical control (the same as carbon ion) for high risk. If you are concerned about not enough "overspray" from SBRT, you should have even more concern over carbon-ion, which has essentially none. Dr. King does IMRT on the same machine that he uses for SBRT - TrueBeam with RapidArc - and he sets the high-risk treatment margin at 5 mm with both. The big difference is 40 treatments vs 5, but also intra-fractional motion tracking (with SBRT) vs only inter-fractional motion tracking (with IMRT). The greater use of motion tracking avoids radiation "misses" that hit the bladder and rectum and cause toxicity - most would view that as a benefit, but I can see that you seem to view the lack of dose to those "organs at risk" as a problem. I can understand that if you, for some reason, believe the cancer has already spread to those organs, you would want to treat them, whatever the toxicity. But, if it were me, I would want evidence of that (Stage T4) first from an MRI.

Here's an article that discusses SBRT monotherapy for high risk patients:

SBRT for high-risk prostate cancer

If you don't want an experimental protocol, the standard-of-care that has reported the best biochemical control is a combination of brachytherapy and IMRT. This puts a much larger dose inside the prostate capsule where it is most needed, and a lower dose to surrounding tissues so that it does less damage. This is the kind of therapy that Michael_T and JNF had. You can get this at UCLA as well. Dr Kamrava will be taking over for Dr Demanes, who is retiring soon. Demanes reports 86% biochemical failure-free survival for high risk patients treated with this combo therapy.

There is also the possibility of using HDR brachy as a monotherapy (without IMRT) because HDR (unlike LDR) can treat an area outside of the prostate. This is experimental and there is a clinical trial at Stanford to explore this new use. You can read about it here (this article also discusses the combination therapies):

HDRBT monotherapy in treatment of high-risk prostate cancer

One nice thing is that you don't have to go to Japan or Germany to get these therapies.

Tall Allen,

You know Tall Allen, I feel at such a disadvantage in discussing DH case because the Dr's have not shown us the MRI's, bone scans etc in detail for me to make a case for one treatment vs another in specificity. My nature is to "see the film" and have them make the case in detail. However, that is not how the system is set up...so all we can do is accept their best judgement. This is fine for the husband but it is very unsatisfying for me! My scribbled notes from Dr. King are as follows;
PSA 6.7
Rt side near periphery
SM 0
LN 0
Bone 0
Small spot left clavicle and left 8th rib; old injury? HT will confirm if shrinks.
G9 All cores High Risk
BTW my notes say IMRT for 9 weeks...

Lots to digest in your reply...however this sounds good!
"There have been several pilot tests of IMRT with an SBRT boost to the prostate in high risk patients. Lin et al. reported on 41 patients. The 4-year biochemical failure-free survival was 92 percent, with a mean PSA nadir of 0.05 ng/ml."

Also, please explain if you will, the difference between intra vs inter ..."The big difference is 40 treatments vs 5, but also intra-fractional motion tracking (with SBRT) vs only inter-fractional motion tracking (with IMRT)."