No CyberKnife from this RO

Hello all,

Today was the big day. I decided against RP after weighing all the facts. That left RT. So after looking at the different types SBRT stood out. Less side affects and less time completing the process. I was excited.

I met with Dr. Samir Narayan. He is one of the RO's at St.Joeseph Mercy Health System in Ann Arbor Mi. I was excited to have him as my doctor since one of his specialties is treating the prostrate. A well spoken man that was confident in his profession gave me a big sigh of relief that I was in good hands. He was very polite and thorough. He went over my biopsy and did another DRE.

Then came the news that I didn't want to hear. He said that he would not recommend SBRT. He said that my Gleason score was too high. I asked if he would reconsider knowing that was what I wanted. His answer came back as a resounding NO.

He then went on to explain what he recommended as treatment. He wants me on HT for 4-6 months to be started before IMRT. IMRT would be for 44 treatments. Or instead of 44 i would be given 25 treatments with HDR Brachy somewhere along the line. HT would still be required. He also gave me the option of LDR Brachy and 25 IMRT treatments. He won't use any fiducials. Is that the protocol?

He also wants me to do a bone and CT scan.

Some would refer to this as "the triple play". Am i wrong in my thinking that this would be more suited for a Gleason 8 or 9? Is this an overkill? I am more worried about the HT more than anything else. So what is the worst part for those have gone through this. Any Gleason (4+3) here that have had this and can comment?


Alan

P.S. A special thanks to Tall Allen for providing a list of questions about CyberKnife that I didn't get to
use.

Alan-

As I always say, you can only get reliable information from specialists about their own specialty. I don't think UMich even offers SBRT, so how would he possibly know? That's just plain silly that your Gleason score is too high, as I personally know several men who have been treated with SBRT with scores that high and higher. In fact, UMich's former head RO, Howard Sanders, is now head RO at Cedars-Sinai. He brought Zach Zumsteg over from Memorial Sloan Kettering to take charge of Cedar's SBRT program.They definitely treat men in your risk group with SBRT - a man in my support group just finished last week.

I know that UMich is closeby, and you would like to be treated there. But I urge you to continue investigating.

I may be wrong because I haven't explored it, but I don't think UMich does HDR brachy. You would have to go to Detroit for that, I think. The situation is a bit different for LDR brachy than for HDR brachy because HDR can treat an area outside of the prostate while LDR brachy (seeds) cannot. That's why he's telling you that even for your 4+3 intermediate risk, you would need external beam (EBRT) along with the seeds. That's very reasonable and appropriate. What they found in the ASCENDE-RT randomized clinical trial was that among intermediate-risk men, their 7-yr progression-free survival was 94% if they had the LDRBT boost but only 80% if they had only external beam radiation. Cleveland Clinic, which treated intermediate risk patients with LDR brachy monotherapy, reported 5-year progression-free survival of 81% for their "high intermediate risk" group, which would include you. So, to summarize for intermediate risk men:

LDR BT + EBRT - 94% progression-free survival (7 yrs) (ASCENDE-RT)
EBRT monotherapy - 80% progression-free survival (7 yrs) (ASCENDE-RT)
LDR BT monotherapy - 81% progression-free survival (5 years) (Cleveland Clinic)

Now, there is a cost for the better oncological outcome -- the risk of toxicity is higher with the combination therapy.

Your other radiation options include HDR brachy monotherapy or HDR brachy boost (talk to Alvaro Martinez about both of those options). For SBRT, all you need is a monotherapy.

Alan - I can't speak for all CyberKnife centers, but one that I have visited (still choosing who will treat mine) actually now has a study going on using CK for intermediate and high-risk patients. We joked about whether I should be called low or intermediate risk and added to their study just to skew the results. Only a joke, though.

I know it would be a trek, but if you are committed to CK, contact Dr. Arica Hirsch at the Lutheran General Hospital Radiation Oncology department. She is the director and is conducting the study.

P.S. I can sympathize with how you feel when you were told "no." For me it isn't the fact that my request is denied. It is how they do so. For me, lack of tact when dealing with a patient is a potential deal breaker.

I am one of the high Gleason guys Tall Allen referred to, G9 (4+5).

To my knowledge the only 3 high Gleason SBRT centers are Dr. Chirs king at UCLA who did mine, Dr. Allen Katz in NY and a group of doctors in Toronto named Sunnybrook if I recall. You can do a forum search on screen name Houseboy who used the latter.

I had my SBRT in conjunction with Provenge in October 2014 with no adverse side effects so far. My PSA remains undetectable at <0.01 ever since.

The Patient Access Foundation helped me out with $5,000 in travel reimbursement since I live in west central rural FL but was treated at UCLA for SBRT and Prostate Oncology Specialists for Provenge administration.

Nomar, I am looking into SBRT or HDR monotherapy, and am curious about your UCLA experience. I live in Michigan, so at this time my insurance would not cover UCLA, but I also feel that they have one of the best HDR programs around. Did your insurance cover UCLA, or if not, what kind of arrangements are available. Also, how did you qualify for the travel reimbursement money?

Thanks all for the replies. Sorry for you that are struggling.

* Tall Allen I have not investigated U of M. They do not do Cyberknife. I am currently in consultation at St. Joe's Mercy Hospital in Ann Arbor, MI.where they do. This is where I was denied SRBT.

I have since discovered another provider. Their name is "Phoenix Cyberknife and Radiation Oncology Center".
Their equipment is the newer Varian Truebeam and Rapidarc. As i understand it, multiple types of EBRT can be performed with this machine including Cyberknife. So if I need other forms they can do it. They also do Brachy.

So yesterday I called them and they requested a copy of my Biopsy report. I sent that along with a list of questions about Cyberknife that Tall Allen provided me. I will send them results of a 3t-MRI and my Bone and CT scans when completed. Interested to see how they will prescribe treatment. If their opinion of treatment mirrors that opinion at St.Joes then I have decisions to make.

Traveling and staying in Phoenix is not an issue. We have a 5th wheel and could find a campground nearby. It would be nicer to recoup there than here.

Alan

Tall

LA is still in my scopes. Dr. King is well renowned. Tampa is still an option too. Md Anderson in the Houston area is another I may consider. I still would like to get a 2nd opinion in Phoenix, Arizona first.

Al

P.S. Tall please check out The web site at "Phoenix Cyberknife and Radiation Center" I value your opinion.

Post Edited (Alan) : 9/17/2016 12:13:03 PM (GMT-6)

I don't know except the web site looked good and the head of the department Dr. John Kresl is well thought of. The reviews of patients treated there were good. Let's see how they answer the questions I sent. I also liked the fact that they treated with other EXBT besides SBRT.

Al

I sent them in with my biopsy report. I see your point. Let's see how they respond.

Why would a good RO not respond?

Too busy with normal consults?

A sign that they are trying to bring in patients?

Not enough information from the stuff Alan sent them?

Thanks,
Trentazoid

Trent-

I agree with Paxton. Doctors are very much aware that emails are cutting into their billable hours. Some won't respond to emails at all anymore. Patients should respect that they are busy, and must make a living just like the rest of us. Emails, when sent, should be very short and only needing a short reply. Also - those items were meant to provide a discussion that will inform the the patient. They are not all short answer questions.

Any doctor answering them by email has WAY too much time on his hands, and is really doing the patient no benefit. The only acceptable answer would be "let's talk about this when you come in."

Don't write off email yet. Several of my doctors are members of various practice groups that have web sites that contain "patient portals." Through these portals I am able to carry on secure (encrypted) email correspondence with my doctors, and only with my own doctors (the others in their groups do not see my communications). The portal sites send an email to my conventional email account directing me to look in my portal account for new email, test results, appointments, etc. I find these portals to be very practical and functional for my needs, and they usually get me quicker responses than trying to ask questions by telephone.