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SBRT #1,HDB,#2,LDB #3

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Posted 12/27/2015 5:02 PM (GMT 0)
Hello All,I have come to a mind set of primary treatment options.As my Uro suggested either surgery or a IMRT combo.His group does both in house.Here are my choices if I am a candidate in each of them.

1.SBRT,still looking local,or Barnes Jewish in St.Louis
2.HDB,a visit with a RO at University of Chicago,late Jan.as they dont do SBRT
3.LDB,a visit w/DR.Brian Moran mid Jan.

I have Aetna open access,HMO,and they have limited knowledge on SBRT so I have to keep the petal to the metal on them.Staying in network is what they say.Dr.Jeffery Demanes,HDB, in Oakland seems to take Aetna.So if i had to travel to get the very best,I might have to.As there are other names for SBRT I will have to keep that in mind when searching.Any comments or Dr. choices will be of help.SemperFi
Posted 12/27/2015 6:10 PM (GMT 0)
Personally, I think that is the correct order. We hear so many good things about SBRT that in your place I'd be pushing that route as hard as I could.

Having said that, we hear a lot of good things about HDB too.

You're doing great research!
Andrew
Posted 12/27/2015 6:56 PM (GMT 0)
Jeff Demanes was at UCLA, not Oakland. But he retired, and Mitchell Kamrava is doing all the HDR brachy there now. You have Alvaro Martinez in Detroit - one of the pioneers of HDR brachy, and certainly the top of the field.
Posted 12/27/2015 8:50 PM (GMT 0)
I think you're on the right track with your three options. I don't know enough to rank them but with the downgrade of your biopsy I'd think that any of them would have a very good chance of curing you.

FYI, I had Kamrava for my HDR brachy and was very pleased with him. And if you're traveling UCLA can help with housing/travel arrangements. But it also looks like you have some good closer options.
Posted 12/28/2015 12:32 AM (GMT 0)
Dr. Moran is one of the very best LDR guys in the US and probably the world. SBRT and HDR are also very good options. Sounds like you have done your home work and are on the right track.
Posted 12/28/2015 12:42 AM (GMT 0)
311, where are you located?
Posted 12/28/2015 3:36 AM (GMT 0)
Hello,Im located 40 miles south of downtown Chicago.Im looking into all the major hospitals as we speak for SBRT.Just an insurance priority now.And even when I find an institution I hope the quality of experience is there.I guess you have to put faith in someone at some time.Im still the glass half emty sort of guy.All you guys been here.You know the mind games this process is. In a way these days are getting better for me as i can see the trail that I will take soon.The initial shock is over.Finding the primary therapy is almost there.Really if it wasnt for you guys I would not have a clue.And Ive only been with HW since October.It seems like a life time.I feel blessed.Thank You all so much.
Posted 12/28/2015 11:54 AM (GMT 0)
I'm not criticizing your choice, but I am curious as to why the multiple sessions (isn't it 40?) would be preferable to the one (LDR) or several (HDR) that are the case with brachy?
Posted 12/28/2015 1:28 PM (GMT 0)
Hello GOP,the IMRT is the up to 40 sessions of RT.My Uro suggests that.I dont want that procedure if I can help it,nor do i want surgery at this point. My first chioce is SBRT about 5 sessions,or,HDB about 2 sessions,or LDB seeds implanted.I will be interviewing the Drs in each of these procedures soon.Thanks
Posted 12/29/2015 1:28 AM (GMT 0)
Understood.
Your approach is excellent, and and I'm sure that you will find the treatment that is effective and comfortable for you. Like you, I wanted nothing to do with surgery and did my research until I found a treatment with which I was comfortable.
Best to you.
Posted 12/29/2015 10:36 PM (GMT 0)
SO pleased to read this thread 0311, I was starting to worry!

You nailed it my friend... take the rest of the day off turn
Posted 12/30/2015 12:29 AM (GMT 0)
Heck, take the rest of the YEAR off...
Posted 1/4/2016 1:01 AM (GMT 0)
Thanks for the advice,as I did take some time off for the holidays.But the mind is always thinking.Tomorrow is Jan. 4th,2016 and I will continue to seek out the best primary therapy.I want to get this part of the journey behind me.It will be a busy schedule as winter is upon us in the midwest.Radiation and snowblowers what a combo.
Posted 1/7/2016 4:18 PM (GMT 0)
0311, I'm in St Louis and have also pretty exhaustively researched the treatment options. I, too, have opted for SBRT with HDR monotherapy a close second.

If a person is a candidate for both SBRT and IGRT, the research indicates that, so far, there is no proven benefit in terms of cancer control or lower permanent side effects for the 40 treatment IGRT versus 5 treatment SBRT. But for those opting for IGRT, I believe there's a very recent study showing that 26 treatments are just as effective as 40 and will become the standard of care.

In StL, there are 3 SBRT options to my knowledge: St Louis Cyberknife, where I'll be getting treated in March; St Louis University which has one of the first generation Cyberknife machines from 2004, I believe, when it started being used for other cancers; and Mercy Hospital which uses one of the competing machines. I don't believe Barnes-Jewish offers SBRT.

Siteman Cancer in StL, which is affiliated with Barnes, offers HDR monotherapy in one 19 Gy fraction per Dr. Hiram Gay. In other words, you have one day of treatment, and you're done (hopefully). I met with him last fall. He had done about 30 so far and was doing about 1 per week. Most insurers will apparently cover this procedure, which would be very convenient, but I balked due to the absence of long term data (the one and done is still considered experimental at this point) and some phone consults with some HDR Mono experts, including Dr. Alvaro Martinez and Dr. Kamrava, who thought the one fraction treatment was too aggressive for my situation.

Lots to think about, and the insurance angles can add another level of headaches. Good luck!!
Posted 1/7/2016 6:32 PM (GMT 0)
Thank you from all of us for going the extra mile and researching these modalities.I meet with the SBRT Doc tomorrow,first one,Dr.Su at CyberKife Center of Chicago.There was another member that i talked to recently from St.Louis and was treated at Mercy by a women RO,first class,gave him patient referals etc.Why are waiting till march? With G6 you have time.Me G7 3+4 i want to get it done.Keep us updated on your adventure.Today Tall Allen posted the 9 year study on SBRT.Good stuff.Good Luck,John

Post Edited (0311) : 1/7/2016 3:01:38 PM (GMT-7)

Posted 1/7/2016 6:47 PM (GMT 0)
John, you're welcome. Can't tell you how much I've learned from the wonderful posters here and how much I appreciate their insights and wisdom. The many docs across the country with whom I have spoken by phone have also been extremely kind and helpful.

I also emailed with the StL poster who had SBRT at Mercy. In the end, after talking with Dr. Alan Katz in NYC maybe 8 weeks ago, and learning the results of his 9 year follow up, I opted for the CyberKnife machine. (I saw Allen's post today.)

All docs with whom I've spoken, and it's been at least 8, have recommended treatment over AS due to the number of positive cores (5), the bilateral cancer, and my strong family genetics. If there were some non-invasive therapy with a great track record for control and side effects which was on the verge of being FDA approved and covered by the insurance companies, I'd wait. But there isn't. So I'm proceeding. (BTW, my twin is hoping to get enrolled in the FLA trial in Bethesda, but that's not an option for me as I don't meet their eligibility criteria.)
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