Cyberknife - when to travel or not?

[Tisha]

From everything I have been reading, I really think I'm leaning towards CK or hypo-FSR with the LINAC at Johns Hopkins.  However, I noticed that in my city, there is a Cyberknife center.  However, Dr. Chang seems to be such a leader that I'd be willing to travel to go to him.  Did any of you travel far to go the Doctor you read about (like Dr. Chang) or just go to the closest center to your hometown.  It seems that one would chose a doctor that had done hundreds of these, correct?

Tisha

[ppearl214]

Hi Tisha,

I stayed local.  I learned from Dr. Medbery that the CK radio-docs actually work with the OKC team (Medbery's team) for their actual CK training.  Stanford/Accuray does all back-end support. 

At the time of my CK, the BI CK center had been there for just over 1 yr.  I knew, based on my research, how the BI team was well-trained, although they had only done a few AN's at the time, that for me, I would be fine.  Now, over 2-1/2 yrs later, I have no qualm about being one of the first 5 AN'ers to be treated at BI.

We tout here "experience, experience, experience"... and that should definately be taken into consideration.  You will know which treatment (and center) will work for you.  Many from here that had CK will note their comfort level in choosing Stanford and completely understand why.

If you have the CK center near you, suggestion would be to inquire to them about the training and number of AN's they have treated... that should help you make the best decision you can for you.

Phyl

[Tisha]

Thank Phyl,

You are so helpful!  Sometime I think I know many details already about this AN and options, and then I just feel like I don't know anything, like with this latest question.  And then I feel stumped and silly.  You are right, I need to call and ask about the training and how many AN's they've treated.  But I know me.  I probably won't be comfortable unless I travel somewhere where they've done hundreds.  Plus, I guess it's an excuse to travel and get out of the midwest (smile).  Not exactly my dream vacation, though.  Thanks for taking the time to answer these "off the cuff" "on top of my head" questions I just zap along!

Tisha

[ppearl214]

glad to help, Tisha. Now, if you can find CK on a tropical island somewhere, that is where I'd want to be treated


I know you will do what (and where!) is best for you!  Keep asking questions... that's how you learn and become the best, well-informed AN'er you can be.

Phyl

[leapyrtwins]

Tisha -

just my two cents worth.

Although I had surgery, I didn't have it at HEI which is where some forumites will tell you is THE place to go for surgery.  Not to knock HEI at all, but I found a doc who was local and IMO he did just as a great a job as any doc @ HEI would have done for me.  In my situation, traveling wasn't a possibility from a financial standpoint, nor would my insurance company have paid for me to have surgery in another state when there was someone qualified to perform it in my "own backyard".

I think the same goes for CK.  Dr. Chang is definitely cream of the crop, but there are other docs out there who are just as qualified and will do just as good a job for you as Dr. Chang.  As Phyl said, Dr. Medbury is one of them.  I'm confident there are others.

IMO, and the ANA also says this, finding a provider who is qualified and experienced in treating ANs is the key here.  So as long as you find someone who isn't a "newbie" at CK, you should be fine.

Jan

[Nancy Drew]

Hi Tish,

I am three weeks post GK, and I had my procedure here in Denver.  The facility opened up four years ago.  My doctor has done about 80 ANs, and he was trained at Pittsburgh which is the same as what CK is to Stanford.  I certainly think it is good to check out the docs no matter where you go and find one you feel comfortable with.  I don't know about how it is with Stanford and follow-up, but I really like that my AN doc is here in town if I have a problem come up.  I have had two issues come up, and my phone call was returned in two hours.  I met someone on the board here who had GK at Pittsburgh, and when she returned home (she traveled from far away), she was literally "dumped" by her doctor at Pittsburgh.  She said she is having a hard time finding a local doctor to treat her post GK, and she is having some problems that need attention.  How does follow-up work for you guys who have traveled to Stanford for CK?  Best wishes on your journey.

Nancy

[Anomar11]

Tisha,
I'm at Stanford now, just had treatment number 1.  I live in Upper Michigan, and will fly home Sat after my last treatment Friday.  I too am a little nervous, but Dr. Chang anticipates no problem, said he's had people fly out right after last treatment.  I had no problems coming out here.  I had a difficult time deciding, and finally decided I was going to go where I knew they had experience.  We're lodging relatively inexpensively, which would be the same where every you go, unless you live next to a center.  I'm very pleased so far, please PM me with questions if you want.  For more info, look me in member log and read previous posts.  Mona

[sgerrard]

When  I got asked why I traveled to Stanford, when a new CK place had just opened across the river, I had to admit that the "paint still wet" aspect of a brand new place didn't sound quite right to me. Since then, I think I have come to realize that CK is highly automated, and with a reasonably experienced and trained oncologist at the helm, any CK facility will do a good job.

I have had good email and phone contact with Stanford, though, and I do like the depth of experience they have there. It is nice when the place you go sees your case as routine, not as a new challenge. As others have suggested, it comes down to finding a treating physician that you trust and can communicate with.

I do like Phyl's suggestion, though, of a Caribbean CK resort. 

Steve

[sher]

Tisha,
I had my CK at a newly opened Cyberknife in Salt Lake City... I was leary at first, but after researching the docs out and talking to Dr. M and Dr Daspit at Barrow's in Phx, they both knew the Dr's and assured me that they knew what they were doing. Dr Rogers has done GK for many years with Dr. Daspit and trained for CK with Dr. Medbury and Dr Reilly has been doing CK in Montana for the last 2 years. I am doing well and am sure that they did a good job for me. I was the first AN done in the SL clinic so I actually got several opinions when they treated me... so I feel assured that all is well.
I hope this helps...
Sher