I've made my decision!

[sloxana]

Well, after much research, sleepless nights, many doctor's visits, I have finally decided what to do about my tumor!  I bet you can guess what I decided because of what category i posted this topic in - that's right, I decided to have it zapped!!  Seriously, I feel a tremendous burden has been lifted from my shoulders after I made my decision.  Now I need to decide what kind of radiation: CK or Novalis?  The Novalis is what my neurosurgeon here in Nashville recommends but from what I am reading it sounds like CK is the most accurate.  Is this true?  There is not a CK treatment center in Nashville so I will probably have to travel to Knoxville or Atlanta.  If anyone has experience with either of those centers please let me know. 

I'm going to wait until after the first of the year to start my treatments.  There is just too much going on in my life to start them now so I prefer to wait.  My doctor will do another MRI in January to check to see if it's grown. 

Now I feel I can get on with my life.  The last 6 weeks have been really hard.  Thanks to all of you who volunteered such great information while I was trying to decide.  You all have been such a big help!

Susan

[Sue]

Yeah for you Susan!  Get that puppy nuked!  The decision has been made and I'm sure it will all go according to plan and you will be on the road to recovery soon.  Best of luck to you.

Sue in Vancouver

PS
I've been awaiting my "super powers" because of being nuked, but so far they've been slow in coming. Let me know if you get any.

[Mark]

Susan,

For my money, CK is a clear choice over Novalis.

From Dr. Medbery on the CPSG site in response to a patient

Could I get some information regarding the benefits of Novalis vs. Cyberknife for a AN of approx. 1.9 cm. The last doctor I saw touted the benfits of Novalis over Cyberknife, and now I feel a bit confused!


Novalis is an accelerator based system that achieve accuracy of about 2.5 mm. We don't feel that is accurate enough for critical brain work, although it is often used that way. You have to decide for yourself whether to accept the lower accuracy (compared with 0.89 mm for CyberKnife). In other words, they could either miss 2.5 mm of tumor (13% the diameter of your tumor) or treat 2.5 mm of brainstem, cochlea, or other critical structures.

Mark

[sgerrard]

Susan, doesn't it feel good to decide? Congratulations.

Here are some links on CK you might want to look at.

The Cyberknife site locator shows two centers in Tennessee, one in Knoxville, one in Bristol.
http://www.accuray.com/SiteLocations/index.aspx

The Cyberknife support group has a forum, and also lists several CK doctors you can contact by email:
http://www.cyberknifesupport.org/

 I posted in another thread that Dr. Medbery, at the link above, said in a post that any CK center can do a good job on ANs. He is in Oklahoma, maybe you could even go there?

You could also look into Gammaknife, there a GK center in Knoxville as well, among others. If you are waiting until January to do the zap, you will have time to check them all out and take your pick.

Steve

[Craig]

Susan,

You should consider meeting with Dr. Cmelak at Vanderbilt University. I live in Nashville as well and he did my treatment in April. I was also considering the Novalis system and CK in Knoxville. I also spoke to both doctors about their treatment. It is your decision but another opinion would not hurt.

Cheers,

Craig

[ppearl214]

Susan, doesn't it feel like a monkey off your back? OMG, once I made my final decision, the stresses and weight off the shoulders was overwhelming for me..... glad you are on the road to finalizing what is best for you.  Hang in there... we're cheering you on.

Phyl

[BeJoi]

Congratulations, Susan.  Just making the decision feels so liberating.  I knew from the start that, if I didn't have to have surgery, I was going to go with radiation.  I've just completed six weeks of radiation on the Trilogy system.  Was it as accurate as CK?  I don't know.  My radiologist quoted 1 cm or less when we discussed it.  I chose to spread out the treatments to hopefully preserve the hearing I have, and to have a better chance of zapping the AN cells as they were replicating.  Apparently, according to my radiologist, they're only susceptible to radiation when they are in the process of splitting or replicating. 

So far, I feel great.  I was very stressed during the treatment, mostly because I had to be at the hospital at 6 am every morning.  And my energy was very low from lack of sleep and stress.  But now, three weeks later, I feel filled with energy and enthusiasm for life again.   Only time will tell if my AN (which started at 1.9 cm) shrinks or stops growing.  But, I'm happy I chose radiation.  I really like my radiologist--he spent time with me every week answering all my questions and showing me anything I wanted to see.  The radiotechs were very supportive--although a little too cheery for that time of morning. 

Good luck with your final decision.  Whatever decision you make, you have to feel it's the right one for you.  You have time to research all you need and to meet with doctors who can answer your questions.   

Beverly

[Betsy]

Hi Susan!

You sound so happy!  I'm so glad you've made a decision you feel good about.  Taking that step can help relieve a lot of anxiety.  It will be even better when you know what kind of radiation treatment you're having and can put the appointment on the calendar!

Best wishes to you,

Betsy

[mhs]

Craig
Are there any long-term studies on the Trilogy?  I believe Emory and VUMC have just had it since 2004, but perhaps it was around before then??  Does the accuracy to around 1mm compare to CK?
mhs

[sloxana]

Thanks for the good wishes everybody.  And of course thanks for the info about CK, Novalis and Trilogy!!!

Sue....you are so funny!!  I'll let you know if and when I get my "super powers"!!

xoxox to everyone,
Susan

[BeJoi]

I just want to correct one thing in my last post.  It was 1 mm, not 1 cm, in terms of accuracy for Trilogy.

[Mark]

I'm not sure if Trilogy really has a total error capability of 1 mm which would suggest it is comparable to CK / GK for radiosurgical applications. I think Trilogy may still be too new to have any clinical studies but if any body knows of one perhaps they can post a link.

Machine makers toss around a lot of numbers about their accuracy and it is important to understand what they are referring to. The machine accuracy, in fact, may be 1 mm, but total accuracy involves the error in the CT scan or frame plus the machine so it tends to be slightly higher. the .89 mm quoted in the clinical study that came out on CK reflects total accuracy, not solely machine for example. The fact that the Trilogy protocol is 28 days which matches the standard for Novalis and other radiotherapy LINAC machines suggests to me that it doesn't have the same accuracy as GK / CK, but that is merely supposition on my part.

I know Craig was very pleased with his trilogy experience at Vanderbilt and thinks very highly of it. I think the jury is out on it until some of the medical centers using it publish  peer reviewed studies to validate it's accuracy level. Attached is a link to an exchange that occurred between Craig and the Drs Spunberg and Medbery where they offered their perspective on the two machines a while back. I have generally found both those guys are pretty straight shooters and don't "push" an agenda even though they are on a CK patient supported site.

http://www.cyberknifesupport.org/forum/default.aspx?f=16&m=11064

Bottom line is I think they are all (CK / GK / Trilogy) reasonable choices in experienced hands, but I'll hold judgment on the accuracy assertions on trilogy at this point.

mark

[BeJoi]

I want to clarify what I know about Trilogy, and that is that it can be used for a single shot, a few days, or as I chose, a 28-day treatment schedule.  I purposely chose the 28 days because, frankly, my intuition told me that I needed to do more than one or a few days of any radiation treatment.   I do not know for sure if I'm correct about what the Trilogy can be used for, but it is what I remember being told.   

One question I do have is how can anyone really tell how accurate a particular machine is, since MRI scans are not even 100% accurate in their measurements of the tumor?  What verification is 100% reliable for any of the radiation treatment modalities?  And how is that really measured?

I guess, as I watch the evolution of my MRI scans over the next couple of years, we'll be able to see if the entire tumor was covered by the radiation (via areas of necrosis) or if there are spots that look like they weren't hit by the radiation.  I can't think of another way anyone would be able to measure with 100% accuracy how on-target the radiation is.

Beverly

[Betsy]

Hello,

Trilogy has only been out since 2004 or 2005, so there isn't as much data out there as I'd like, however my radiation doc was able to quote me some numbers.  He said that the accuracy at that site is generally within .5 mm, which is comparible to GK (Trilogy does the one-shot deal as well as fsr).  However, on a "test head" (probably on a cadaver head), the accuracy was .02 mm.  That was one test, and I'm not sure if that's due to the capabilities of the machine or the skill of my radiation doc (or the fact that it was a cadaver head).  I have a lot of respect for Dr Medbery, but I'm haven't read anything that says Trilogy accuracy is 2-3 mm.  I wonder if that's for non-brain radiation treatment, with the image guided technology?  ANs tend to stay put; they don't move around as we breathe, and that seems like it would be an easier target to hit.

On a side note, the Trilogy unit uses a multi-leaf collimator, or something like that, to shape the beam to match the tumor.  It looks a LOT like a woodworking tool my Dad used to use!  I like technology I can understand.

Betsy

[Windsong]

I've read about trilogy and picked up this:

it's faster, can deliver more rads in less time in a smaller  targeted dose area
it is said to produce less side effects
it can use image guidance  in real time each day  of treatment
it can target an area as small as a pencil point
it minimizes damage to healthy tissue

when used it can deliver all forms of external beam radiation including IMRT, IGRT, SBRT... etc.

it combines good things from linac, ck and gk .... but what I think i picked up is that it's faster, higher doses can be used, it is more accurate, and it can be  used with conformal beams shaping it most closely to the tumour and giving less to surrounding tissues

it also has "respiratory gating" with the breathing of the patient....

if you want to google  sites then simply type trilogy + radiation treatment and you will get lots.......


here is one of the many that i read.....
http://www.umm.edu/news/releases/trilogy.htm

W.