ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: chloes mema on January 26, 2012, 06:02:03 pm
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Has anyone had Novalis Radiosurgery? If so, how did it go?
This is the procedure my doctor suggested for me IF it comes down to having to do something. She gave me an informative brochure and I did find info on the net. Just curious if anyone has experienced this.
Karen
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Karen,
I had never heard of Novalis before you raised the issue before. However, a review of the UCLA website on Novalis makes it sound almost identical to CyberKnife, e.g. fractionated doses, the manner in which it delivers radiation to tumors, etc.
Richard
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Richard, I got the impression it was like a hybrid of CK. The thing that the doctor stressed and reading about it is that CK is done with "round" rays hence can radiate tissue outside of the tumor where Novalis follows the exact shape of the tumor and (supposedly) doesn't radiate tissue outside of the tumor. I'll have to go look that UCLA site. I only found sites for Novalis here in Tampa which looked like commercial advertisement sites.
Karen
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The way the CK works and Novalis works is quite different.
While both machines are more than capable of "killing" the tumour, if your goal is to preserve your hearing, Cyberknife may have an edge especially with small tumours.
The flexibility of the robot in CK allows the radiation to be delivered from more positions.
Dosage to the cochlear can therefore be reduced potentially saving your hearing.
Novalis can shape the beam with the Brainlab attachment but the advantage here is with odd shaped tumours, which AN's typically are not.
http://www.ncbi.nlm.nih.gov/pubmed/21892741
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paulw
hmmmm....interesting :o
what you're saying is almost opposite of what the doctor told me which gives me more reason to do more research. she said the tumors are NOT round, square, or triangular they have odd shapes. she said the novalis has less likelyhood of damaging surrounding area which now leads me to have to do more research. went to yesterdays support group meeting where several people mentioned that the doctors are in this for money so do your research!
i followed your link, took a screen snap of the page then did a little more research which leads me to having to do a lot more research. i've started a folder called questions for doctor so i will add this information.
i'm not a medical person so i really don't know enough about it other than what i've been told and read.
reading the brochure i was given states "...shaped beam radiosurgery is a 3-d stereotactic irradiation of small intera cranial targets with greater accuracy while minimizing the absorbed dose in the surrounding tissue..."
bottom line is i'll do my research and hope to heck i never need to put any of it to the test. ;)
karen
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Paul
Thanks for sharing this link. I had not seen that one before and appreciate you sharing it. The last statement of the abstract is the key:
"Further evaluation of these findings in prospective studies with clinical correlation will provide actual clinical benefit from the dosimetric superiority of CyberKnife."
Karen
The goals of most of the radio-technology is the delivery of the radiation with keeping surrounding normal structures as impact-free as possible. This is not always possible with any of the radio-technologies but they try their best. One of the keys in choosing radio.. .and in line with what I just shared is "total" accuracy of the delivery of the radio-beam. Novalis is known to have a "total margin of accuracy" of approx 2mm. GK and CK have a "total margin of accuracy" of approximately 0.85-0.89mm, thus, the slight edge that GK/CK has over Novalis. There is recent discussion that CK may have a slight more edge of "total margin of accuracy" over GK but very very close to call.
Hope that helps.
Phyl
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Its not just the accuracy of the machine, but also how it works.
The Novalis machine is restricted to applying the radiation in a 2 dimensional arc.
This creates restrictions on where the radiation can enter the patient and therefore avoiding organs at risk becomes more difficult in the treatment planning.
The Novalis machine by applying the radiation in arcs also creates hotspots in the middle of the tumour.
The flexibilty of the robot in Cyberknife gives it the ability to "cross hatch" or paint the tumour with radiation rather than treat in arcs.
Novalis/Brainlab, can shape the beam to match the tumour shape which helps offset the restrictions of the machine.
But as most AN's are "Capsule" shaped in the IAC and largely spherical outside of the IAC the advantage of shaping is not as great with AN's versus other types of tumours that are more oddly shaped.
It is well documented that radiation to the cochlear will cause deafness.
The increased accuracy and "dosimetric superiority" of Cyberknife maybe beneficial for hearing preservation.
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Paul
Luffs ya dearly! :) As you and I have both had CK (My treatment almost 6 yrs ago)... I will only add this as this discussion is geared for inquiring of Novalis (still a very viable treatment option for AN's)...... regardless of radio-protocol, most radio (except GK although experimentation was being done for fractionation of GK by Dr. Georj Noren out of Providence at last check) are also done in "fractionated" (ie" broken up over numerous days.... trying to keep things in laymen terms around here to help make it easier for many to follow along) to help with lower impact of surrounding structures to help keep edema (ie: swelling) at a potential minimal for hearing preservation. This is applicable, not only for CK, but also Novalis, Proton, Trilogy, etc.
In my case.... fractionated CK (done over 5 days) saved 100% of my serviceable hearing at the time of my treatment (as of last hearing test). I was part of the CK Hearing Preservation case study that came out of Beth Israel Boston - Dr. Anand Mahadevan and team (for those that know me well, you'll be able to identify my MRI image ;) ) for hearing preservation and yes, I was one of the 100% hearing preservation.
Karen,
Please remember that "individual results may vary." We don't sugar coat things around here but try to share experiences, medical info (as Paul has beautifully done as do so many others) and info that we can to help you make the best, well-informed decision you can for you and your unique situation. These forms of radiation/radiosurgery are definately viable treatment choices for AN's and keep asking away. Paul and so many others here are terrific resources...... and your gut will help guide you to what will be best for you.
Hang in there!
(Paul, thanks again! :) )
Phyl
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Thanks all, for the good information. This is why I posed the question. Need to learn as much as I can. Reading on-line and pamphlets leaves my head spinning more than it normally does. ;D
More things to consider and look up. Sorry but to me none of the options sound like fun and heaven forbid you choose the wrong option. :-[
Ok, so I guess back to the drawing board, as they say, but now I have more tools to draw from.
Karen
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More things to consider and look up. Sorry but to me none of the options sound like fun and heaven forbid you choose the wrong option. :-[
Karen
I guess its like any medical ailment in life. Cancers, tumor growths, pills for acne and psoriasis (and pills for this and that), ortho surgeries, etc. Its up to us to be our own best patient advocate to learn and try to make the best decision we can for our own unique situations. I have multiple ailments (my AN was a "hiccup" compared to my other ailments) and I've had to sit back, learn what I can, ask questions and then..... take a big step back, take a deep breath, sit down with pro/con list and try to make the best decision I could for my situation. Honesty... IMO... for any medical ailment in life and trying to choose a treatment.... it's a crap shoot. My gut lead the way... I followed my gut... and in my case... it paid off.
I know you are learning all you can... and its ok to take a step back and take a deep breath... many of us do so... and you are certainly allowed :) It's a lot to absorb so trying to deal with all this info the best way you can can be difficult.... but your gut, I have a sneaky feeling (yep, my gut :) ) will lead the way for you and the best choice for you. Regardless of what you do, we are cheering you on!
Hang in there!
Phyl
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Thanks, Phyl. Every time I think I'm gaining ground it seems to slip out from under me but it's slipping less and less. I feel like I'm whining sometimes on these posts but truly I'm not, just confused which is normal. Thank heaven I have time to research and get my ducks in a row. ;)
Karen
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"All the above" is one of the reasons I decided to have surgery instead of radiation. I decided I wanted pin-point accuracy, and surgery was the only way to get it. There were other reasons also, but I sort of felt like the doctors were playing horse shoes...who ever comes closest...wins. I asked lots of question and got lots of conflicting information. Ask the doctors about these issues and do not rely on the opinion of people here who are not doctors. I was offered Novalis and found info online that it was more accurate than CK. It was on the Novalis website about 2 years ago. I am not telling you how to be treated. I am telling you to get the info from doctors.
James
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Ok, so I've spent about 45 minutes doing research on-line and the only negative thing I could find was an ANA forum posting from 2006. I wonder if we're all talking about the same thing here. Novalis Shaped Beam Radiosurgery. I found a posting on the UCLA site that states it's better than GK. Mt Sania Hospital had a posting that says it's better than both GK and CK. I'm still going to do further research, compose my questions, and go armed to my next doctor's appointment. I want to thank everyone for their informative input. ;)
Karen
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"All the above" is one of the reasons I decided to have surgery instead of radiation. I decided I wanted pin-point accuracy, and surgery was the only way to get it. There were other reasons also, but I sort of felt like the doctors were playing horse shoes...who ever comes closest...wins. I asked lots of question and got lots of conflicting information. Ask the doctors about these issues and do not rely on the opinion of people here who are not doctors. I was offered Novalis and found info online that it was more accurate than CK. It was on the Novalis website about 2 years ago. I am not telling you how to be treated. I am telling you to get the info from doctors.
James
Hi James! :) I hope you are doing well! :)
As a public/online discussion forum, the goal of this patient-to-patient forum is to share experiences and info that we gather over time. You are certainly correct in your statement (that I have put in bold above) but..... these experiences and info we, as patients, gather are important tools in patient research as well. Doctors see us for minimal amt of time... we are the ones living with it 24/7. So, yes... doctors imputs for each unique AN journey is vital... no question about it.... and yet... patient referral/references are as well.
Thanks for sharing what you have.... also very valuable info! :)
Phyl
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Hi Phyl...and yes, I am doing great. The point I was trying make, and I probably did it poorly, is you cited the accuracy of CK vs Novalis based on your knowledge of the two systems. We talked about this 2 years ago, and I found information on line that countered what you were saying. I still do not know which one is correct. You had radio treatment and I had surgery, so your info about radio is more informed than mine, but there is still the doubt in my mind about which one is better/safer/more accurate, etc. I have NO experience about their qualities. All I wanted to do was inform Karen to get the info from someone...like a DOCTOR that is qualified to quote facts that are current...than from one of us. You are more qualified to inform her of your experience with radio treatment, which sounds like it turned out well for you, and lots of others on this site, but I care to believe a doctor is more qualified to explain the accuracy of the equipment, how it is applied, etc. You may be currently up to date on Novalis performance data vs CK. I would just rely on the doctor who is sitting at the controls and is trained and is currently using a machine that is current and has all the up-dates.
I can relate my surgical experiences, but I can not tell anyone that the doc should have used a #6 drill or a jumbo auger or any other surgical tool, because that is not my experience. I can tell her about how I felt before the surgery, after the surgery, etc.. I can tell Karen to ask LOTS of questions...that is what I did. I can tell her to listen to people like you and your experience. I listened to YOU a lot when I first logged in here...your info is top rated and I love your supporting love and kindness. You were and still are one of my heros here, so don't take this in a bad way. Talk about your great outcome from CK, but leave the equipment/accuracy to the docs.
James
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Sometimes the argument on accuracy of the machines can become a little meaningless.
At the end of the day its about how much good tissue was spared from the effects of radiation, while giving the tumour the required dose.
Machine Accuracy is only one part of the puzzle when it comes to sparing good tissue.
Software versions, Power of the beam, CT Scan, and MRI accuracy, Merging CT and MRI's, patient positioning, size and shape of the beam, size and shape of the tumour, Patient movement, head frame flexing, movement of organs, radiosurgeons preferences on treatment, experience of the radiosurgical team... even your brain moves in your skull..
So when comparing the machines, to look at mechanical accuracy is a little simplistic.
The radiosurgeons goals is to kill the tumour and to reduce damage to good tissue as much as possible.
This is why I quoted the paper that I did. It was current Feb 2012, and demonstrated that Cyberknife specifically for acoustic neuromas appears to have a significant advantage over Brainlab/Novalis for sparing good tissue.
http://www.ncbi.nlm.nih.gov/pubmed/21892741
The Novalis/Brainlabs ability to modify the beam shape to match the tumour shape, does have advantages.
And if you compare Cyberknife to Novalis/Brainlab on a large odd shaped, aggressively growing tumour, the result could be different. One machine is not necessarily better than the other for all tumours.
I hope that goes some way to explaining why there is conflicting information about the machines.
Nobody should ever take advice on public forum as being accurate.
Healthy debate is good.
It will encourage people to investigate further, so they can come to their own conclusions and treatment choice.
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Thank you. You all HAVE given me plenty to think about and consider. I can see research and question assembly in my future. For sure, the final answers will have to come from the neurosurgeon; hopefully, I won't have to use any thing except W&W for a long time. ;)
Karen
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I do not know very much about this type of equipment, but I was in the Air Force years ago, and all of the planes I worked on had different hardware changes to the equipment that was installed when they were built just to keep them up to date. Not all of the planes got the same modification, so they all operated in some different fashion. We did not have modern computers in the planes back then, but I imagine that modern planes get hardware and computer up dates to keep them up to date, or to change their purpose in some manner.
I would suppose that all of these radio machines get updated time to time, and that might be an issue to factor in. Perhaps UCLA might have a more updated machine than some other hospital. Might be worth asking.
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James, now that's a "thought pattern" to follow up on. Having retired from the software industry I should have thought of that. ??? thanks.
Karen