Neurotomotherapy. Anyone experienced it?

[Ted A]

Hi All:

I am three years into watch-and-wait mode, but will need to treat my AN this year because it continues to grow steadily (recent posting in Watch-and-Wait section for details).

I have considered many treatment options, and favor some form of radiation therapy. There is a relatively new kind of radiation therapy available now called Tomotherapy (http://www.cancercenter.com/conventional-cancer-treatment/tomotherapy.cfm). When applied to the brain and spine, it is referred to as Neurotomotherapy.

Basically, the approach is to real-time image the tumor before precise doses of radiation are administered. Tomotherapy claims to (from above website):

- Sculpt small, powerful and precise radiation beams to hit hard-to-reach tumors
- Target tumors using built-in CT scanning to confirm the shape and position of the tumor seconds before your treatment begins
- Reduce radiation exposure to healthy surrounding tissue, often dramatically

Older, conventional forms of precision radiation (radiosurgery, stereotactic radiotherapy or fractionated stereotactic radiosurgery) include Gamma knife, X-knife, Cyberknife and Novalis. These techniques apparently adminster radiation based on a static image taken days or weeks before a new dose is given.

My neurosurgeon claims some experience with this technique (based in the Singapore).  I am curious, but a bit wary about new techniques that are not adequately field tested.

My questions to the group are:
- Has anyone tried neurotomotherapy?
- What was your experience?

Thanks for your help.

[ppearl214]

Hi Ted,

Thanks for sharing this with us... I did a "search" option here and didn't find any posts on it (unless I missed something)... upon further check, I do see that UConn and John Hopkins offer it, but am curious about end results solely as an AN treatment option.... in your research, have they put you in touch with other AN'ers to see how they did with it?  Seems pretty comparible to other forms of radio-treatments (ie: Trilogy, CK, etc) as it is also image guided.

Suggestion.... ask the radio-docs on the CK Patient Support board about their knowledge of it as well:

http://www.cyberknifesupport.org/forum/

I would also inquire directly to the ANA.... as the office has a lot of info pertaining to all forms of AN treatments. They may have info as it pertains directly this form of treatment and use on AN's. Their contact info is:

ANA
600 Peachtree Pkwy.
Suite 108
Cumming, GA 30041
Phone: 770-205-8211 or
1-877-200-8211
Fax: 770-205-0239 or
1-877-202-0239
Email:info@anausa.org 
 
I'm going to follow this as I'd like to hear/learn more about this......

Thanks again for sharing.
Phyl

[sgerrard]

Older, conventional forms of precision radiation (radiosurgery, stereotactic radiotherapy or fractionated stereotactic radiosurgery) include Gamma knife, X-knife, Cyberknife and Novalis. These techniques apparently adminster radiation based on a static image taken days or weeks before a new dose is given.

I haven't heard of it either. I would take Phyl's advice, and check with ANA and the Cyberknife forum doctors. There is also a Tomotherapy web site: http://www.tomotherapy.com/

The quote above is not a very good description of Gamma knife and Cyberknife. For Gammaknife, the scans are taken first thing in the morning, with a head frame in place; then the treatment plan is developed; then the radiation is delivered the same day, usually 2-3 hours later. For my Cyberknife, the scan was taken the day before treatment. The CK machine also provides real-time x-ray imaging continuously during treatment, to check your head position with the stored scan and treatment plan.

My question would be how much has tomotherapy been used for small tumors in the head, and is it well suited for that purpose. It appears to be designed for treating a wide range of tumors throughout the body, as are a number of other radiation machines.

As you find out more about, please post back, I would like to know what you find.

Steve

[Mark]

Dr. Medbery's response to Ted's post on the CPSG site re: "Neurotomotherapy"

Mark


Tomotherapy is less accurate than CK. They image before a treatment, but cannot account for motion during treatment like the CK can. There is no need to re-plan treatment during the three days of therapy since the tumor does not change in those three days. THe important issue is to be sure you actually treat the tumor, and only CK images during treatment to be sure. GK is very reliable also, because of the rigid immobilization, but probably has a higher chance of hearing loss and requires frame placement.

Neurotomotherapy is a made-up term and has no basis in medical nomenclature.

CK is available in several locations in your area. Seek it out.

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

[ppearl214]

Thanks Mark for posting Dr. Medbery's response... interesting.....

Steve, thanks as well....terrific input and and yes, for me, the key was the image guidance during the procedure.....spot on, as the bloke would say!

Phyl

[HeadCase2]

  I took a quick look through the www.tomotherapy.com site.  This is a linear accelerator combined with a CT scanner.  In looking through the Users Presentations on the site, there was one related to head an neck cancers for a doctor at UVA.  And that presentation did not mention Accoustic Neuroma.  It sounds like this machine hasn't been used much for AN treatment.  It's not clear that this machine would provide any advantages over CK, which has an extensive history of treating AN.
Regards,
  Rob   

[Ted A]

I am back with more information regarding CK vs. Tomo.....

In my initial posting, I asked for information about NeuroTomotherapy, a relatively new platform to deliver radiation therapy. I also posted the same query at the CyberKnife® Patient Support Group, as recommended by Phyl. Mark also posted Dr. Medbery's reply. Thanks to you both.

As a patient, I am looking for objective information. Dr. Medbery helpfully responded to my posting, giving more favorable opinions of Cyberknife and Gammknife. I have little reason to question Dr. Medbery’s professional opinion. At the very least, it probably reflects his vast experience with Cyberknife.

After that posting, I consulted with my doctor, and (anonymously) offered Dr Medbery’s opinion. He offered the following paraphrased comments:

•  The site you mention (CyberKnife® Patient Support Group) is a company sponsored site (Accuray) monitored by doctors with an interest in CK.
•  CK uses simple X-rays to check on patient position while the NeuroTomo uses multislice CT. The difference is huge.
•  NeuroTomo is not less accurate than CK. 
•  (Accuray) is trying hard to integrate CT with the CK but are having problems.
•  I use a lot of treatment platforms and I can tell you that NeuroTomo is currently the best out there

Obviously, there is a difference of opinion. My impression is that both opinions are useful and somewhat biased. I have no way to know which is more objective and accurate, or which therapy is better suited to my situation. Few facts were presented to back the respective claims, possibly because they are considered too technical to be described in the discussion forum. 

Professional opinions are not necessarily objective, but reflect the bias and the experience of the doctor. This is acceptable. Truly objective information is hard to find in any discipline.

As a side note, the theme of my postings at this discussion forum has a common thread, reflecting my AN experience with many doctors and radiologists since 2005.
1. Two ENT doctors didn't consider AN diagnosis even though I had asymmetric hearing loss. I had to insist on an MRI which proved it.
2. Three radiologists over three years apparently missed the fact that my AN was growing. A forth provided detailed measurements to confirm a steady and significant growth rate.
3. Two doctors recently offered very different opinions on a new radiotherapy treatment. 

The take away message is, all we can do as patients is consider as many professional opinions as possible and as practical before getting comfortable with one and choosing a particular course of action.

Thanks for your help and interest.
-T

[sgerrard]

Hi Ted,

Interesting comments. Here is my slant on them.

 Some of the confusion, or whatever you want to call it, arises because of the difference between treating an AN specifically, versus treating a wider range of tumor types. Certain features and benefits don't necessarily apply to ANs. I think that for some tumors, especially in the torso, Tomotherapy may well be better.

The first comment about Medbery being a CK man made me chuckle; he has said the same thing about the Wake Forest Gammaknife website. I don't think Medbery would deny having an interest in CK; I think he likes it because it works for his patients.

As I understand it, Tomo uses CT "just before" treatment begins. CK uses x-ray during treatment. In my case, the CT and MRI were done the day before the first treatment. For monitoring the position of a skull, x-ray works like a charm, and is still the only imaging I know of that is done during radiation treatment. It is however less effective in this respect for the torso.

I suspect that Accuray's interest in integrating CT has to do with using CK on the rest of the body, not to address issues with treatment of brain tumors. Tomo may be the best overall, but is it the best for treating ANs specifically? 700 ANs treated with CK at Stanford alone suggest to me maybe not.

I agree with your theme. If you talk to only one doctor, you are unlikely to get the whole picture. Although ANs and their treatment are important to us, many ENTs, neurosurgeons, and radiation oncologists spend most of their time on other conditions, not ours. We must pursue matters ourself, and find out all we can.

Who knows for sure? Maybe NeuroTomo will turn out to be the cat's pajamas for AN radiation. Keep on keeping on...

Steve

[Mark]

For Ted's benefit , and more importantly for his doctor who sadly, but not surprisingly, is misinformed and speaks boldly of something he does not know, the CPSG web site was developed by a member of the Cyberknife patient support group and is to date , financially supported by the group ( I should know because I currently function as the treasurer and write the checks  ) The doctors donate their time and have no ties or receive anything from either Accuray or CPSG. As I've posted previously, the financial support of maintaining the web site may be reassigned to Accuray in the near future as CPSG is disbanding and it was felt that the popularity of the web site dictated it be continued in some form

Mark

[HeadCase2]

Hi Ted,
  As you're finding out as you look into AN treatment options, there are several potentially effect treatments out there, but few absolutes.  It's both good and bad that there are several accepted AN treatments.  It's good in that you can find the treatment that gives your particular case the best chance for the best outcome, taking into account AN size, placement, reported complication percentages, remaining hearing on the AN side, etc.  The bad part is that it's not always obvious which one should give you the best outcome, and there is a lot of information to go through.  Even the doctors don't agree.
  One approach that you might consider is to look into some of the studies reported in published medical journals regarding the outcomes of the various AN treatments.  These articles are generally vetted by a review panel of experts in their field, so there may be less "opinion" and more data backed up actual results.  You have to come up to speed on some of the medical terminolgy commonly used reqarding AN, but the more you read the easier this gets.   This is not for everyone, and some of the articles can be heavy reading.  But it does help with perspective on the various AN treatments, and published (rather then verbal) complication rates.  And it can give you perspective on if there is reported historical data on a particular treatment option, or if it is fairly new with less reported research data.  You can do some of this research online, but you can run into articles that you can't access without fees.  An alternative is to use a medical library at a teaching hospital, which are generally open to the public.
  Good luck with your research.  As you find out more I hope your best treatment option becomes more obvious.
Regards,
  Rob

[Ted A]

Thanks for the useful replies. My recent note, also posted on the CPSG site, was (unintentionally) provacative. The doctors at CPSG (Medbery and Spunberg) were very professional in their response, and provided resources to support their position. Thats all I can ask for. Good show!

http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=21301#m22252

[MaryBKAriz]

Hi Ted,

I thought this process is mind boggling. WOW 

My best advice - when I was deciding, and I have seen it said before, is to go to numerous doctors that have treated MANY ANs. My doctor has done over 700 surgeries for it and hundreds of radiosurgeries. As I questioned different people at different centers, all but one agreed radiosurgery was the way for ME to go, CK more often than GK. It helped me immensely to hear from many AN centers. Some really seem to favor one way over another.

Each time they said a preference, I would ask them why, how many AN's have they done and how many of the different types. I would ask statistics of side effects and the comparisons they get for AN's. Some of those got one doctor answering quite unsteadily. he is trying to start a new center, I think. (why in Phoenix I don't know with BNI and Mayo both here, already). I did not want to be his guinea pig. The center I am going to has seen patients from all over the world for AN's. There are a number of different centers around the country that do that. This all may apply to what you are already doing and experiencing. I just thought I'd put in my 2cents about what worked for me. Everyone is different so I think you need to do what you feel is best for you. After the decision is made, and your treatment (or watch and wait), do not second guess your decision. You did your homework.

Take care and good luck with finding your best path.

Mary