accuracy and outcomes with TrueBeam SRS treatment vs. Gamma Knife

[carriekartman]

I'm trying to decide between two teams and neurosurgery departments for treatment with SRS. The first highly regarded surgeon I met with at UCSF said Gamma knife was the best choice and what he would treat with, and to avoid the Linac based machine that Kaiser uses. He was quite persuasive, citing the superior accuracy of Gamma, but the bill to me will be high (over $65,000.) The latest Kaiser surgeon I met with (I have Kaiser coverage) was persuasive that the newest TrueBeam (a linac machine) witi Brainlab software is highly accurate, and a good choice. (By the way he trained at UCSF, so hmm, dissenting opinions even from that institution), I would not need to pay out of pocket for this treatment, but I want to make the smartest choice overall, for my health. I'm reading many articles about both machines, and am encouraged that UCSF, UCSD, UCLA, Vanderbilt, Sloan Kettering, and Mayo all use the TrueBeam (made by Varian). It seems that UCSF neurosurgery prefers Gamma, but their radio-oncology department is touting their TrueBeam treatment, and since both departments work together on our tumors, that's a bit confusing.

I'd love to hear your experience if you were treated with the Varian TrueBeam, and why you made that choice. For reference, my hearing is already very reduced so saving it is less of a concern than I wish, but vertigo has receded, and dizziness and balance are improving with PT.   

[DanFouratt]

I am not a doctor but I spoke with many in my process by surgery and oncology.  I choose CK.  I focused on CK vs GK, did not come across the Linac until the end of my research and did not come across the Varian. I believe they all to the same thing they eradicate your tumor.  Radiation sources change and the way they change the angle to deliver it is different by machine.  I never came across a facility that had more then one option.  I began to think after the hospital made a significant in vestment in one technology that is the one the believe is best. The reasons they chose machine "A" over "B" is what they share with patients.  Gamma was the first machine on the market hence in more locations then others. However many  procedures have been completed with the others with great outcomes..

Melanie if you are reading this a very useful expert topic would be to explain the different radiation options.  Since I have been here I think there is more confusion on this then anything else I read on this site and the local site.

[carriekartman]

Thanks Dan. Varian TrueBeam is a linac machine, as is Cyberknife (two companies with linear accelerator machines).  I agree that clinics tend to tout the one they've invested in, which makes it hard to get clear answers, but I was bothered by having two docs at two institutions known for expertise with our tumors (UCSF and House) tell me to stay away from any except Cyber and Gamma. Now TrueBeam seems to be in wide use. . .

[DanFouratt]

I hope Melanie reads this and helps us all wiht clarification of the procedures and options within!

I am very happy with my CK treatment.  In radiation they have a team look at the different approaches. They run simulations (1000s) and pick the one that is best. The team will include and the ENT Surgeon.  I very much respected my surgeon and that help make my decision as the team he was on was UNC medical.  Duke was good but I chose my surgeon. UNC had CK.   I did not have the surgery but still wanted him on my team.  We joked about how I made his job harder in the future. I come back with hopefully it will not be necessary. I will use the ENT for my follow up not the Radio Oncologist.

This is the note I wrote myself when doing research:

Both CyberKnife and GammaKnife use the same basic technology. They hit your tumor from many angles to concentrate the radiation at the center of the tumor and reduce the radiation at the outside of the tumor.  Think of a simple circle and you send a beam through each degree.  The center of the circle will see 360 beams where the outside of the circle will only see one beam per each degree.  Both systems are capable of delivering each of the above treatments.  GK is older in technology, uses cobalt 60 for its radiation source, secures your head in place with a wire frame and has multiple sources of radiation to hit you from different angles.  CK uses lineal accelerator for the radiation source, a mask for securing your head, a single source of radiation on a moveable arm to deliver radiation from multiple angles.   

I believe in radiation as a treatment as I really never missed a day in my normal life.

Good luck on your journey.

Dan

[donjehle]

Hi carriekartman!

I am not a physician either, but it is my understanding that various brain conditions require different types of equipment.  Acoustic neuromas do better with certain equipment than other types of brain tumors (and other tumors).  Many major medical centers have different equipment for treating specific types of tumors.  For example, proton beam accelerators provide amazing results for prostate tumors, and while they can be used for acoustic neuromas, my understanding is that the results are not as encouraging for acoustic neuromas as, say, Gamma Knife.

For example, when I had a consult with the Mayo Clinic, even though they have the TrueBeam, the specialists I spoke to preferred the Gamma Knife for my acoustic neuroma.  They have far more years of experience with it and far more positive results (since it has been around longer).

But for me, the greater question is NOT the machine, but the specialist you choose.  I would rather have a specialist who has done thousands of acoustic neuromas successfully on whatever machine he chooses rather than make a decision to go with a certain machine which is used by a specialist with less experience.  To me, the experience of the specialist far outweighs the advantages or disadvantages of the machine.

Just my two cents.

Best wishes on your journey!
Don

[DodgeAU]

Hi Carriekartman, this is my first time to hear about Truebeam. Seems like it is common in the USA. But here in Australia, GK or CK is the popular choice for radiation treatment for AN. I had GK treatment in Melbourne almost 2 years ago. It was the latest Leksell Gamma Knife Icon machine. Don is correct it's not only the machine that counts but the expertise of the doctors, oncologists and staff. It took me more than a year to decide which radiation treatment I was going to use. Need to be comfortable to both the machine, doctors experience as well as feedback from previous patients.

I am very happy & satisfied with the GK treatment after 2 years although I suffered a hemifacial spasms 6 months after treatment that lasted for about 9 months. It's all good now and just monitoring it every year. So far no growth after 2 years, there is actually substantial reduction in my AN size now.

All the best in your decision I know it is not easy - but you'll get there and keep us updated.

[carriekartman]

Thank you for all of these thoughtful replies. I've finally settled on a treatment plan with the Truebeam, exactly as many of you noted, because I'm impressed with the doctors who will be treating me, and because I was able to get two "thumbs ups" for the accuracy of the machine, from radiation oncologists a relative checked in with for me. After meeting with the radiation oncologist, who seems very knowledgeable and forthright, I wondered why we only meet with neurosurgeons when making this important choice. One of the selling points for me, was that he will do fractionated radiosurgery, which I hope will result in fewer side effects and radiation risks. 

[mwatto]

I had fractionated CK and really happy with my choice 5 years on no side effects. However the only reason I was offered fractionated was based on size and location. I know a few others who had treatment same clinic and much smaller AN only had one session.

[DanFouratt]

CArrie

I know this is a gap in time but I just watch the webinar below for another reason.  Thanks Michelle for sending it to me! When I was doing my research I did not go back past two years, this is from Oct 2020, so not in my date range.  I wish I had seen it before my decision, in terms of radiation treatments overview it was the best I have seen. Eben today, 3.5 years later it had information I was looking for and could not find. It is in the AN library.

https://www.anausa.org/members-portal/webinar-library/796-cyberknife-radiosurgery-for-acoustic-neuromas

It is worth the time to watch.

Good luck on your decision journey.

Dan

[mwatto]

Dan I thought the same! Was rushed into treatment in 2019  wish I had been a member then. Had almost no support at the time.

[carriekartman]

Thanks, and yes I watched Dr. Chang's webinar before making my treatment plan. I also got to attend a (Zoom) support group he was in; great team at Stanford! Too bad they schedule many months out. . .

[DanFouratt]

Good luck to you and let us know the outcome.

Take Care,

Dan