proton beam vs cyberknife

[hevreh]

Living in MA where MGH has its proton beam center, I am considering treatment there. Was told by a chief radiation therapist who attends professional conferences that if it were him, he would choose proton approach. I am impressed with cyberknife too and the therapist says it is a close second. Either choice would be good. With more fractionated treatments one would assume lesser radiation exposure. The merits of proton vs photon also appear superior if one has the time. Anything I don't know that I don't know??!! Has anyone out there probed the details? Also am interested in post-op benefits of one approach vs the other. My AN first diagnosed a year ago at 1.5 cm has grown to its current 2.0 cm and at this rate of growth, watchful waiting seems unwise. Am noticing developing symptoms too. Any thoughts, ideas, suggestions?   

[ppearl214]

Hi hevreh and welcome

Well, Proton at MGH is a good choice and I can think of 3 users here, off the top of my poor brain that could be of help.... stoneaxe, tsl and elliemae.  Hoping they chime here soon to give better insight into the program there.

I had CK at Beth Israel in Boston and am doing well... 3+ years since treatment, have retained all of my hearing (for what it was at the time of treatment) and doing fine.  Many CK patients here as well, so I have a sneaky feeling they will chime in as well.

Big Metro Boston/New England contingency here and please keep an eye in the "AN Community" forum for our NE Apple Dumplin Gang brunches in Worcester. Next one will be in October... would love to have you come join us.

Again, welcome
Phyl

[stoneaxe]

Hello Hevreh,

it's been a long time since I did my research (5+ years) but I chose to go with proton for its precision. I received a single dose since my tumor was small, 6mm, but I was already experiencing symptoms. The data available at the time all lead me to believe that I would get a more targeted dose of radiation from the proton than from other methods. I would need to do more research with current data to know just how true that is. I've come to think that there may be some sales along with the science when you see different docs that use different methods. When you go to buy a car and you are at a toyota dealer he's not going to praise chevy's even though they are both cars.

Not to scare you but as it turns out I'm one of the unlucky few (very, very few) for whom radiation didn't work. I'm actually scheduled for surgery next week. I don't think this should sway your decision...it usually does work. The decision making is often the hardest part of the journey for AN patients. Talk to more docs without a bias if possible. Give the info time to blend into what will be a comfortable decision for you. Then get it done and move on with your life. Despite the wrenches these things try to throw into the gears life can still be very good.

Best of luck with your decision,
Bob

[tsl]

Hi Hevreh,
I was treated at MGH in November 2007 with Proton Beam.  I sent you a personal message going into detail about my decision.

My first MRI following the treatment (1 year later) showed that the tumor had increased in size.  The Drs. believe that this is a result of the treatment (which was to be expected--they said) rather than true tumor growth.  I'll be having another MRI in November.

As for after effects, so far I've been fortunate.  Some fatigue initially.  In the beginning I found that I'd get occasional  minor headaches when I was overtired. Regular ibuprofen easily took care of them.  That's it.

Making the decision as to treatment type is so very hard.  It gets more complicated when you get conflicting opinions.

If you have any questions that I can help with, please let me know.
-Theresa (tsl)

[Mark]

Dr. Medbery's comments on Proton radiation based on the results published directly by MGH, from the 2006 forum archives

Mark

Probably the best proton series is that from the Massachusetts General Hospital. THey reported 5 year control rate of 94%, probably slightly inferior to Gamma Knife and CyberKnife. They also reported a disturbingly high rate of complications:
3.4% required a shunt for hydrocephalus
Serviceable hearing was retained in only 33% of those with hearing prior to treatment
about 10% had facial nerve dysfunction
about 10% had facial numbness or other trigeminal nerve dysfunction

Protons probably give more inhomogeneous treatment, possibly relating to the higher complicatioin rate. We would not expect to see those sorts of problems with GK or CK. MGH commented that complication rates would be lower with a lower dose, but did not report any real data, and they already have a marginal control rate.

I would get CyberKnife or Gamma Knife, and would favor the former.

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

[elliemae]

Hi, Hevreh
As all have noted, it's a very personal decision, with a lot of factors to take into consideration.

After a great deal of reading and research, including Dr. Medbery's opinions and advice, I went with the fractionated proton therapy last Nov/Dec.  So far, so good!  We shall see!

I've PM'd you with some more in-depth info!

Elaine