Newly diagnosed - CyberKnife or Proton Therapy

[TSS]

I consulted with a neurosurgeon who possessed signifcant experience and respect;  he told me that if it where him he would go CK route.  I sense he did not always have that view only recently (at the time).  I ultimtaely chose the CK path 2 years ago with good results from initially 2.5 - 2.7  to 1.9 last December. He helped me off the fence as I did not know which way to go.

Best wishes.   Todd

[MG]

Thanks Todd. Will be checking out CK for sure.

MG

[mcrue]

Dr. Arthur Arts, the neurosurgeon at the Univ. of Michigan in Ann Arbor, now only works on children.

Dr. Friedman was very informative and recommends retrosigmoid approach to save my hearing, even though he says I have a slightly less than 50% chance to save my hearing. He said my AN was "bulky." He thinks I'm too young for radiation. Everyone I spoke with at USC and Dr. Friedman's team have been top notch.

[mcrue]

Boston Mass Proton Beam Therapy called and said I was an excellent candidate; however, I was surprised they wanted to "zap it" away with only a 1 day treatment as opposed to the traditional 6-8 weeks.

Proton Beam Therapy in one day? Sounds like Gamma Knife.

[mcrue]

TrueBeam radiation therapy?

I think this link offers a rather biased comparison vs. Gamma Knife:

http://www.sdgkc.com/gamma-knife/gamma-knife-vs-truebeam/

[PaulW]

From my understanding of the two machines the comparison is valid.
What they don't show is the purchase price of both machines..The Gammaknife costs a lot more to purchase and is only suitable for a small number of patients. Ultimately you get what you pay for.

[mcrue]

Thank you PaulW,

You have certainly helped me move forward in making my decision.

At this moment, I think I'm leaning between Cyber Knife with Dr. Chang at Stanford or Gamma Knife with Dr. Lundsford in Pittsburgh.

Now I need to work on switching insurance during open enrollment from my HMO to a PPO, and get the "Tax ID" numbers of Dr. Chang and Dr. Lundsford to see if they are "in group" and that I will be covered.

I'm "too young" for radiation, and radiation is "better suited for someone 75 rather than 40."

Is that code for: "you might get cancer?" and that we don't have long-term stats outside of 10 years or so?

I've read about people on this forum who were younger than me who were successfully treated with radiation.

"The stats indicate that radiation isn't  turning out to be as promising as we once thought it was going to be."

Plus, God-forbid the radiation treatment doesn't work and you will need a "second surgery" with microsurgery. I read that radiation fuses the cells and almost guarantees facial paralysis if a second surgery (aka: "salvage surgery") is needed via traditional microscopic surgery.

Even while I continue to "watch & wait" I'm told that my AN is continuing to do damage to my hearing nerve, regardless if it grows, and that I will likely be completely deaf in my AN ear within a few years considering my audiogram.

Perhaps I should take a more "proactive" approach to save my hearing while I still can?

There are so many tough decisions to think about, and no guaranteed outcome, no matter how much research one does.

[KeepSmiling]

Proton therapy has relatively poor results for trigeminal,facial and hearing nerve preservation
http://www.ncbi.nlm.nih.gov/pubmed/19054586

Gamma knife and Cyberknife have almost 100% facial nerve preservation and around 70% hearing preservation at 5 years

Accuracy of Proton therapy is +/- 3mm.  Versus +/- 0.5mm for gamma knife and Cyberknife.

Proton therapy has a place, but it is not really suited to small targets like your AN
Cost of the treatment is another consideration.

It would be wise to check the facts about whether it is true that there is 100% facial nerve preservation after Cyberknife. Perhaps this is accurate but unfortunately we had  dialogue with chloes mema, an acoustic neuroma forum member who had cyberknife and who resides in our state.  I believe that our conversations with chloes mema indicated a situation where cyberknife was the treatment and that after the  12 month MRI done at 9 months; that it looked like necrosis (dying) had set into the tumor which was good- that is,  the MRI revealed that  the center of the tumor showed a dark spot which is indicative of (tumor) death- but that the oncologist still couldn't tell chloes mema why chloes mema was having the hemifacial spasms, but that the oncologist kept reassuring chloes mema that they will stop some day. We just sent chloes mema an e-mail asking about the current situation, since we have been thinking about that situation and were a little worried.

[mcrue]

KeepSmiling thank you for bringing that information to my attention.

I've basically learned that the Cyber Knife doctor will promote/sell what he does best - Cyber Knife. And the Game Knife guy will promote/sell what he does best - Gamma Knife.

And so on...

It is certainly an individual decision based on size, location, and statistics.

I will certainly research and evaluate every statistic available which I can find in formulating a decision.

Right now, I am on the standard initial "watch & wait" until my next 6-month post-diagnosis MRI in January 2016. 

Many neurosurgeons have told me that sometimes the best treatment is no treatment at all....at least for now (until January)!

Continued success to your husband!

Warm regards.

[KeepSmiling]

I have sent you a personal message with a quick cut and paste of the e-mails and details about conversations we have had with Proton Therapy patients we discovered here at the forum. There were 2 patients who only had one session of Proton Therapy. We opted for the fractionated (multiple) sessions. I wasn't sure whether you might want to talk to the individuals, so I sent you the information just in case.
Wishing all of you the very best. Stay positive!

[mcrue]

I consulted with a neurosurgeon who possessed significant experience and respect;  he told me that if it where him he would go CK route.  I sense he did not always have that view only recently (at the time).  I ultimtaely chose the CK path 2 years ago with good results from initially 2.5 - 2.7  to 1.9 last December. He helped me off the fence as I did not know which way to go.

Best wishes.   Todd

That's fantastic to hear. So a neurosurgeon who does microsurgery for a living is recommending Cyber Knife? That makes me feel a little better about my possible upcoming decision to have Cyber Knife at Stanford with Dr. Chang.

[KeepSmiling]

 We would like to offer a warning: For those of you in watch and wait mode please be aware that our experience was that this was not a "slow growing process."  His reduced hearing in his left ear was diagnosed in 2009. He suddenly became deaf in his left ear in November 2102. Slow is a relative term.

It is a challenge for us to make peace with what we believe is inept medical  care where we live. We wish he had an opportunity to get an MRI before he lost his hearing. The "dud" ENT doc here in the deep south didn't urge him to get an MRI despite all his symptoms, which all pointed to a vestibular schwannoma, also known as an acoustic neuroma.  We wish the otolaryngologist had ordered an MRI. My husband suddenly just lost his hearing in that ear in 2012. It was quite a shock. When he lost his hearing we immediately changed our otolaryngologist doctor. We found an otolaryngologist just out of Med school and he immediately ordered an MRI. The previous otolaryngologist had decades of experience, but clearly was not up to par with current knowledge and guidelines. My husband definitely would have considered Proton therapy when he had reduced hearing and tinnitus in 2009. Maybe he would not have lost his hearing. Such is life. We must resist the negative thoughts and carry on. It is important to reflect on the positive and move forward. We agree fully about how challenging it is to deal with this medical issue. It is hard to accept the lack of consensus for treating the vestibular schwannomas. Like many others here, we have found that it is good to focus on the only thing you can control: your own thoughts. You can't control anything else, can you? Focus on staying positive.

Good luck to all of you as you make these decisions. Best to you!

[mcrue]

I read that Dr. Lunsford at UPMC with Gamma Knife is a "teaching facility."

The waiver they make you sign prior to Gamma Knife radiation treatment discloses that students may be involved in every aspect of treatment, including the planning and the actual trigger pulling.

That would make me very nervous, as god-forbid something is "off" even 1 mm in the brain.

[mcrue]

I consulted with a neurosurgeon who possessed signifcant experience and respect;  he told me that if it where him he would go CK route.  I sense he did not always have that view only recently (at the time).  I ultimtaely chose the CK path 2 years ago with good results from initially 2.5 - 2.7  to 1.9 last December. He helped me off the fence as I did not know which way to go.

Best wishes.   Todd

Dr. Schwartz from House basically told me the same thing regarding GK.
Each case is unique.