Author Topic: Proton Beam vs Cyberknife Radiation  (Read 1777 times)

PBFight4SB

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Proton Beam vs Cyberknife Radiation
« on: January 27, 2023, 03:18:16 am »
My kid had 4 surgeries so far for his NF2. Surgeon suggested that now it is time to do radiation.
Surgeon said Proton Beam is more precise and can cover more area, less invasive and lesser chances of damaging healthy tissues. But, it is very expensive compared to Cyberknife.
We have options for Cyberknife in my city but for Proton Beam, should relocate temporarily to another city.

What's your opinion?

donjehle

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Re: Proton Beam vs Cyberknife Radiation
« Reply #1 on: January 28, 2023, 03:15:34 pm »
Hi PBFight4SB,

My heart goes out to your kid to have four surgeries so far and still has to have further treatment!

I am not a physician and cannot give medical advice, but in my opinion, I would suggest getting a second opinion for your kid.

My understanding (and I could be wrong, and I also have not seen your kid's MRI nor understand his full NF2 history), is the reason most acoustic neuroma specialists use Cyberknife or Gamma Knife instead of Proton Beam is that there is a better track record of acoustic neuromas being successfully treated with Cyberknife or Gamma Knife than using Proton Beam.  Proton Beam treatment is wonderful for treating many kinds of tumors, but its success rate with acoustic neuromas has not been the best.  If that's true, do you want to go with a more expensive option which does not work as well?

With that said, I will repeat that it could be that for your kid's specific case, the Proton Beam treatment would be best, but I would recommend that you get a second opinion from a specialist who does not do Proton Beam therapy just to have another perspective.

I wish you and your kid the very best for health and well-being!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

PBFight4SB

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Re: Proton Beam vs Cyberknife Radiation
« Reply #2 on: January 30, 2023, 01:02:14 am »
Many thanks for your valuable inputs.

Cyberknife radiologist brought up a point that Proton beam can't effectively treat NF2 as there is a brain stem in between 2 tumors or something of that sort.

Since Cyberknife and Proton Beam are both different hospitals, both vouch that it is the best.

Cyberknife radiologist says he will cover other areas as well in spine if he finds any tumor that might be problematic in future but the Surgeon who did surgeries says "Do not worry on tumors in spine unless they pose a problem". :(

I have to decide soon as, even after 4 surgeries (3 on one side and 1 on the other), both are still around 3+ cms.

Susan A

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Re: Proton Beam vs Cyberknife Radiation
« Reply #3 on: March 23, 2023, 07:49:48 pm »
I have an inoperable meningioma and Dr Plotkin at MGH recommended that if I ever need it to be treated, proton beam therapy would be my best bet. He says he doesn't like recommending radiation for younger patients because of the potential for subtle long-term damage, but when it does appear to be the only option he recommends proton beam therapy. There are fewer proton beam centers (as you know) and I think it's not surprising that radiation oncologists tend to know more about the more common radiation treatments and dismiss proton beam therapy because they don't know as much about it.
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA