This blog post is written by NK. NK kindly reached out to me and asked if they could share their research into choosing radiation as treatment for an acoustic neuroma. As I have never personally received radiation, I was excited for NK to share their experiences. I know many people who have been diagnosed with acoustic neuromas and have been overwhelmed looking into radiation. This is not medical advice, but some information to help you organize your thoughts and hopefully give you useful mile markers on your journey.
“By the summer of 2022, I learned that my tumor had re-grown to its full size, and it became clear that the best course of treatment was a second brain surgery followed by radiation to stop tumor growth. I was frustrated, overwhelmed, and really scared. For my first surgery, everything had happened really quickly because my symptoms progressed so rapidly. Combined with the unfortunate timing (peak pandemic, pre-vaccine), this meant I had very little face-time with my doctors to understand what was happening, and I felt unprepared and overwhelmed about the entire thing. Radiation felt even more serious than surgery, and this time, I wanted to inform myself, understand my options, and ask my doctors the right questions before moving forward.
Unfortunately, information about the options was really hard to find — it was all over the place and it could be hard to understand without knowing what to look for. So my fellow science PhD friends and I got to work and compiled the information ourselves. We pulled together information from reliable sources on the internet and primary literature and put together our research on radiation for acoustic neuroma to help navigate my (many) doctor’s visits.
I’m sharing this research below in hopes that it will help some of you avoid the same frustrations I felt when I tried to find information about radiation to treat acoustic neuromas. I hope that accessing everything in one place might help alleviate the stress of searching for information and make the experience at least a little bit less confusing.
I also knew that going into my doctor’s visits with a plan was important since I would get very little time with them. However, I often didn’t know where to start or what to ask. With this in mind, I’m including the narrowed-down list of questions I asked all of my doctors. These helped me get the most useful information from my doctors to understand 1) what the best path forward would be for my case specifically, and 2) what to expect during and after treatment. I’m hoping that this may be useful as a jumping off point for anyone who is overwhelmed – hopefully seeing my questions might help get your own list started.
I know how difficult and isolating this experience is, so if anyone has questions (about radiation, second surgery, re-growth, navigating doctor’s visits, etc.) please feel free to reach out at terminatetoby@gmail.com!
Questions for my Doctors
- Is a second surgery necessary and why?
- Is radiation necessary and why?
- What type of radiation is best for the size, location, and likelihood of regrowth of my tumor?
- What are the immediate side effects of radiation?
- Is there a risk that my current symptoms may get worse due to radiation treatment?
- I focused on specific symptoms I was worried about based on my research
- Is there a risk that my current symptoms may get worse due to radiation treatment?
- What are the long-term side effects?
- If the radiation fails and I need another surgery, does radiation affect surgical outcomes down the line?
- What is the likelihood of developing a secondary tumor (cancer) given my young age?
- I had the stats from literature I found below, but asked if they knew of more recent data and about their personal experience in their practice
- If there is a possibility of developing cancer down the line, are there genetic tests to be able to detect early?
- How much time will I need to take off of work?
- If you had to recommend a treatment plan to your family member with my symptoms, would you recommend the same treatment plan? How would you evaluate the risks?
- Where is the best hospital to pursue treatment in the same location (surgery + radiation)?
- I’m lucky to live in Boston where this is a possibility, and the doctors were pretty candid about whether my tumor was a good candidate for each radiation type“
| NK’s research on radiation for acoustic neuroma* (*not comprehensive, compiled July 2022) | Three forms of radiation are recommended for vestibular schwannoma/acoustic neuroma. Mayo Clinic has a good overview of the differences here | |||
| Gamma Knife | Cyber Knife | Proton Beam | ||
| Single Dose vs. Fractionated | Stereotactic Radiosurgery | (Hypo)Fractionated Stereotactic Radiosurgery | Fractionated proton beam therapy | |
| Type of Radiation | Gamma rays (photons) | X rays (photons) | Charged particles (protons) | |
| Use of headframe? | Metal headframe Installed same day as procedure | Frameless Mesh mask fitted before procedure | Immobilization device Mask or bike lock (1.5 hour session for fitting) | |
| Imaging | Same day CT or MRI | 1-2 weeks before procedure | Same-day CT to create radiation plan in the first session | |
| Treatment course | Single session | Fractionated 1-5 sessions 30-60 min | Treatment every day over 4-6 weeks Radiation applied for ~20 minutes ~1 hour total time in and out daily | |
| Reported efficacy | 81-99% 5-year tumor control Data from 28 studies, patients followed for ~12.5 years (Tsao, et. al) | 94% – 98% Data from 11 studies, patients followed for 6 months to 10 years (Mahboubi, et. al) | 93-97% Data from 8 studies (Santacroce, et. al) | |
| Reported side effects | Facial nerve weakness, trigeminal nerve weakness (numbness/pain and spasming) Brain inflammation (radiation edema) Headache, dizziness, balance disorders | Facial nerve weakness, trigeminal nerve weakness (numbness/pain and spasming) Ringing in ears Vertigo Balance disorders Post-radiation hydrocephalus if near skull base | Hearing loss Impact to facial and trigeminal nerves, similar to other tumors. However, should have lower impact because proton beam is more targeted and doesn’t leech into the surrounding healthy tissue compared to other types | |
| Risk of secondary tumor formation | 0.04 – 2.6% after 15 years (Nukaga, et. al) Most papers emphasize that the rates are “very low” because they use low doses of radiation | Not statistically significant but can occur especially for larger tumors (Diaz, et. al) | Long-term studies with cognitive outputs needed but modeling analysis shows significantly less risk of secondary tumor formation because protons don’t reach healthy tissue. (Sakthivel, et. al) (Lesueur, et. al) | |
| Additional notes | 20-30% patients show tumor “swelling” within first 3 years because of treatment (This is *not* tumor growth.) | 20-30% patients show tumor “swelling” within first 3 years because of treatment (This is *not* tumor growth.) | Tumor expansion occurs within 1st year (not quantified — based on conversation with Dr. Shih at MGH) | |
| Link to description | Princess Margaret Cancer Centter — Gamma Knife (with frame) | UCSF Brain tumor Center — Cyberknife (no discussion of mask) | MGH — Proton Beam Therapy | |
| Hospitals near Boston | Gamma Knife Spotlight | Tufts Medicine | CyberKnife treatment at BIDMC | Proton Therapy Treatment for Brain Tumors | Mass General Brigham | |
| Additional Literature | Review of gamma knife patient studies (Arthurs, et. al) | Review of cyberknife patient studies (Mahboubi, et. al) | Review of proton therapy patient studies (Lesueur, et. al) | |
The "Lucky" Brain Tumor 
Leave a comment