Pre-Treatment Options > Pre-Treatment Options

Is Radiation an option for me?

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gary.s:
My neurological team at Barrow Neurological Institute here in Phoenix also told me that radiation causes the tumor to become sticky and more difficult to remove. But they also told me that radiation has a 95% success rate, so that only very few people need surgery after radiation. My symptoms increased as the tumor enlarged, so it was time for me to make a decision on which way to proceed. Other than my anxiety, radiation was very simple compared to a surgical procedure. Learn as much as you can so that when you meet with the doctors, you can ask very informed and intelligent questions. Be well,

Gary

SP:
Hi Etai,

Good luck with this difficult decision of which treatment to pursue.

Every surgeon I contacted (in Sydney) advised that I needed to have surgical removal and that radiation was not a good option for the size of my tumor. That said, the risks of surgery caused me to search elsewhere -- I decided on Cyber-knife in USA...

Your situation sounds similar to mine , although at the time I had no hearing loss; my tumor was also considered big: ie over 3.0 cm...and also has displaced the brainstem on left hand side. After all the stress of searching for the right treatment for me I decided on CK with Dr Chang & Dr Soltys at Stanford in 2015.

I just had my 3 year MRI today and I'll be posting my latest update once I've met with all my doctors in a couple of weeks, more detail of my story to date here:
https://www.anausa.org/smf/index.php?topic=22640.msg979769729#msg979769729 , there are also good informed comments here from others that have been on this journey.

FYI.. at the time, Dr Chang advised me that a skilled surgeon should not find a post radiated tumor much more difficult to remove that a non radiated one.

useful questions from anausa: https://www.anausa.org/images/pdf/Misc/Questions-to-Ask---Radiation.pdf

Take good care

Stella

Gtmochi:
Hi Etai,

Hope you're well! I just wanted to chime in with what Stella and Gary said regarding radiation and size.

When figuring out what to do, some doctors I spoke with said I was a candidate for radiation, but leaned toward surgery either because of my age (I'm 43 now)  or size. Others said I could do whatever I felt best about - my AN was amenable to both. As far as age goes, that's something I think everyone has to research and then sort out their own opinion.

At diagnosis, my AN measured 1.8cm x 2.2 cm x 2.5 cm and at treatment Dr. Chang measured it at  2.6 x 1.8. According to my diagnostic MRI report, it has "mass effect on my brainstem". Fun! Anyway, I had no vertigo, mild hearing loss, ear fullness, tinnitus, and mild face tingling that started right around diagnosis. Like Stella, I felt really strongly about the risks surgery posed. When making the rounds and speaking with doctors, some said it was more difficult to have surgery after radiation, some said a skilled surgeon should not find it much more difficult.

When I met with Dr. Chang previous to treatment, during the course of conversation he said that he's used CK on tumors in the 3.0-3.5cm range (about - I can't remember exactly - it may have been more). Of course there are mitigating factors as each case is different, but it is done.

I had treatment in April, and so far, so good. Though it is possible that the AN swells after radiation treatment, how much and if that then causes an increase in symptoms is very much case by case.

Anyway, no matter what path you choose, it needs to sit right with you!  Like everyone else, I urge you to continue to speak with doctors. I sent my MRI to several doctors to look at - some I met with in person, some spoke to me via phone or email. It was helpful for me to evaluate commonalities in answers to my questions as well as points where various professionals had differing statements. Both of those things helped me form an opinion on what step to take next.

Best of luck on your journey!

Jessica


PS - I can't wait to hear about your MRI, Stella!!

Natalie29:
Hi Etai,

Hope you are well!
I am also from Israel, and had quite a journey before deciding on course of treatment.

From the doctors I consulted with I did understand that surgery if needed after radiation might be trickier.
My tumor was 1.5 cm, and I had the surgery last year at 29. It was my second surgery (the fist was in Israel 9 years ago) and my symptoms were small to moderate hearing loss, tinnitus, occasional dizziness, and headaches that started after the first surgery.
I consulted with Neurosurgeons Neurotologist and a Radiation Oncologist. In my case, surgeons were inclined toward a surgery due to my younger age and tumor characteristics, and the radiation oncologist said both options are good in my case.

I ended up doing the surgery (translabyrinthine approach) in USC with Dr. Friedman (who has since moved to University of San Diego) and Dr. Giannotta, and am very happy with the outcome. 

Will be happy to talk and share more in private if you like!

Kind regards,
Natalie

etam:
Hi all,
Thanks for sharing your stories, dilemmas and advices along the way, helps to know you're not alone...

Consulted with a Neurosurgeon and a Radiation Oncologist The from the Swedish Medical Center in Seattle, they suggested using CyberKnife in 5 treatments (day after day) to lower the dose at each time.

They were very nice and helpful, presented all options and possible outcomes.
They spoke about a 1% of growing a malignant tumor after 10-20 years, I'm 48 and though the odds are not so high it's a troubling thought.

Trying to consult with Dr Chang as well, I understand that the Stanford clinic pioneered the use of CyberKnife. Thanks Stella & Jessica for pointing them out.

Natalie, I would be very happy to chat with you and hear more of your AN experience. You probably know a lot about the clinics and doctors here in Israel, that could be helpful as well, how can I contact you?

BTY - I looked up my first post where I wrote that I have 70% hearing loss. Well it's 30% hearing loss (70% still doing the job). so I can say that for now I'm quite healthy and feeling great...

Wish all of you the best, long years of good health

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