Is Radiation an option for me?

[etam]

Hi all,
I live in Israel and was diagnosed with left side AN in July 2018 (a month ago).
Tumor size: 2.9X2.5X1.4, pushing the brainstem.
About 70% loss of hearing (left side), no Tinnitus, Dizziness, Vertigo or Headaches.

Consulted many doctors (ENT and Neurosurgeons) one of them is considered to be the top Neurosurgeon for AN in Israel. Most of them told me that my tumor needs to be operated and removed.
A week ago I met another neurosurgeon and a radio-surgeon who told me the tumor can be treated by radiosurgery.
 
Along the way I heard that after being treated with radiation the lesion is stiffer and it's harder to take it out in a surgery (should one be needed in the future). I also heard that after radiation, the tumor swells and it might push the brainstem even more (may cause damage). Did anybody hear or know whether any of this is true?
The radio-surgeon dismissed both problems.

When I was sure that I'm heading towards an operation, I scheduled a consultation with Prof Bertalanffy a neurosurgeon from INI Hannover Germany (2 weeks from now), I know that he recommends a surgery in my case (obviously…).
I would appreciate names of top radio surgeons in Europe to have a second opinion whether radiosurgery is an option for me. My tumor size is exactly on the border of "to big to use radiation" so I want to be sure that it's an option before making the decision.

Thanks a lot,
Etai

[Patti]

My thoughts are that if it is pushing on the brainstem you should have it removed. I am not a doctor.  Patti

[gary.s]

Hi etam,

I had Cyber Knife radiosurgery about 3 1/2 months ago in Arizona. My tumor was a little smaller than yours and still within the limits of radiation instead of surgery. My tumor was beginning to push on my brainstem, hearing loss, dizziness and fatigue. My doctors told me that radiosurgery was an option not only due to the size, but also my age. I am 68 years old, and it is safer to risk radiation at my age since I only have another 15+ years. The doctors seem to recommend surgery for people much younger because no one really knows what will happen to a person in 30-40 years after radiation. This is something you really need to talk to your doctor about.

There is swelling after radiation, I am starting to feel that now. More ringing in my ear, facial numbness and some dizziness. Most of this will go away after the swelling reduces, but this can take anywhere from 6 months to 2 years. I am sorry that you are dealing with this, but the forum has been very helpful to me and many others. Keep asking questions and learn as much about this as you can before you make a final decision.  Best of luck.

Gary

[etam]

Thanks Gary and Patti,

Have you (or anyone else...) heard that after radiation treatment, the tumor becomes sticky and harder to remove by surgery?

[Citiview]

Hi

I was told by a prominent doctor/surgeon that if radiation fails then surgery is more risky.
I also heard the same thing in a webinar by Dr. Link at Mayo in Minnesota. (That webinar is in the ANA member section)

I think radiation close to the brain stem is risky because it's the neural pathway to the rest of your body so if something goes wrong it's really bad.

[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

[notaclone13]

In regard to radiosurgery in Europe, there appear to be some really good centers in Germany. I believe PaulW traveled from Australia to Munich Germany for treatment in 2010. You could send him a PM and ask him where it was done. I found this publication by a group in Cologne:

Acoustic Neuroma Treated with Stereotactic Radiosurgery: Follow-up of 335 Patients.

Rueß D1, Pöhlmann L2, Hellerbach A2, Hamisch C3, Hoevels M2, Treuer H2, Grau S3, Jablonska K4, Kocher M2, Ruge MI2.

[PaulW]

I was treated at the European Cyberknife Centre in Munich by Dr Alexander Muacevic
I believe he has treated over 1000 acoustic neuromas surgically, with GK and CK
He was excellent.
He was president of the Radiosurgery Society for a few years and helped create a patient database which is shared by many Cyberknife Centres worldwide. The sharing of knowledge and best practice has helped improve the outcomes everywhere.

He has also teamed up with the son of John Adler, the inventor of Cyberknife to create a website to get medical papers published faster...

Www.cureus.com

Worth checking out

[Jimbo]

Hi I had a smaller tumor; had radiation over 10m years ago, and am fine.
Yes, some surgeons tried to scare me about post radiation issues, but others said it should not be a problem if surgery was needed after radiation.
Good luck