Radiosurgery from a non-expert center

[drumfest]

Hello,  I'm wondering if anyone out there can reply with successful outcomes at non-expert centers?  I had an appointment with a radiation oncologist at a local hospital & he assured me he can treat my tumor as his team is excellent, but he simply just doesn't see alot of ANs because there just aren't that many that seek treatment where I live. (San Antonio)  He treats many tumors and would do fractionated on my tumor with "The Edge" system.  He also told me he treats many other tumors that are more difficult than mine.  I'd like to go with him because it's the easiest option (insurance wise) and his team does have a reputation for being excellent.  It's just an issue with the lack of patient volume he's treated with ANs & most of my radiosurgery research has been gamma & cyber knife expert centers.  I'm fully aware of the possible caution with having treatment at a non-expert center.  I don't want this to come back and bite me that's why I'm writing as well.

Please reply if desired.  Thanks for reading. 
D

[DanFouratt]

I am not a doctor simply a person who went through radiation.

In my decision journey I looked at high volume AN surgeons.  I believe this is a must. There is experience required to open up the brain.

When I talked to Radiologists I was satisfied with high volume tumor treatments. I never asked the doctor I selected how many AN tumors she treated.  I had a great experience. I believe the skill is in running the simulations and looking through the data to create the best plan for radiation.  This planning process is generic to all tumors.  I had a team review my plan and one of them was a my ENT surgeon who was a high volume AN surgeon.  So I would ask how the doctor will create the treatment plan and who is part of that team. I am not sure if an ENT is required but I was glad I had mine but it was also convenient to do so.

In full disclosure I am leaving my radiologist for the follow up as I felt the process at UNC Radiology was not patient first.  This has nothing with the level of care received but how it was given.

Good luck

[drumfest]

Dan,  Thank you very much for replying and telling me about your experience.  It helped alot!  I'm still struggling with the decision to pull the trigger.  All the experts that have seen my latest MRI in March 24 say, the tumor is clearly growing a small amount and treatment is recommended.  I'm having some dizziness and it has been going on for awhile, but it's unclear if the tumor is the cause.  I was trying to get a definitive answer on if radiation will mitigate dizziness, but haven't gotten a clear yes or no.  I was told after surgery & once the remaining balance nerve learns to adjust, dizziness will subside in time. (this is the only reason why I may favor surgery or radiation)  No one wants to live with non-stop dizziness!

Thanks again!!!  And, if anyone else reads these, please feel free to opine.  I've learned much in the past two years through this website and other channels.

d 

[donjehle]

Hi drumfest,

I would really encourage you to seek care from those who have a lot of experience with acoustic neuromas.  There are a lot of well-meaning healthcare providers who do not see many AN patients, and they believe they can treat the AN because they treat other cancers.  But acoustic neuromas are much different than other types of tumors.  And these boards occasionally post horror stories where the patient went to a local hospital because the provider promised that they could take care of the AN, and then the patient had terrible outcomes.

Your brain is not something to take lightly.  You want those who are highly skilled with a lot of experience to take care of it.  Please do not let someone without much experience 'learn' on your brain.  If they mess up, you often do not get a second chance.

I won't say that no one who goes to a non-expert center never has a positive outcome.  But for me, it's not worth taking the risk.

I wish you the best on your continued journey!
Don

[richcooks]

  I wish I can give you great advice on how to pick the right Doctor to radiate your AN.   I looked at it from a practical point of view.   Once I decided on Fractionated Stereotactic Radiation (FSR) I searched for someone who does that type of treatment.   I saw my AN as any other tumor in the brain and would ask the Doctors if they treat brain tumors.  Of course I asked if they had experience with ANs.  Is my AN a good target for you to engage?  What challenges does the location of my tumor present?  How is engaging a AN different from other types of brain tumors?  I saw a neurologist once and told him that I was leaning toward FSR treatment and what was his opinion and does he think my AN makes a good target.   I chose the one who took the time to address all my questions, and allay my fears.  I felt all were honest about their results and I made a choice.  He is a local Oncologist treated all kinds of brain tumors including ANs.

  Now 14 years since my treatment the Radiation Oncologist who treated me is the only Doctor I see.   I get am MRI every 2 years and go see him and things are still fine.  I never lost any additional hearing as a result of the treatment.  As a side note, my brother also has a AN and he chose Gamma Knife because that is the technology his Doctor had, he lost his hearing in his affected ear.   I highly recommend you break up the Radiation treatments into smaller doses.

  Hope this helps and best of luck.  Remember there are many many successful AN patients out there.  You are not alone. 

Regards,
Rich

[mwatto]

Like Richcooks I went to a radiation oncologist for my AN 5 years ago. I had fractionated CK. The centre a private facility -5 D Clinics in Perth - mainly treated cancer tumors however the team itself had many years experience with radiotherapy. My own Professor well over 30 years. The team included a Physics chap, a neurobiologist etc. I had 3 fractions 5 years ago and no side effects my hearing still 87% (I see an audiologist every year) balance totally fine. I had nerve pain but that turned out to be TMJ and post vax or Covid reactivation of virus maybe herpes simplex (or so a neuro said who I saw this year re I was worried I had trigeminal neuralgia). It has gone now and I am back to being pain free. Have had no contrast MRI past 5 years and it has shrunk by half (was cystic but that disappeared after treatment).