Author Topic: Met with Radiology Oncologist for 1st time  (Read 397 times)


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Met with Radiology Oncologist for 1st time
« on: December 22, 2017, 11:48:45 am »
Met yesterday with Radio/Oncologist yesterday.  Confirmed 2cm tumor.  Good news only symptom so far is some ringing and a bit of hearing loss. He confirmed recommedation that CyberKnife was the best option.  He said the goal is to preserve hearing and the cyberknife with stop the growth.  Said data shows 90-95% success rate of stopping growth and no further damage.

Any opinions?



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Re: Met with Radiology Oncologist for 1st time
« Reply #1 on: March 09, 2018, 08:37:49 pm »
90-95% success rate sounds about right.  There have been claims about cyberknife being better for hearing preservation, but I am not sure how well documented this is yet.  You should also know about all the options.  Surgery is also a good option.  And in some cases Wait and Watch is a good option.  I would first educate myself on the pros and cons of the options.  It is not a bad idea to get several opinions as well.  This is not to push you away from radiosurgery by any means, it is an excellent option.  Only to  have you be fully aware of all the options available to you.

Very important - how many has the prospective doctor done?  On this site, ANA recommends going with doctors who have extensive experience in AN treatment.

PS: Feel free to PM me if you want.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!


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Re: Met with Radiology Oncologist for 1st time
« Reply #2 on: March 10, 2018, 10:30:30 am »
My situation was complicated because I have complete sensory hearing loss on the right and a growing vestibular schwannoma on my left.  It was definitely growing and I was beginning to get symptoms of vertigo. The risk of watching/observing and becoming deaf on the left ear was concerning.   I decided to get cyberknife radiation.  The immediate risks are lower in terms of hearing loss at least in the short term.   The doctor from NY, Douglas Kondziolka has experience and the team seemed to recognize the additional issue of my current one sided hearing loss.  Procedure was relatively easy, but will see in a few more months if it worked and shrunk the tumor and then if over the next 5 years there my hearing stayed intack! will keep you posted.   


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Re: Met with Radiology Oncologist for 1st time
« Reply #3 on: March 17, 2018, 11:12:44 am »
You may want to consider proton beam radiation. My husband had zero side effects from it and it has been 5 years since his treatment. Look at my profile for my husband and you will see how it was 1.5 cm and now is .5 cm. It was worth it for us to travel to Boston for 6 weeks and get fractionated proton therapy. Luckily he set up a virtual office at the cancer library there and he worked full time during the 28 sessions, only taking time out for the radiation treatment , which was about an hour or so each day.There are very few champions for Proton Therapy here at this forum because they have not side effects. I could give you contact info for several individuals who had Proton Therapy if you would be interested. Make sure you understand all the options . Try to get informed consent before you proceed.
12/O6/2O12: 15 mm lesion.. Proton Therapy in 2013 Massachusetts General Hospital 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus.