ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: v357139 on March 04, 2017, 07:41:55 pm
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Friend of mine has tumor on each side but blood test negative. He is wondering if radiation is an option. Has anyone with NF2 ever been treated with radiation, and what was the outcome?
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Some drs will do radiation on NF2 tumors and some won't. The NF2 tumors affect the nerve in a way that regular ANs don't. I would think depends on what size tumors are and location. One needs to have a dr who is very familiar with NF2. Also what the symptoms they have. Trying to save hearing on side anyway can be more important in treatment.
Cheryl R
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Someone in my support group has NF2, They had GK performed on a 3cm tumour and remained in W&W for their 1cm tumour. 6 years on their 3cm tumour has remained stable and their 1cm tumour has grown to 1.8cm.. Hearing was very poor before treatment on the 3cm side and OK on the 1cm side. Now they have lost all hearing on the 1cm.. but still have some hearing on the 3cm side.
They also came up negative on their genetic testing. They have had issues with hydrocephalus caused they think by the 3cm tumour giving off proteins as it dies. They are currently considering surgery to remove both tumours and having brain stem implants to restore their hearing and permanantly resolve the hydrocephalus Or another round of GK for the second tumour. They are also trying to get on a trial for new chemo/immunotherapy drugs which has shown to reduce or stabilise NF2 tumour growth. Trials so far have shown some promise But side effects of the treatment often mean it must be stopped in the longer term
GK can be performed on NF2 tumours but the failure rate is much higher. People with NF2 are genetically more susceptible to cancer too.. About 50% of all acoustic neuromas that have become malignant after radiation have been for people with NF2.