treatment plan
i've been feeling much better since making a decision about how i want to treat my brain tumor, and now i have a treatment plan in place.
i'll be receiving five fractionated treatments of gamma knife (GK) radiosurgery at ucsf from september 8-12, 2025. (what does this mean?)
GK offers highly targeted dose administration so that the radiation targets the entire tumor, but ensures a very rapid dose fall off once the tumor is hit so that nearby structures aren't affected. the radiation damages the DNA within the tumor cells so that when the cells go to divide, they die off instead of successfully dividing and growing the tumor.
ucsf has one of the best skull base programs in the world, and one thing i loved about their team over my local team is their collaborative, multidisciplinary approach. complex cases like mine are always discussed collectively amongst the radiation oncology team, neurosurgery team, imaging department, and physicists in order to develop the best course of treatment for the patient.
this morning i had my consult with my radiation oncologist (RO), and she laid out my treatment plan as follows:
pre-treatment
prior to treatment, i'll need to go in for an updated mri and mask making session. my most recent mri was from june 29, 2025, about 10 weeks prior to treatment, so they'll want to make sure nothing has changed before proceeding with my treatment. the updated mri will also take closer up views of my meningioma so the team can ensure they've got my treatment plan tailored to my meningioma as closely as possible.
i'll also need to have my custom mask fitted and made so i'm ready to go on monday, september 8. patients undergoing gamma knife radiosurgery use either a fitted frame that's screwed into the skull, or a mesh mask that's custom fitted to the patient and secured to the table under the patient's head. in my case, i'll be using the mask, which sounds much more comfortable than the frame.
treatment
i'll be receiving five fractionated doses of GK over five days (M-F) starting monday, september 8. each dose will only contain five Grays (Gy), for a total dose of 25 Gy. they'll be using the ICON machine on me, which is the most advanced GK machine available today.
the fractionated doses mitigate risks of toxicity, which can cause damage to essential structures near my tumor, such as my cranial nerves, and side effects that might arise from swelling and inflammation.
each patient is different, but my RO anticipates my primary side effects from radiation to be mild fatigue, mild headaches, and possibly some nausea. there is always a chance of swelling and inflammation that can affect nearby structures like my cranial nerves or brainstsem, but my risk of experiencing these is only around 5-10% and they are usually temporary and resolve quickly with a course of steroids.
there is also a very small (<5%) longer term risk of inflammation in the brain stem, which usually doesn't develop until one year or more after treatment. if this does happen, it'll cause neurological symptoms like weakness or numbness on one side of the body, worsening double vision, or anything related to the cranial nerves, but again the risk of this is very small.
finally, radiation can cause secondary malignancy (cancer or other tumors). i've always known about this, but my RO clarified something for me today that i found interesting and that provided much relief. studies have shown that for GK specifically, the risk of GK causing secondary malignancy is about the same as the general population developing a tumor, which is to say the risk isn't elevated at all from undergoing GK.
as for symptom relief, there is no guarantee that treating my meningioma with GK will result in any improvements with my double vision. my RO is hopeful that i will experience some symptom relief over time since meningiomas typically grow very slowly, and it has only been a few months since i started experiencing double vision and presumably my meningioma started touching my 6th cranial nerve. seemingly, i have all the factors playing in my favor (e.g. age, health, length of time being symptomatic, etc.) but each human body is so unique in its own way, and we'll just have to see how it plays out.
post-treatment
in the same way that meningiomas grow very slowly, they also shrink very slowly. as such, any tumor shrinkage or symptom relief likely won't be realized until months or years after treatment.
i'll need regular follow up MRIs after treatment, but i likely won't need my first follow up MRI until 3-6 months post-treatment, followed by 6-12 month follow ups after that (TBD depending on how my first follow up MRI looks). the goal in the first couple of years is to see stabilization of the tumor and no additional growth. over the years the hope would be to see some tumor shrinkage, symptom relief, and of course no new tumors.
at 2.5 weeks out from treatment, i'm feeling pretty good! i'm sure some new waves of anxiety will hit as we get closer to september 8, but if there's one thing i've learned from the past few months it's to take each day as it comes.
my plan is to update you all here during treatment, so stay tuned for more updates shortly.