I read about the potential risk of developing brain cancer later in life from radiosugergy, but don’t know anyone who has had this side effects. The technology has been around for over 50 years, is there any scientific study on this?
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Welcome! I am a GK recipient from 2016, and I did a little cursory research and found little information and didn’t look into it in great depth. I knew that was my route and any risk was so much less than the risk of not having it done. I found more info about the risk of CT scans, but the need and benefit far outweighed the risk for me. Through all my medical processes I always looked at pros and cons, risk vs benefit, and while probably over simplified by me in many cases was always able to have peace with my decisions. Take Care, John.
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I can say we definitely have a member here who is currently struggling with cancer who was a young cancer patient and has then led on to having angiograms etc as an adult for her AVM.
I don’t look for studies very much (I run from information I’ve gathered by reading the stories here mostly) but I am convinced it has been established for a long time that exposure to x-rays and other radiation over time increases the risk of cancer over a lifetime.
As with all medical interventions, the doctor will ask you whether you want to progress or not: the choice is yours (/ the patient’s). So the main considerations are:
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Do I need an intervention?
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Do I need this intervention? Is there an alternative?
In regard to my AVM, like John, I felt that not treating my AVM would have led to me dying well before any cancer risk would take me away. My AVM appeared to be changing (as far as I was concerned rapidly) so the choice was clear for me. This is the degree of choice we are making, I feel: totting up your chances one way or the other!
There may be alternate treatments. I can’t remember whether it is cyber knife or proton beam therapy that is considered lesser exposure to radiation than gamma knife. You could ask if there is a radiotherapy route that would deliver less radiation, be more suitable for a person at the start of life. Sometimes the answer is “no” because that doc doesn’t have the equipment, so if you get a “no” be sure to clarify if the reason given is simply that the doc in front of you doesn’t have the equipment!
I do think someone else has talked about this area with some stats on radiation delivered by various means. I’ll see if I can find something.
Best wishes,
Richard
Thank you Richard and John for your response. My point is that since we never hear about or know anyone develops tumor from Gamma (I’m on groups on FB and other internet AVM groups by the way), would it be accurate to say the radiation risk causing cancer from the treatment almost negligible?
You’re asking a medical question and none of us are qualified to say.
For me, the big questions are the ones I said: “Is it important to have the treatment?” and “Is there any discretion offered by the doc as to the treatment that would be effective for the situation in front of us?”
Everything carries risk. Even crossing the road carries risk but you have to balance the risks. There is no actual risk-free way, either to do something or to do nothing.
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My son’s GK treatment is set for February 2024. Please wish us good luck.
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Oh, definitely!
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I haven’t done the research, but our approach to gk treatment as well as to MRI or any other testing has been how do the risks outweigh the benefits. Yes, there’s a risk of developing cancer later in life, but in the present moment there’s a greater risk of rupture. I cannot worry about the future. It’s one day at a time, trying to do the best we can.
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Interesting question.
Although the treatment has been around for some time now the number of survivors is probably still relatively small so i suspect that the data would not be substantial.
I’m now over 30 years post surgery and was told every scan etc had a potential side effect. This was a necessary risk to enable surgery.
Tim
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Hi there , my daughter had stereotactic radiosurgery aged 11 as they could not safely operate and as it was 1991 there was no other treatments available. She is now 44 so 33 years ago. She recently had a CT scan and it showed some scarring which they expected and said it was from the SRS. So all in all pretty good so far. Of course i am only telling you our experience but perhaps lack of any literature maybe because if it did cause any cancers it could be rare. Back then we asked this same question to DR David Forster who incidentally was instrumental in getting the 1st machine over here at Sheffield Royal hallamshire, as the treatment was so new there was no data to go of. I wish you every luck and am sure you will be fine. The relief of getting rid of your AVM will take a big weight of your mind.
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Just FYI - I had a discussion with my son’s neurosurgeon at NYU this week. He said the malignancy rate from Gamma Knife treatment is less than 1 in 5,000 over 30 years. So it’s extremely rare. Good luck to everyone 
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