ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Blart11 on April 22, 2023, 01:47:24 pm
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Hi, I have recently been diagnosed with an AN (2cm) and am in the process of moving forward with LINAC-based stereotactic radio surgery. Can anyone provide information on this type of radiation; e.g. experiences, post treatment, success, side effects, issues, etc.? Thanks much!
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Hi Blart11, and welcome to the ANA Forums!
Thank you for making your first post here. While I don't have any experience with LINAC-based radiation treatment (and cannot really answer your question), I remember only too well the day when I received my diagnosis (as everyone else here does, too). I could not believe it was true, and I desperately began to read everything I could on acoustic neuromas and I watched every video the ANA produced regarding ANs and their treatment. I was in a rush to do something about it.
The reason I say this is because most acoustic neuromas are relatively slow growing which gives you plenty of time to explore all of your options. You do not need to make a quick decision. Find out what you can about LINAC-based radiation (as you are doing), and explore all of the other options as well. And do not hesitate to get a second and third (or more opinion). Many treatment centers recommend that their patients receive the treatment they specialize in and downplay other treatment options. As a result, it is somewhat difficult to receive an unbiased opinion from specialists. It is also somewhat difficult to receive an unbiased opinion from patients on the forums. Most who post here believe that the treatment they selected for themselves is THE best option.
So, my counsel to you is to continue to do what you are doing and gather as much information as you can, not just on LINAC-based radio surgery, but on all of the possible treatment options. And don't just go to a specialist who happens to be located closest to where you live. Instead, once you have determined which treatment option is best for you, then find the best specialist for that particular type of treatment. There are huge differences in results between those who provide treatment for a few acoustic neuromas in a year and those who do hundreds of them in a year.
Best wishes on your journey!
Don
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Mine was that size but I had CK 4 years ago. From what I know they all pretty similar in outcomes. Where I live (Perth) Gamma wasnt available only CK and I am pleased so far with my results. Had no side effects.
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Thanks donjehle and mwatto for the responses and information!
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Blart11,
Welcome and sorry for the delay. I remember when I first got diagnosed I read as much as possible too, like Don and mwatto mention, take it all in but do what you are happy with. We all have comfort levels.
When I started researching I looked at the LINAC information. From what I read about it - it looked state of the art or the newest and I don't think that is a bad option at all. I did proton radiation and I think the two are very similar.
What direction are you leaning towards now that you have had a little time and where?
GB
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Gbly, thanks for the information. I am getting the linac-based radiation treatment in Boston. I’ll post more afterwards.
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Hi Blart11,
I'm in northern New England and looking for recommendations for Cyberknife or similar fractionated radiosurgery in the area, including Boston.
How are you doing? Finished with treatments? I hope it has gone well for you. Would be curious to hear where you went and other details.
I have a similarly sized presumed acoustic neuroma showing too much growth in last year to continue Watch and Wait any more.
Best,
Skier
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Blart11 - yes please let us know what you decided and how it is going.
Skier - I have not had either, but yes I have heard great things about them both. I think some of the decisions are people doing what is closer to home. But all fantastic options.
Where are you at in the decision process and how are you doing? These are always very challenging times and uncertainty. But knowing is the first part and then the way through and healing can begin.
We are thinking of you both and please keep us posted. You both might have posted in the post section and I have not gotten that far.
v/r GB
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Hello gbly & skier:
Here’s a quick update on my treatment. I had five consecutive daily radiation (fractionated stereotactic radiosurgery) treatments at Brigham and Women’s Hospital. They use LINAC-based technology, but I don’t know the brand. Recovery is going very well, just experiencing minor normal side effects such as headaches and fatigue. The first week during treatments I had some minor balance issues, but it went away quickly. I won’t, obviously, know how successful it was until I have a few mri’s; which will be scheduled every 6 months at this point. The hospital, doctors, nurses, radiation therapists, and other staff were phenomenal. So things are going well right now, and I will post periodic updates as things progress and I get the follow-up mri’s. Best of luck to you both in your treatments and journey going forward!