Author Topic: LINAC-based radiation treatment  (Read 1410 times)

Blart11

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LINAC-based radiation treatment
« on: April 22, 2023, 01:47:24 pm »
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!

donjehle

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Re: LINAC-based radiation treatment
« Reply #1 on: April 22, 2023, 06:22:24 pm »
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
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

mwatto

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Re: LINAC-based radiation treatment
« Reply #2 on: April 23, 2023, 01:54:20 am »
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.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

Blart11

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Re: LINAC-based radiation treatment
« Reply #3 on: April 23, 2023, 11:14:12 am »
Thanks donjehle and mwatto for the responses and information! 

gbly

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Re: LINAC-based radiation treatment
« Reply #4 on: June 07, 2023, 11:31:40 am »
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

Blart11

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Re: LINAC-based radiation treatment
« Reply #5 on: June 17, 2023, 02:33:38 pm »
Gbly, thanks for the information.  I am getting the linac-based radiation treatment in Boston.  I’ll post more afterwards. 

skier

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Re: LINAC-based radiation treatment
« Reply #6 on: July 02, 2023, 03:26:39 pm »
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

gbly

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Re: LINAC-based radiation treatment
« Reply #7 on: July 10, 2023, 11:27:20 am »
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

Blart11

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Re: LINAC-based radiation treatment
« Reply #8 on: July 16, 2023, 01:16:40 pm »
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!