Hello,

I've been monitoring the regrowth of my AN after surgery for several years, it was growing quite slowly (~1mm/year), so I was happy to watch it for a few more years before taking action. This turned out to be a bad mistake, as over the past year it suddenly grew around 8 mm (total about 1.4 x 0.7 cm now) and exited the IAC.  My surgeon previously recommended I do radiation for the regrowth.  I read however that fast-growing tumors have a much lower success rate with radiation (closer to 70% instead of >90%), so I'm thinking if I should consider a second surgery instead.  I'm meeting with a GK radiologist next week, but I'm not sure if they will consider this fast growth rate or tell me to do radiation anyway.

Has anyone had experience with doing radiation on a rapidly growing tumor?  Or had a radiologist mention to them that they don't recommend radiation for a rapidly growing tumor?

thank you in advance,
Rumen

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Jan 2017 - Retrosigmoid surgery for 3x2x3 cm tumor, Dr. Akagami, Vancouver General Hospital
Sep 2020 - 6mm regrowth detected
Mar 2024 - regrowth to 1.4 x 0.8 cm
Jun 2024 - GK at Toronto Western Hospital

Greetings Rumen -

I hesitate to answer your question.  Please remember everyone's journey is different. I can only let you know my journey and it is in no way any advice to you!

Feb 2019 tumor diagnosed. consulted U of MN and Mayo.  Decided on Mayo.  Both gave the option for either Gamma or surgery.  Decided I would rather not open my head up if I didn't have to.

July 2019 Gamma at Mayo.  Knowing that it was fast growing they calculated the highest safe dose.  Follow up MRIs annually - showed some dying, but Nov 2022 MRI clearly indicated death of only 1 side of the tumor - the other side continuing growth. Surgery recommended now as a second dose of radiation would likely have same outcome.

Worried for surgery as radiation can turn tumors "sticky".  January 2023 Mayo surgery to remove the tumor - surgeons feel like they got it all!  Doing very well post surgery!  Now MRIs only every 2 years.

You need to weigh the risks and benefits for you.  No one else will have your exact tumor or circumstances.

PEACE!!

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G'day Rumen, I had a GK treatment on my fast growing AN on the left.

Before treatment, it grew 3 times in size in 3 years. I consulted both surgeons and radiation oncologists and decided to go to the GK path. I believe radiation is a great option for fast growing AN though depends on your age, health, and other circumstances.

I did my GK two years ago and so far the AN is continuing to subside (or die?). My treating doctors have told me that if in the future I will encounter re-growth, they can perform another GK. Always good to have a plan B for peace of mind but I'm optimistic and keep staying positive.

I suggest you consult for second or third opinions and weigh the risks and rewards that is more suitable and acceptable for you.

All the best with whatever decision you choose.

« Last Edit: April 01, 2024, 11:35:08 PM by DodgeAU »

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Sep 2023: AN shrunk by 3mm
Jun 2023: Hemifacial spasm disappeared
Oct 2022: MRI shows no growth, hemifacial spasms started
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm
Oct 2019:  12x7 mm, Watch mode
Mar 2019: 7.5x5.5 mm, Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left

Thanks for your replies.  After consulting with another surgeon, it became clear that radiation was my only option, as they didn't want to do repeat surgery before I try radiation first (I'm in Canada, so I don't have many surgeons to choose from).  Radiation oncologists seemed to think that radiation works better on fast growing tumours, even though I read studies that showed the opposite for vestibular scwhannomas.

Anyway, I ended up doing GK at the Toronto Western Hospital two weeks ago. They recently got the latest Esprit machine, and I had a choice between the frame and mask, but it sounded like the frame might be a bit more accurate, so I decided to go with that.  Treatment was quite easy, 30 minutes total.  The worst part was a really bad headache after they removed the frame that they gave me some painkillers for, but once I got home I was fine and didn't need to take anything.  I was warned about feeling tired for a few days, but felt normal the next day and haven't had any symptoms since.  So now I wait, I'm feeling a bit sceptical, but hopefully it works    

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Jan 2017 - Retrosigmoid surgery for 3x2x3 cm tumor, Dr. Akagami, Vancouver General Hospital
Sep 2020 - 6mm regrowth detected
Mar 2024 - regrowth to 1.4 x 0.8 cm
Jun 2024 - GK at Toronto Western Hospital

It sounds very promising!  Know that we are pulling for you, and please keep us informed of your progress!

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Hi all, I'm now 2 years post gamma knife, and freaking out a bit...

At the time of gamma knife, my tumor was about 1.5 * 0.8 * 0.8 (about half a cubic cm).  Six months later there was some swelling that was not unexpected, to about 1.6 x 1.1 * 1.0.  At my 1 year MRI, the size was stable, so I thought that was a good sign.  Now at 2 years, it grew again to 1.8 * 1.5 * 1.2.  I think that's around 3 times volume increase in 2 years.... Does anyone think this can still be swelling?  I worry that by the time they decide it's treatment failure, it's going to grow a lot more.

On top of everything, my latest MRI shows I have a small (<1 cm) meningioma, so now I'm freaked about about NF2 and more surgery.

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Jan 2017 - Retrosigmoid surgery for 3x2x3 cm tumor, Dr. Akagami, Vancouver General Hospital
Sep 2020 - 6mm regrowth detected
Mar 2024 - regrowth to 1.4 x 0.8 cm
Jun 2024 - GK at Toronto Western Hospital