ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: RGG on March 28, 2024, 10:16:04 am
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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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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.
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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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It sounds very promising! Know that we are pulling for you, and please keep us informed of your progress!