Author Topic: radiaton for larger (3cm) tumor??  (Read 6890 times)

becknell

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radiaton for larger (3cm) tumor??
« on: June 05, 2005, 04:06:00 pm »
My husband has a 3cm An. We have been advised against radiation because of the tumor's size, his relatively young age (he's 45) and the relatively unproven long-term outcome and effects of radiation. The tumor is near the brain stem, they said, but I don't think it's touching the brain stem. Everything I've read on the Internet has supported this - that radiation isn't recommended for tumors larger than 3cm and his is borderline - especially if the patient is healthy enough for surgery. He is in good physical health, so they've suggested surgery. But I have read posts from people who have larger tumors and have done radiation. I'm wondering if I could hear from some of you on what you've experienced or been told about radiation for larger tumors such as this. thanks for your help. Jennifer

jcinma

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Re: radiaton for larger (3cm) tumor??
« Reply #1 on: June 05, 2005, 06:11:02 pm »
Jennifer,
I had a 3cm. with some brainstem compression.  I consulted with 3 different radio-surgeons in Boston, MA and NYC.  Two of the three would not treat me, they said the risk was too high because of swelling that normally occurs with radiation treatment.  The third that said he would treat me kind of glossed over the potential risks.  I ended up having surgery to debulk the tumor that was totally stuck to my facial nerve and then followed up with FSR.  My outcome I feel was very good.
Jane
1cm AN removed (lost hearing) 11/96
3cm reccurrence debulked to preserve facial function 2/05
FSR 4/05
Mass General Hosp. Boston MA

Mark

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Re: radiaton for larger (3cm) tumor??
« Reply #2 on: June 05, 2005, 07:25:40 pm »
Jennifer,

I might suggest that you post your question on the Doctor's message board at the Cyberknife support group site. The address is www.cyberknifesupport.org. Usually one of the doctors who monitor the board respond within a day or so. Generally, 3 cm is considered the "ceiling" of when an Acoustic Neuroma can be treated by radiosurgery. At that size there is typically enough compression on the brain stem or other structures that require physical removal of the tumor as opposed to killing it as radiosurgery would do. Whether that is the case in your situation would best be determined by an experienced radiosurgeon reviewing the MRI scan. Even if it was too large to treat initially with radiosurgery , I would suggest looking into the debulking surgery where the tumor is reduced but not totally removed and radiosurgery is applied to the residual. This reduces the risk of facial nerve damage immensely. As far as the long term effects issue, GK was initially used in Sweden over 30 years ago and to date none of the neurosurgeons I know have seen any studies showing negative effects. According to my neurosurgeon, Steven Chang at Stanford, the most recent statistics he had seen had Surgery and radiosurgery both around 1% incidence for post treatment malignancy. Obviously, continued studies over time will be more definitive, but there is also no strong factual evidence indicating any increased risk to date.

Hope that helps

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

russ

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Re: radiaton for larger (3cm) tumor??
« Reply #3 on: June 12, 2005, 08:43:49 pm »
Hi
  If someone gets around to recommending Gilbert L-e-d-e-r-m-a-n in NYC to attept this, please run away very quickly. He is known to try FSR with much larger ANs than even 3 cm.
  I agree; Debulking first and then followup irradiation of some kind, is a good way to go, unless, of course, the NS is very confident in removing the whole thing at once w/o incurring facial nerve damage. Much depends upon location.
  Best wishes to you!!
  Russ

arcteryx

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Re: radiaton for larger (3cm) tumor??
« Reply #4 on: July 10, 2006, 02:54:52 pm »
It's interesting that 3cm seems to be the cutoff point for radiosurgey, but the major centers appear to discourage radiation treatment even as the measurements approach that point.  My AN actually measured 2.9cm, but most radiosurgeons and all neurosurgeons that I spoke recommended debulking or complete resection.

In my opinion, it's a shame since single-sided deafness is almost a guarantee for all ANs above 2.5cm whereas radiosurgery stands a much better chance at saving hearing.  I see that some people in the posts (above) were directed towards surgery also (in the major centers, at least).  I figured if the doctors at Stanford, JH, Barrows, and MGH were all saying having surgery first, then I should listen to them.  However, after reading some amazing outcomes here (e.g., from RamAir and CC), I'm beginning to question their decision.