radiation for An residue

[becknell]

Well I've been thinking about this for 3 days so I'll post it here. Hubby who had 3.5 cm AN removed at Duke in August had 6-month follow-up appointment with neuro on Tuesday. In the surgery, the neuros left some AN residue (2-3mm) along facial nerve and on brain stem (1mm)  because it was totally stuck there. New MRI shows the residue has not grown, but NS wants my husband to get radiosurgery on the residue. Husband is 45 and the neuro says "you're gonna have to deal with it sooner or later and it's better to deal with it now while it's small." He said he would not recommend more surgery because the tumor was so stuck there, he said, "I don't think we could do any better than we did."

So the neuro, who is a top guy in his field, recommends 2 options: Either LINAC at Duke or GK at Univ of Va. Recommends both highly, has sent patients to U of Va. for  years with good results, but says the program at Duke is good, too. In fact, he said if he was him he'd have it done at Duke because he knows the folks there. Of course. But the LINAC at Duke is not "dedicated" to radiosurgery, which is a concern to me, as I read that "dedicated" LINACS are more accurate that non-dedicated units.

He did say that there is a "very small chance" of malignancy resulting from radiosurgery, but not enough to be a deciding factor. Although he said he has one case right now at Duke of a benign tumor, actually a trigeminal schwannoma, that became malignant from radiosurgery. I thought this was almost unheard of. But evidently is does happen in "very rare cases," as he said.

Hubby's hearing is gone on left side, and I posted a question on the Ck site asking if CK would be appropriate in this case and the CK doctor responded that the primary advantage of CK is hearing preservation, which is a non-issue here. That CK doctor also said the GK program at the U of Va. is one of the most experienced in the world.

So I'm leaning toward GK at U of Va. Although my husband would really just like to get it done at Duke, because it's closer to home, and would therefore be more convenient, especially since we have small kids. But their radiosurgery program is not as renown. Wonder how much of a difference it would make in one place or another. Advice and thoughts? I'm thinking out loud here. Jennifer

[russ]

Hi Jennifer
  To my knowledge, GK is common follow up to surgery.
  Of course there is reasonable added risk to treating the few mm. you are talking here.
  My personal feeling is that I wouldn't jump at this point just because Dr is so convinced in his mind you need to.
  A 6 month follow up MRI is not totally innapropriate before commencing more Tx.
  Neurosurgeons do sometimes have a tendency toward 'immediacy'.
  Best wishes here!
  Russ

[Mark]

Hi Jennifer,

First, I would agree with the perspective Russ expressed in his post.

It is increasingly common for large (> than 3 cm) AN's to be debulked to a point of not risking surgical damage to the cranial nerves and then follow up with radiosurgery to kill the remaining tumor with greater probability of nerve function being preserved. IMO, The NS made a good choice not to push forward with surgical ressection when it was clear nerve function would be jeopardized.

That being said, with such minimal tumor remaining and no growth being observed after six months I would be hesistant to jump into a radiosurgical option at this point. I tend to think that NS leave some residual tumor in surgery more often than many on this board would want to believe. In most cases where that occurs the NS clearly tries to "devascularize" the remaining lesion and cut off it's blood supply. Where this occurs the tumor dies and everything is fine. When it doesn't occur and the blood supply continues into the tumor , then there is regrowth. With only 1-2 mm left I would hope that he may have successfully cut off the blood supply and what's left is dead and I would certainly wait until an MRI showed conclusively new growth. At six month intervals it would be hard to imagine it would jump to more than 3-4 mm in that time frame and then your course of action is easy.

If your husband ends up doing radiosurgery I would definitely use a GK or CK. As Dr. Medberry responded to you , UVA has a great deal of GK expereince and would be a great choice. Given the small size I personally would not opt for another type of machine because none will match the GK / CK level of accuarcy which would be important in that small of a treatment area. The choice between the two becomes whether the GK head frame is undesirable since CK doesn't need one or if you feel that staged treatments would give better odds of not damaging the facial / hearing nerve further than one large dose. CK can do staged, GK can not.

Hope that is helpful

Mark

[kat]

Hi Jennifer

Just a quick note . When I had my GK I was more comfortable to travel here in UK to Sheffeld because they were
the most experienced team in fact they have patients travelling  from all over Europe and beyond for GK . I was very impressed by thier professionalism and when I had some headpain 7 months later I got an appointment within a week to see a specialist there. As it turned out the pain was not anything serious but it was good to be seen so
quickly. I would definately go for the more experienced team since you can only do it once and feeling confident with your team is so important .

Regards Kat