Debulking followed by Cyberknife

[DarleneN]

Hi Everyone,

What have you heard about the advantages and disadvantages to having the initial AN surgery taking out 90% of the tumor and have Cyberknife procedure remove the rest of it later?

Thanks,
Darlene Newton

[epc1970]

Hi Darlene
That is becomming the standard of practice for larger AN's. I know Jim ,for example, had debulking surgery followed by FSR for a 4.5 cm AN and is doing phenominally well.  The surgeon will be able to get what they can of the tumor without damaging the facial nerve and then treat the remaining tumor with radition which will stunt further regrowth. How are you and your son doing?

[leapyrtwins]

Darlene -

as epc1970 said, this is becoming standard procedure for larger ANs and it worked very well for Jim.

I don't know that there are any disadvantages to this - other than cost, as I would assume it means the patient has to pay for both surgery and radiation.  I don't know what radiation costs, but surgery typically costs in the neighborhood of $100,000.  If your son has insurance coverage, his cost will obviously be much less.  My insurance company paid for my entire AN surgery - as well as my entire BAHA surgery nine months later.

Jan

[clr]

Hello Darlene,

That was the plan for my daughter. She was to have 2 debulking surgeries followed by the cyberknife. She ended up needing 3 surgeries which is quite unusual. After her first 2 surgeries, her face came back to normal within weeks. However, I think that is why she needed the third surgery because they left too much near her brainstem and facial nerve. Her face is still droopy. When we go back in February we will see if anything can be done. 

She has insurance but we received a bill for her 3 cyberknife treatments, it was $6700.

Cindy

[Jim Scott]

Darlene ~

As others have noted in previous posts, I underwent the tumor de-bulking surgery and suffered no complications.  Three months later, as planned, I underwent 26 FSR treatments.  My last MRI showed the beginnings of necrosis and shrinkage of the remaining tumor.  All of my rather severe AN symptoms disappeared almost immediately following the surgery, which not only reduced the size of the AN but cut off it's blood supply.  The radiation treatments were totally painless and I had no complications.  Obviously, I'm very pleased with this outcome and I feel very blessed.  The total cost was approximately $250,000. -  and well worth it.  My insurance (Blue Cross) covered almost all of my expenses for both the surgery and the radiation.  I paid off the remaining bill over time.  Today, I'm doing great and owe nothing to the doctors or the hospital.  I certainly can't complain!

I believe that this de-bulking/radiation procedure will become more commonplace on large ANs as the protocol shows positive results.

Jim