Gamma-Knife for 3,3 cm in Us ? Not in France...

[frenchgirl]

Hello
First of all, sorry for my English, I'm French ... I'm 30 years old, I live in Lyon. I was diagnosed with an AN (3.3 cm) and the doctor recommend me a surgery. There is also in France Gamma Knife but only for tumors less than 3 cm. In the United States, do you know cases where the Gamma Knife is used for tumors like mine? Thank you for your help and hello from France !
Mélanie

[LakeErie]

Frenchgirl, the rule most commonly used in the USA on cut off size for Gamma Knife is 3 cm. Stanford Medical Center in California is the best known practitioner of Cyber Knife and they say it is "generally" used on lesions less than 3 cm. "Generally" seems to imply, to me anyway, that there are exceptions to the less than 3 cm rule.

[SP]

Hello Mélanie,

I'm sorry you're going through this--its a tough diagnosis to deal with and deciding on a treatment is difficult. The most common advice for this size of AN tumor is of course surgery. I live in Sydney, Australia, and I investigated several alternatives for me and found that Dr Lunsford in the USA agreed with the Gamma Knife for me, in the end I chose Cybernife at Stanford.
The doctors at Stanford have performed Cyberknife on many tumors over 3.0cm (and  thousands of AN's in total). It is expensive as an international patient, but perhaps worth investigating if its suitable for you.

I wish you well,

Stella

[rupert]

The two doctors mentioned, Dr. Lundsford at University of Pittsburg Medical center. (UPMC) and Dr. Chang at Stanford on the West coast are the ones to consult with about this.   Sometimes these things are measured differently by different radiologists and doctors.  Your AN might be smaller or larger than 3cm depends on who measures it.  Remember they are 3 dimensional and not just one measurement.  Volume is also important.    I would also point out that at your age,  it is very common to debulk the tumor down to a smaller size thus putting less risk on the nerves involved. Then following up with Gamma or Cyber knife usually 6-8 months afterword.

[frenchgirl]

Bonjour,
First of all, thank you for your answers, Rupert, Stella and LakeErie ! I don't know exactly how to answer separatly, so I write a commun answer, sorry.
It is so important to discover that I am not alone and that it is possible to have news from others people who know this sickness.
So, if I understand correctly, before accepting the surgery, I still have to learn more about the possibilities for the gamma knife ... but probably, I will have surgery ...and  GK (or CK)! Actually, the surgeon told me that he thought, if possible, not to remove the whole tumor so as not to damage the facial nerve, and then use CK. In Lyon (my city), there is only CK and so I will have to meet a surgery in Paris (GK) to understand what is the best.
In France, everything is paid for by the social system (the State), fortunately because I am a bookseller in a small bookstore and could not pay me expensive care.
I have two other questions: in some cases, is it possible to have GK or CK before surgery ? And can CK or GK reduce the size of large tumors or just stop their expansion?
Thank you !
Merci beaucoup !

[chelsea]

Hi Melanie,

Just wanted to say hi as another newbie... I am also 30 years old, female... my AN was diagnosed at 2.5 cm, so a bit smaller then yours, but I am just waiting for next MRI to reveal any changes :S

I am also having to decide between treatments and having a hard time.
Also to answer your question on your last post, I think it is very possible to do GK or CK before surgery... some have told me that it is a bit harder to do surgery after the radiation but other doctors have told me it makes no difference. I think the radiation is supposed to stop the growth and potentially reduce the size of the tumor, but not sure about how much it is supposed to reduce it.

I am in Canada (far from you) but if you want to chat anymore, please pm me and I can give you my details to find me on facebook or something.

Thinking of you!

[frenchgirl]

Hi Melanie,

Just wanted to say hi as another newbie... I am also 30 years old, female... my AN was diagnosed at 2.5 cm, so a bit smaller then yours, but I am just waiting for next MRI to reveal any changes :S

I am also having to decide between treatments and having a hard time.
Also to answer your question on your last post, I think it is very possible to do GK or CK before surgery... some have told me that it is a bit harder to do surgery after the radiation but other doctors have told me it makes no difference. I think the radiation is supposed to stop the growth and potentially reduce the size of the tumor, but not sure about how much it is supposed to reduce it.

I am in Canada (far from you) but if you want to chat anymore, please pm me and I can give you my details to find me on facebook or something.

Thinking of you!


Hello Chelsea,
Sorry that you have to  fight against an AM also...When did you know that ?
I will have several medical apointments these 2 next weeks, I probably will have a better view of the situation after. I let you know.
Not the best way to start the new year but as we say in France, "Hauts les coeurs" !  Something between "Be brave" and "take heart" I guess...
Bonne journée
Mélanie

[Jet747]

Melanie,

What a small world...I just returned from Lyon.   I work out of Chicago, USA but we also have offices in Lyon (Cite International).

I had retro sigmoid surgery in May of 2015 where the surgeon reduced the size of the tumor.

Then I had GK 6 months later.

I'm approaching 3 years post surgery and everything good so far, I've even managed to keep my hearing on my tumor side.

Good luck with whatever choice you make!
Jet


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