My aunt was just diagnosed

[jeansear]

My aunt, who is 72 and has health problems was first diagnosed with a 5mm AN in 2001. She just came back from the doctor where he read her MRI and he said it is now 2CM. She is totally deaf in that ear.
The doctor said it needs to come out. She is afraid of surgery not only because of the complications...but due to her health (asthma, cancer survivor, heart condition and age). Her doctor said at 2cm it is too large for radiation. I saw the MRI and it is pressing against her brain..with fluid around it. He felt it would come out easily because of the fluid.
My questions are: Is it possbile to have radiation on a 2cm AN? Can it arrest its development? How long does she have before she must make a decision to do something? Any other advice would be greatly appreciated.

[jtd71465]

Jeansear-

Are you in the NY area?  If so, try Dr. Golfinos at NYU (http://www.med.nyu.edu/people/J.Golfinos.html). 

Joe-

[jeansear]

Hi Joe-
We are in the NYC area. Thank you for your suggestion. Did he operate on you or someone you know?

[jtd71465]

He and Dr. Roland operated on me on January 10th.  I would see Golfinos first he does both micro-surgery and GammaKnife.  If you want to know more about my experience let me know and I can send you an email. 

If you have any questions you can send me an email at jdombrowski@comcast.net.

Joe-

[Windsong]

Jennsear,

There are many of us here who have had radiation treatment whether GK or Ck or FSR we span quite an age group. My own An was 2.1 x 1.9 at time of treatment and also was on the brainstem. My FSR was five weeks so a total of 25 days of treatment. I saw three doctors and could have had the gK too. Because of my own heart situation and other factors, I did not choose open surgery. The neurologist who found the An was sending me for surgery but when I saw the neurotologist who does that surgery (along with the neurosurgeon of course), he recommended the  radiation so off i went to discuss that with those doctors. It's now more than a year later and so far my An is said to be stable. I'd choose it even now.

The FSR  can spare the nerves as the treatment is fractionated into lower doses as you probably already know from your reading.

I wonder what your aunt's doctor meant when he said there is fluid surrounding her An?

I have read of older people having surgery and being ok but really, in the end, one has to know all of the variables involved etc. I wonder, too, if your aunt has lived with this since 2001, if she had any mris in the interval between then and now.

The cut off point seems to be 3 cm for many. (with radiation)

Also there is a woman i know who has had an An for ages and i do believe hers is a bit more than 2cm yet she has continued the watch and wait for some time. As far as I know it has stayed there. I don't think Antoinette has posted here for some time now though. Maybe she still reads and will see your post.

It might be good to get an appt with a doctor who does radiation so as to see what they say.

All the best,
Windsong

[Sue]

Hi Jeansear,

I had my 2cm AN treated last April via Gamma Knife right after I turned 60.  I was never told if it was real close to the brain stem or not, but my doctor's agreed I was an ideal candidate for radiation treatment.  However, that's not to say your aunt wouldn't tolerate the surgery just fine.  It's not something I would want my 72 year old aunt to have to go through if there was another alternative, though.  But, ultimately, the choice belongs to your aunt (with help and support from family, of course) and her doctors. And, yes, I agree she should talk to as many doctors as she (and you!) can to make sure she does have informed choices, if choices are an option.  Sometimes, there is no other choice except surgery.

I do wish her all the best in her treatment and recovery.  This isn't such a fun journey, but many of us have taken it and are happy to help and support any other's we find along the trail.

Take care,

Sue in Vancouver USA

[kat]

HI Jeansear

I had GK for my 2.2cm AN 23 months ago at the age of 57 . I was told that my AN was pressing on the brainstem and my ENT specialist only recommended surgery and referred me to a surgeon who also more or less said that surgery was my only option . In the end I got an appointment to see if GK would be suitable and not only was it suitable but the opinion was that I could easily wait 6 months before the procedure was carried out . It could well be that in your Aunts case surgery is the only suitable method but I strongly recommend getting a second opinion about suitability for CK,GK or FSR .

Best Regards Kat   

[jeansear]

Hi Sue and Kat
Thank you so much for replying.

 My aunt is wondering about  it growing back. Once it starts shrinking with the radiation isn't there a possiblity of it growing back? I think my aunt's concern is being older, like 80, and it grows back and then she has to have surgery. Has it been your expericence that this is a possibility? How much can you radiate? Did either of you have side effects from radiation?

Thanks

[ceeceek]

Hi jeansere,
ALthough I am hardly the expert on the radiation treatments, I do believe and you should confirm this at the cyberknife support group, that there is just as much of a chance of the growth recurring after surgery as with radation treatment. And even then the stats are very small.
Good luck and I hope she does just fine with either treatment she chooses.
Ceeceek

[Sue]

Hello Jean...

It is my understanding that once the DNA of the AN tumor has been killed, then it has been killed. Period.  Also, it is my understanding that sometimes after surgery, the tumor might decide to take off again, if all the cells haven't been cleaned out of there. 

Also, if your auntie brings this up:   Your chances of getting cancer from radiosurgery is so minute that it isn't even worth worrying about.  She has a greater chance of being struck by lightening, or being run over by a truck on her way to her treatment than getting cancer or being hit by an asteroid. 

Best of luck to your auntie,

Sue in Vancouver USA

[jeansear]

My aunt's doctor said she should use radiation. Can anyone give me the rundown on the radiation process? Also, should the radiation fail can you still have the surgery?

Thanks!

[Mark]

jeansear,

The attached link might help provide you with an overview of radiosurgery. To your second question, yes, surgery is possible later but you will get different opinions as to whether it is more or less difficult. I suspect the talent of the surgeon probably enters into those differing opinions as well

http://www.cksociety.org/PatientInfo/radiosurgery.asp#stereotactic_radiosurgery

Mark

[jeansear]

Hi
My aunt is having the GK on April 12th with Dr. Golfinos at NYU. At her age they felt the GK was the best way to go. They (Dr. Roland and Dr. Golfinos) did say that she could have a side effect of imbalance. Has anyone here had balance problems from the GK and not from the AN? Dr. Roland said she might need a cane to walk. Any imput is welcome. And let me thank all of you for all your support through this ordeal.

[ppearl214]

hi jeansear,

As you may know, acoustic neuromas sit on the hearing (vestibular) nerve, which also handles balance. Regardless of which treatment AN option (microsurgery, radiosurgery, etc), when the hearing/balance nerve is involved, there could be balance issues. There are prescriptions to help with balance.. and I have to say... due to my AN and other physical issues I have.. and being 46 yrs old  , I tend to think of my cane as a fashion statement   It helps me to get to front of lines when need be.

Please make sure she discusses her balance concerns with the dr's/radio oncology  for any potential balance issues, etc). 

I hope this helps and let's see what others have to say as well.... she may or may not run into balance issues, but best she ask and be well informed in advance.

Phyl

[jeansear]

My aunt is scheduled for the GK in the beginning of May. She is very nervous that she will lose her memory, not be able to walk, have all sorts of side effects and never work again. For those of you who had the GK did you have any radical side effects, other than the balance issues, which we already know about.

Thanks again for all your help.