ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: mnastasi on November 29, 2009, 08:55:50 pm

Title: What do do?
Post by: mnastasi on November 29, 2009, 08:55:50 pm
I was diagnosed with AN 2.8 cm x 2.7 cm x 2.0 cm about 6 weeks ago.  I saw a neurosurgeon who teams with a neurootologist (i saw him too) very early after diagnosis.  I went in unprepared and just listened.  I have since done LOTS of research...I am also lucky to have a brother who is a radiation oncologist (but does not do gamma knife) and a sister who is a neurologist who have helped me tremendously in gathering information.  After deciding that traditional surgery was the right way to go, and making the appt, we had a friend (who is a neuroanesthesia MD) call us asking if we wanted to talk to a radiation oncologist at Wake Forest Baptist Medical Center (we live 5 minutes from there).  My husband talked with the neurosurgeon (who treats with the Radiation Oncologist) who said he would ABSOLUTELY do GK...oh my...I really want this thing OUT of my head...I am not sure I even want to go hear what the radiation guys have to say...i am on an emotional rollercoaster!!  Should I just go with the surgery that I already have scheduled???  or should i go hear what the other guys have to say?  ( I do feel like they will try to "sell" me on their treatment!!)  Thanks for any input..

ps. I am a very active 41 year old mom of 3
Title: Re: What do do?
Post by: leapyrtwins on November 29, 2009, 09:00:16 pm
First and foremost, you need to decide what treatment is right for YOU.   Although everyone is just trying to help, this isn't your brother's or your sister's or anyone else's brain tumor - it is yours.

AN treatment decisions, are very personal decisions.  What is right for one patient isn't right for another.  I chose surgery over radiation for numerous reasons, but mainly I wanted the tumor out of my head.  I didn't want to do radiation and then wait to see if it would die or not.  But - and I strongly stress this - that was just me.  I am 100% sure that surgery was my best choice, but most who had radiation will tell you that they are 100% sure it was their best option.

Don't let others sway you.  Do what you are comfortable with.

Good luck,

Title: Re: What do do?
Post by: mnastasi on November 29, 2009, 09:20:41 pm
Thanks for your quick response!!  I am just ready to make a decision..and stick with it!!  I am really scared and keep thinking "what is something bad happens to me?"  I guess this is normal??

Title: Re: What do do?
Post by: moe on November 29, 2009, 09:29:05 pm
I am really scared and keep thinking "what is something bad happens to me?"  I guess this is normal?

YES this is completely normal! The decision part is the hardest.
 Mine was bigger and pressed against the brain stem, so there was no alternative except for surgery.
Your size is getting  to the cut off point of GK and CK.
Honestly no matter which route you choose, there are going to be side effects to deal with. Nothing BAD will happen, just the normal things that DO happen which are easily treatable and livable post surgery.
Here's praying you make the right decision that is best for YOU!
P.S. Welcome ;)
Title: Re: What do do?
Post by: moe on November 29, 2009, 09:29:45 pm
Glad to know that you are not four years old! :D
Title: Re: What do do?
Post by: leapyrtwins on November 29, 2009, 09:41:37 pm
It's very normal to wonder if something will happen to you.  If you didn't wonder, you wouldn't be human  :)

Just hearing all the possible side effects of treatment - both surgery and radiation - are enough to give a person pause.  You just need to weigh the pros and cons of each treatment and see what you are comfortable with.  You also have to have complete and utter faith in the doctor (or doctors) who will be performing your procedure. 

I was lucky enough to find that confidence and faith in the first neurtologist I consulted with, so I looked no further.  My biggest challenge at that point was deciding between GK and surgery, since he does both.  I initially told him there was "no way" I could have surgery, but a few days later that's exactly what I decided to do and I just somehow knew it was right for me.  When I met my neurosurgeon, it was just the icing on the cake.  My level of comfort and confidence in my treatment option and my choice of doctors skyrocketed - and the rest is history.

Sometimes you just know when it's right; as we like to say here, there's a lot to be said for "going with your gut".

You'll get there; decide what is best for you and don't second guess yourself.


Title: Re: What do do?
Post by: Kaybo on November 29, 2009, 09:44:35 pm
I caught the 4 year old reference too - glad you are "more mature"!!  LOL!!  I would love to be a sounding board for you if you would like to talk to a real person who has "been there" - looks like we are around the same age and I also have 3 kids... would be more than happy to give you a call if you want to PM me your number!

K   ;D
Title: Re: What do do?
Post by: sgerrard on November 29, 2009, 11:01:38 pm
Nothing BAD will happen, just the normal things that DO happen which are easily treatable and livable post surgery.

I like the way Maureen put it. An acoustic neuroma and its treatment can whip up a batch of "no fun" in no time, but you will definitely still be there to complain about it.

If you don't want to do GK, then a measurement of 2.8 cm is big enough to say "too big for GK," and be done with that question. It is about as big as they usually do comfortably, unless there are compelling medical reasons to do a larger one. I did Cyberknife, and I'm glad I did, but mine was less than 1 cm.

I would take Kay up on her offer of a phone call. I have met her, and I'm sure you two 4 year olds would get along great. :)

Title: Re: What do do?
Post by: nteeman on November 30, 2009, 07:56:02 am
FWIW, I had a similar size AN and most of the MD consultations said to do the surgery not radiation. And, in fact, I like you, did want this 'thing' out of my head. That said if you keep looking you will find someone who will offer radiation over surgery. I found someone too who would go with radiation although everyone else said surgery. At that point I had already made up my mind for surgery. Once again, as others have said, you have to choose the treatment that YOU want. If you see enough specialists there will always be at least one who differs from the others, but you need to take in what they all say then decide what you think is right for you.

Good luck,
Title: Re: What do do?
Post by: mnastasi on November 30, 2009, 10:20:40 am
Thanks to all of you...the support literally has brought tears to my eyes! (not too unusual these days).  OK...I am going to call right now and cancel my radiation oncology does not feel right to me..I really do feel like my tumor is too big..and you all have helped so much to confirm that for me.   :) thanks!
Title: Re: What do do?
Post by: Mickey on November 30, 2009, 10:42:44 am
Hi Mnastasi! As a active Wait+Watcher I have had the great opportunity to meet so many AN patients who have done surgery or radiation. I have seen so many positive results. I`m glad to see you have made your decision and know soon enough you`ll be on your way to a speedy recovery. Just a note that nteeman who has posted to you hear is one of the special people who I`ve seen before and after within the past year who is doing great. Best wishes, Mickey
Title: Re: What do do?
Post by: Kaybo on November 30, 2009, 11:15:07 am
Your typing is usually SOOO much better than that - I can't believe that you forgot the number after 4... ::)  Of course, since I am not even 40 YET...

K   ;D
Title: Re: What do do?
Post by: CHD63 on November 30, 2009, 02:07:24 pm
Mnastasi .....

Very late jumping on the band wagon here, but want to add my welcome to ANland.  You have already received excellent advice from others.  I would have to agree with those who said this is a very personal decision.  Everyone means well ..... and it looks like you have many medical experts close at hand ..... but it is your skull and your decision.

Keep us up to date on how you are doing ..... you now have a concerned AN family!   :D

Thoughts and prayers.

Title: Re: What do do?
Post by: mnastasi on November 30, 2009, 02:28:02 pm
Thanks Kay for our chat.. :) I just cancelled my appointments and will be moving forward from now on..not looking back.  Thanks again for all of your support!
Title: Re: What do do?
Post by: Kaybo on November 30, 2009, 03:39:23 pm
Really enjoyed talking to you - hope you got the cable problems solved!!  Please call me anytime!!

K   ;D
Title: Re: What do do?
Post by: Tami on November 30, 2009, 04:28:28 pm
I am new, I just found the site today, I found out on Nov 11th that I have a 2cm AN, I don't know what to do, I am sacred. Anyone from Kansas and know of Dr. Thomas Kryzer?  Thanks
Title: Re: What do do?
Post by: Jim Scott on November 30, 2009, 04:44:40 pm
Hi, Tami, and welcome.

O.K.  Take a deep breath and try to regain your focus.  You've been diagnosed with a small, benign (non-malignant) tumor that has to be addressed but that many people have dealt with before you.  Some of them will reply to you, here.  Take their comments, suggestions and advice seriously as they are communicating with you out of concern and compassion and they know what you're going through because they've been there.  That includes me.  I was diagnosed with a 4.5 cm AN, underwent surgery then radiation and came through it all in pretty good shape, and I was very likely a lot older than you are.  As you'll soon learn, I'm not the only one that has had this kind of experience.

With a 'medium sized' 2 cm AN, you'll probably have the option of radiation treatment, surgery or, perhaps, simple observation via semi-annual MRI scans.  You're not going to die or become an invalid and in a few years, this will likely seem more like a dream than a reality.  For now, it's a very real situation but one that doesn't have to be so scary. We'll help you get through this in whatever way we can.  We've done it many times before with folks from all over the country and even a few living in other nations.  

Consider yourself a part of a very extended but caring 'family'-  and please ask any question at any time and consider these forums as a resource.  You'll be O.K.  :)

Title: Re: What do do?
Post by: Kaybo on November 30, 2009, 04:54:11 pm
Hi Tami~
What part of Kansas are you in?  I am pretty close to Kansas!  I know that this can be a super scary thing, but know that you WILL get thru this.  I would be more than happy to talk with you if you want to PM me your number.

Title: Re: What do do?
Post by: CHD63 on November 30, 2009, 05:10:37 pm
Tami .....

Adding my welcome here to this group of caring and supportive new friends!  You definitely have found the right place for help as you walk this journey.

Take a deep breath and ask any and all questions ..... you are among friends here ..... no question is deemed unnecessary or silly here.

I am not from Kansas but we do have some active members who are.  Hopefully they will chime in here soon.

Most of us will attest to the fact that there are many good AN treatment doctors in this country ..... first in importance (in my opinion) is that the doctor you settle on has had MUCH experience with treating the rather rare acoustic neuroma (vestibular schwannoma).  You want a doctor who has seen many ANs, not just a few in the course of his/her practice.

Looking forward to hearing more from you.

Title: Re: What do do?
Post by: leapyrtwins on November 30, 2009, 10:00:40 pm
Tami -

welcome to the forum.  The size of your AN should give you the option of surgery or radiation. 

I recommend contacting the ANA for their informational brochures - they are very educational and straight forward. 

I don't know any doctors in Kansas, but if you want to travel to Illinois, I know some great ones!

Please don't hesitate to ask us anything; that's what we're here for. 



Title: Re: What do do?
Post by: LisaP on December 02, 2009, 06:17:03 am
Hi Tami and mnastasi,

First of all welcome. Making a decision is hard to do.  I also am Watching and Waiting for a year and a half now dx in March of 08.  I have done allot of reading and research also and still don't know what I am going to do.   Just remember that you have to make the decision that is best for you.   I hope to take my own advise when and if my time comes.

Keep us posted, it is very normal to be nervous and confused.

Best wishes

LisaP ;D
Title: Re: What do do?
Post by: Mei Mei on December 04, 2009, 04:44:28 am
Hi Mnastasi,
I was all set with my Jan 12th surgery date as Johns Hopkins and then a friend of a friend from Delaware called last night on a lengthy phone call with all the benefits of radiation at the University of Pittsburgh.  He made me feel so scared of my surgery that I was so ready for.  I'll call tomorrow for a third opinion at the Univ. of MD to double check, but I trust my doc at Hopkins and he said the position of my AN was such that it would cause a stroke.  NOT a good thing.  Even radiation can't move the position of a tumor is my common sense to this one.   You have to go with your gut and trust your Doc.   Like they all said we're not 4 anymore and these ANs really are grown up stuff.   Hang in there with your decision.   You've found a great community!!!!
Mei Mei
Title: Re: What do do?
Post by: leapyrtwins on December 04, 2009, 03:15:49 pm
Mei Mei -

did I read your reply correctly?  Have you decided against surgery?

Title: Re: What do do?
Post by: Mei Mei on December 04, 2009, 07:37:45 pm
No, this man wrote to me a lenthy letter and really made me nervous and I couldn't sleep all night about it so I called me ENT this morning that first diagnosed me and he calmed me down and said the man's AN is different than my AN and that I have to take the advice of my Docs because they are looking at my scans and records.  This man went to Germany for the Gamma Knife and is encouraging me to send my records there for a free second opinion.  I really can't pick up and go to Hanover, Germany with all my responsibilities here, my95 year old father.   This website he sent me for Pittsburg also looked interesting and showed them to be leaders in radiation, but I have a small tumor and am symptomatic on my face and feel dizzy at times and that's not good.  I really think radiation is not agressive enough for me and with a small tumor the chances are the outcome will be better.  This man is a very strong supporter of the radiation and he's making me nervous.  I've got to sleep well tonight.

I just won't feel at peace till this is all over.   Talk to you later and thanks for your reply.

Mei Mei
Title: Re: What do do?
Post by: CHD63 on December 04, 2009, 08:36:14 pm
Mei Mei .....

Somehow I missed all of your posts until just now ..... so sorry ..... and a very belated welcome!

I read your posts, but I did not take time to read all of the other answers.  Just wanted to add regarding the "friend" who is putting pressure on you to strongly consider radiation ..... this is your decision and no one should try to sway you to one treatment or another, not friends (however well-meaning), not medical people, no one.  You have done your homework and you are smart ..... trust yourself and you will know what is right for you.

By the way, my daughter is an ESOL teacher in Atlanta (currently a stay-at-home mom for a few years) so she especially can empathize with your concerns about being out of the classroom for a couple of months.  Many of these students become very attached to their life-line to English ..... but they will do fine and so will you.

Thoughts and prayers that you will trust yourself and relax about your decision.

Title: Re: What do do?
Post by: sgerrard on December 05, 2009, 12:06:34 am
Mei Mei,

As a radiation patient myself, I am all in favor of radiation treatment when it fits the AN and the patient. But it is silly to suggest that surgery is not a good option too. Lots of people have surgery and plenty of them do quite well. There are risks and benefits either way. I think it should be viewed as a choice between two good options for treatment, not as a good option versus a bad option.

So tell your "friend of a friend" to take a hike.  ;)

Title: Re: What do do?
Post by: Mei Mei on December 05, 2009, 06:42:11 am
Dear True Friends,
I will do that.  I was so hyper with all this information last night, but finally settled down and got to sleep.  The letter came from the neurosurgeon about the date of surgery and warnings of what not to do and wear, etc.  The reality is setting in.   I'm getting ready for the big day.  I think I'll go out today and prepare for Christmas;  sounds like a good diversion.
Talk to you later...Friends!!!!
Mei Mei