Newly diagnosed and researching treatment options

[lalehjg]

Hello all.

I am a 42 year old woman who was diagnozed with an AN 12 mm by 5 mm this past Monday.  The ENT recommended Middle Fossa, and mentioned that radiation therapy is an option, but that it can cause hearing issues, facial issues, and potentially cancer, and worse of all, it can alter the tumor such that microsurgery may not be as successful later on if needed.

At that point I was pretty much resigned to having brain surgery, and could imagine my brain exposed to light and air during surgery (a funny image still in my head right now).  I was mentally pumping myself up for that.  My gut though said keep researching options anyway, and I've been on this forum many many hours since Monday, looking at people's blogs on surgery at House, reading posts over and over, reading medical articles, etc.  It dawned on me that radiation therapy is not such a bad option for my situation after looking at the info.  In fact, here is an interesting survey from U of Pittsburgh dating from 2002 I believe:

http://www.acousticneuroma.neurosurgery.pitt.edu/docsurvey.html

there is also this link comparing resecting and radiosurgery:

http://www.acousticneuroma.neurosurgery.pitt.edu/or.html

In any event, the links suggests that MOST neurosurgeons, if they had a small/medium sized tumor, would pick radiosurgery over microsurgery, that quality of life after radiosurgery is substantially better than after microsurgery, and that other complications after radiosurgery have such a low incidence that there is not even a comparison with microsurgery.  Microsurgery however i hear is best for larger tumors that are causing sumptoms that hte patient needs to address.

So now, I am totally confused.  Help me understand this jumble of information.

If you had microsurgery, why did you opt for it?  If I have microsurgery, I will go to House.  I know that much.

If you had radiosurgery, why did you opt for that, and what type did you get?  Do you recommend CyberKnife, Gamma Knife, or the other ones the names of which I don't even remember now ... What factors influenced your decision on type of radiosurgery?

Also, does anyone know the following:

  * the name and contact info of a doctor/center MOST experiened with Gamma Knife?
  * same as above for CyberKnife for MOST experienced?
  * same as above for the other types of radiosurgery I don't remember (sorry...) for MOST experienced?

Thank you So much.

By the way, I have been scared *%#&less since Monday, but am taking it one day at a time.

Thank you all.


Laleh

[ppearl214]

Hi Laleh and welcome! (LOVE the name!)

Ok, how about this... first... deep breath!  We're here to help.

Will only speak from my experience.... had CK on my 10mm AN almost 4 years ago...... last year, radiation team deemed me a "done deal", saved my serviceable hearing, got married 6 mos after my radiation, work full time, monitor this discussion forum, life has moved along wonderfully for me in my AN journey.

Great questions you ask.... please take a little time to peruse the forums. Sometimes, it can feel overwhelming, so if need be, take a step back, another deep breath, then keep checking.

Also, please note that "cancer scare tactics" are used all the time when a physician may not be truly versed on current AN radio-treatment options... AN radiation "cancer" outcomes can be counted on less than 2 hands for ALL the AN's treated by radiation.

too many here from all that you mention.... some good, some not-so-good, but we're all doing as best as we can.  We truly respect decisions made by AN'ers, regardless if radio or surgical... it's a VERY personal decision to make and we can only offer insight into our own personal experiences. Nothing more.

Will leave it at that for my response, but did want to say a "welcome" to you... and hang in there. A wealth of info available here... and some really great folks as well.

Again, welcome.
Phyl

[Jim Scott]

Hi, Leleh - and welcome.

I'm sorry you received an acoustic neuroma diagnosis but I'm pleased that you've discovered the ANA website and, specifically, the forums.  I hope we can help in some way.

My AN was 4.5 cm when discovered and surgery was the only immediate option because swelling issues make any tumor much larger than 3 cm too risky to radiate.  However, my neurosurgeon wanted me to have the best outcome and opted to 'de-bulk' my large AN, basically 'gutting' it and cutting off it's blood supply.  That went very well and I suffered no post-op complications to speak of.  90 days later, according to my doctor's plan, a radiation oncologist and my neurosurgeon teamed up and over about 6 hours, devised a plan of irradiation that would spare my cranial nerves and still destroy the remaining tumor's DNA.  Subsequently, I underwent 26 FSR treatments (about 40 minutes each) that had the intended effect.  I suffered no adverse effects from the radiation and subsequent MRI scans have shown it to be efficacious in permanently halting the tumor's ability to grow.  Of course, my AN was very large and this had a direct bearing on the decision to perform surgery rather than radiation.  My point is that every AN patient presents with a slightly different situation (size of tumor, exact location, etc) and every doctor will have a different opinion on how to proceed.  Some neurosurgeons are quite biased against radiation but some are more open-minded. Many of our members, including some of my fellow moderators, have undergone radiation treatment with much success.  You're correct in wanting to gather information on radiation before making a final treatment decision but be advised that, while every AN patient has a slightly different outcome from the treatment, be it surgery or radiation, there simply is no approach - surgery or radiation - that can be guaranteed to be completely successful with no complications for the patient.  However, with a tumor as small as yours, you do have options, including observation ('Watch-and-Wait').  

Try not to be frightened.  These tumors are benign (thankfully) and thousands have been operated on and removed or irradiated.  Both surgical and radiation techniques are more advanced than ever with shorter recovery times and better outcomes for the AN patient.  My surgery and radiation were over 3½ years ago and my life is pretty much the same as it was before my diagnosis.  You'll very likely do just fine and we'll be here to support you all the way.  

Jim  

[JerseyGirl2]

If you had microsurgery, why did you opt for it?  If I have microsurgery, I will go to House.  I know that much.

Hi, Laleh,

I had microsurgery (the translab procedure) at House in January 2008. I don't know where you live, but I live in New Jersey, was quite happy to travel across the country to have my surgery done in California, and would not change a thing about my decision if I had it to do all over again. That being said, I'm sure you've read on this forum about many good AN surgeons throughout the country ... so there are other options.

My AN was not huge (about 1.3 cm); my hearing had diminished gradually over a number of years (I thought I was going to be told that I needed a hearing aid, not treatment for a fairly rare condition), and I had absolutlely no other symptoms. I wanted the the tumor OUT of my head and, frankly, just preferred the concept of surgery over radiation treatment -- to the extent that I didn't investigate radiosurgery at all.

My husband, who's a physicist, agreed with my decision ... but he has since become quite intrigued by the idea of radiation treatment for ANs as a result of attending a couple of talks on the topic (at an ANA/New Jersey symposium), and now thinks it makes a lot of sense. I don't think he would have been able to convince me to change my mind about surgery, though, so I guess that just proves that, all things being equal, surgery vs. radiation is a very personal decision.

Best wishes as you continue your research -- sounds as though you're doing all the right things -- and I'm sure you'll reach the decision that's correct for you. Welcome to the forum!

Catherine (JerseyGirl 2)

[lori67]

Hi Laleh!

I had translab due to size and location, location, location.  Of my AN that is, not my own location.

My AN was 3cm but was quite friendly with my brainstem and needed to be evicted as it was causing problems with my blood pressure and heart rate.  I don't regret my decision, but I will say that if it had been an option for me, I would have gone with radiation.  My plan for life was to leave with all of my original parts... there goes that idea!   

I'm not sure where your ENT got his statistics from, but I've never heard cancer being mentioned as a result of this type of treatment. That doesn't mean it doesn't happen, but I've never heard of it.  Hearing issues are pretty much part and parcel of AN's to begin with and I think the incidence of hearing loss is higher with surgery using any approach than with radiation.  Some doctors are just not as up to date on current radiosurgery options as others.  You need to find someone who can give you the pros and cons of surgery and radiation so you can decide which one works for you.

I think it's a great idea to review all your options.  You're the only one who can make the right decision for you.  Don't be scared - you'll get through this!
Lori (yet another Jersey Girl)

[rupert]

  Hi,     There seems to be much questionable advice about radiation from doctors that do surgery only.   Keep looking at the UPMC  website,   Dr,  Kondziolka has a video presentation that sheds some light on the facts of Gamma Knife vs. surgery.    Not everyone is a candidate of course.    Fortunately there are a lot of facilities that will look at your MRI and give you their opinion without having to travel,   then you can go from there.    Bryan

[suboo73]

Hi Lelah,

I like your name too! 

Here's my 2 cents - my older sister found out she had an AN in June 08 - i had never heard of an AN before that!
But i had the same mild hearing loss and feeling of fullness in the ear for over 12 years, with not one, but 2 ENT's telling me i was just 'getting older.' -( WHAT!? At 40 years young?)
So i went to a new ENT, asked for an MRI and found out the diagnosis in Oct. 08.

Anyway - i have done tons of reading and research and saw several specialists.  However, I don't think i am done researching...
But, if i had to choose today, it would be Cyberknife.  With a smaller AN there seems to be success and still have room if the tumor has swelling.
Since i don't have balance issues and only mild hearing loss right now, i feel Cyberknife would work well for me.

Dr. Steven Chang at Stanford Unv. in CA is renowned of his treatments with Cyberknife. 
But, as you read on, you will find many AN patients here with good outcomes in other locations - doctors with lots of experience in radiosurgery. [see post from Phyl!]
I live in Virginia and there is Cyberknife at Georgetown Unv. Hospital (DC), as well as Gammaknife at UVA.

Trying to decide treatment is the hardest part of the journey - one big roller coaster ride that seems to never end!
It will get better.

Try to take a break from the information overload when you can.

It is a slow growing tumor - and benign.  You have time, so don't let anyone use scare tactics and such.
At my last ENT visit, the well-meaning resident said i should have surgery because i am 50 + years young - ok, nice compliment, but i will decide what treatment i want, not him.
It is my brain!

My thoughts and prayers are with you.
Keep us posted.
We are here for you!

Sincerely,
Sue

[leapyrtwins]

Hi Laleh and welcome 

Have you contacted the ANA for their informational literature yet?  If you haven't, you should.

I'm part of the group that feels that while House is a great place, it's not THE only place for AN surgery, so unless you are in close proximity to Los Angeles, you may want to consider doctors closer to home.  My neurotologist - does both surgery and GK - is local (in my case, Illinois) and I had an excellent outcome. 

As for the surgery vs radiation debate, it's a personal decision that you and you alone can make.

While your AN is certainly small enough to warrant radiation, mid-fossa might be a wonderful option for you especially if you still have good hearing.  You should talk to doctors who do both radiation and surgery in order to get a well-rounded opinion.

I had the choice of radiation and surgery and ultimately chose surgery.  There were many factors involved, but one of the biggest ones was quite simply just wanting the tumor out of my head.  I wanted it "GONE" period exclamation point.  I didn't want to have it zapped and then have to watch & wait to see if it was dying.  I'm a very impatient person, can you tell? 

However, I can't stress enough that this was my decision and although it was right for me - lots of AN patients choose radiation and it's the right choice for them. 

Like Sue said, making your treatment decision is sometimes the hardest part of the AN journey.  It's something the majority of us struggled with.  In the end, a lot of us went with our "gut" feeling when it came to which doctor(s) to use and which treatment to have.

Good luck,

Jan

[DR]

Laleh,

This diagnosis is a real kick in the pants, isn't it?  The good news is that, as you already know, AN are normally slow growing tumors so you are not forced into making a decision in a very short amount of time.  It took me several weeks just to get an idea of what my options were and what each option involved.  And, since it was caught early, you have options and, IMO, all are good options to consider.

There are quite a few excellent suggestions in the posts above, but let me add one of my own.  If/when you consult with a doctor that tells you there is only ONE option (and of course it will be the option they specialize in) take what they say with a huge grain of salt.  I'm sure many of the people at this forum know exactly what I am talking about!  I had one doctor that specializes in GK tell me that I would "...have to be a fool to even consider surgery."  Those were his exact words.  Needless to say it was a huge departure from what other doctors had told me.  That phone consult was the one and only time I spoke with him.

Now please don't take that as a knock against radiation treatment, it is not.  As others mentioned there are surgeons doing the exact same thing when trying to dissuade a possible surgical patient from considering GK or CK.  You just have to be prepared for it and take it in stride.

Sue had a great suggestion about "taking a break from the information overload when you can."  It is easy to get overwhelmed.  There is nothing wrong with taking a few days off.  Sometimes you need to step away from it all and just enjoy life for a few days.  All the information and options will still be there when you return!  I followed this suggestion and it helped calm me down and bring things into focus.

Best wishes,
Dennis

[lalehjg]

Thank you all for your posts!  It is very helpful to have your different points of view.  I really appreciate it, and thank God for this site!    Each of every one of your posts has its own weight and value for me.

I truly admire those of you who went through microsurgery.  I am terrified of it.  Is this normal?  I keep reading posts on here from people pre and post surgery, and I am amazed at how calm and matter of fact and positive they/you are, and admire that very much.  Maybe I just think too much, but I am scared!  I think though that God will prepare me for whatever treatment is best for me.

The other thing is that with CyberKnife, I am trying to find info (mainly medical articles) about chances of regrowth of live tissue after CyberKnife versus chances of regrowth of live tissue after microsurgery. Does anyone have ino on that?  I think that will be the deciding factor for me after gathering all other info.  I have two small kids (5 and 7), and I figured I could buy 10 to 15 years of no tumor growth if I can with CyberKnife, and by that time they'll be close to college, and, if there any regrowth, hopefully medical technology would have advanced to a point where other treatment options may be possible.  We will see.  In the alternative, I may just have to have Dr. Brackman take the thing out.

Thank you all!  I don't know what I would do without this site!

[Deaverd]

Hello Lelah,

I too am searching or researching my options.  My AN is 1.6cm.  The only symptoms I have are hearing loss, headaches about every night, and ringing in my ear.  I went to my first consult with a surgeon.  I had pretty much prepared myself for the fact that I was going to have to have surgery.  This surgeon told me I am an excellent candidate for radiation treatment.  In fact, he told me he would not operate on me because I don't have many symptoms and the risks and the outcome might make me worse than I am now.

Now I started to accept the fact that I might actually have a choice.  I have been researching CK for over a week.  I have an appointment with another surgeon this week.  My questions to him will be, "If I have radiation first is it more difficult to do surgery at a later date?"  If there is not a lot of difference than why not try CK first.

Here is what makes this decision unique for ME.  I am relatively young (45), very active with a physical job, and I am the only bread winner for my wife and three children (12,15,16yrs old).  If I have balance issues or facial paralysis that lasts for over a year i could lose my job.  I may have to sacrifice the unknown long term effects for the known less complications with CK.  I have just about boiled it down to that.

In some ways I wish I didn't have to make this decision but I guess I have to look at it as I am lucky I have a decision and that surgery is not my only option.  It is still very hard and i am right there with you.

[sgerrard]

For lalehjg and Deaverd, some additional info on Cyberknife.

First, the cyberknife patient forum, where you can ask questions and get answers from two doctors who do CK:

http://www.cyberknife.com/forum.aspx

I know lalehjg has already got a question or two posted, and has received some answers. Deaverd, you may want to try it too.

Second, a topic from a couple of years ago, called Cyberknife Info for Newbies. This link should take you to my post there, where I tell the whole story from start to finish, with some pictures, and including the gnarly bit around Christmas 2007. That and some of the other posts may give you a better idea of what it is like to do CK:

http://anausa.org/forum/index.php?topic=3929.msg64193#msg64193

I may have to sacrifice the unknown long term effects for the known less complications with CK.

Statistically, this is a pretty good trade off. The chance of long term effects, though not known precisely, is clearly quite low. The chance of regrowth with radiation treatment is probably a little higher than with surgery, say 2% for radiation versus 1% for surgery. To get any treatment for an AN, you have to be willing to take those small risks, hope for the best, and deal with the consequences only if they actually happen to you. 100% certainty is not on the table, no matter what you decide to do.

Best wishes to you both,

Steve

[lalehjg]

Thank you all again for your posts.  Steve, your insights are very very helpful! 


OK.  Today, my brain was completely fried before my even having had any form or radiation or surgery!!!  

Just went to see a radiosurgeon that my ENT referred me to, first consult.  The radiosurgeon first asked what the ENT recommendation was, to which I answered:  SURGERY.

He proceeded to outline the negatives of CK, including, but not limited to (i'm summarizing his points here):

1.  cancer, for a person as young as myself - with long term effects UNKNOWN - chances: 1/100 to 1/1000 in 20 years or so - likely brain cancer
2.  no chances of shrinking it, size will stay the same
3.  chances of regrowth in my older age, in 20-30 years, for someone as young as myself, and then microsurgery would be a real risk
4.  for the stated radiosurgery control rate is 95 - 98% in 5-10 years:  how does anyone know it's not because a number of these tumors just simply are not growing on their own while still alive?

Mind you he was super nice and spent a lot of time with me, answering all of my questions.  I didn't like what I heard though, I must be honest.  Here's a radiosurgeon recommending microsurgery, because of my AGE, 42.  He said pretty much only because of my age, and because I have vertigo.  Mind you, my vertigo could be caused by my migraine, and the ENT mentioned that as well.  

It's a real tough decision.  Anyone here about 45 or below who went through CK?  Did your radiation oncologist recommend surgery as well mainly because of your age?

I agree though that, when you crunch the numbers, for a tumor the size of mine, radiosurgery is an option as good as microsurgery, if not better in the short term.  I KNOW that.  Just trying to make sense of what I heard today though.  Am I missing something?

Thanks again folks!

Laleh

[jaylogs]

Hey Laleh....so sorry you have to go through this, but I am VERY glad you found this support forum.  As you can see, there's a pro and con to everything you can do for your nasty lil' bugger that's living in your head at the moment.  I can only relay my experiences, for I just had Middle Fossa two months ago at house (I am 45) and I am VERY glad I did, only because I had such a great outcome.  They got all the tumor out and I was able to retain my hearing.  Of course, here's the disclaimer: every case is unique and not a guarantee that you'll have a similar outcome.  I chose surgery VS radiation because as Jan said here earlier...I wanted that bugger out and gone immediately.  Everyone is different on this point so I guess that is one of many factors we all face when deciding.  In the end though, whatever decision you make and if it feel right to you, then THAT is right one...no one can tell you otherwise.  You are asking all the right questions so you can make that all important informed decision, so keep asking and we'll all try to help the best we can!
Best regards, Jay

[Larry]

Lalehjg,

My comments will be biased coz of my experience but i had middle fossa 9 years ago - have had chronic headaches every day since (loads of different treatments all failing) and lost all my hearing in that ear. 3 or so years ago it grew back. i was in watch and wait. i had radiation treatment in April last year and my last MRI indicated no growth which i was pleased about.

Wow, what a jumble of info you have to sort through. Firstly i reckon you should sack your ENt and his sidekick radiation guy and go to some decent doctors.

The cool hard facts (as close as they are available now) are that with surgery, mortality rates are 1 in 500 - Surgeons won't tell youi that. The chances of cancer from radiotherapy is 1 in 100,000 I think was the last stat i saw.

From my observations on this forum and a caveat - I haven't recorded the stats, but people who have translab surgery seem to have more issues with CSF leak and facial paralysis. Middle Fossa and Retrisgmoid surgery tends to leave after effects like headaches and hearing preservation isn't as good as the surgeons tell you it will be. radiation treatment seems to offer the best results. i think there have only been one or two posters with radiation problems and one of those had numerous other issues.

here's the drum. You have probably done as much research and read enough posts to confuse you. I suggest that you seek another opinion for both surgery and radiation where the two people are not linked and when you ask about statistics or they quote you statistics make sure that they give you their stats. Industry stats are a waste of space. Find out how many ops or radiation treatments they have given. When i got my radiation treatment i asked the specialist for his stats on cancer / facial paralysis, nercosis etc.

laz