Radiation or Surgery?

[nic101]

Hi I am a 39 yr old mother of 2 boys. I have been diagnosed with an AN that is 14 mm. I have seen a ENT surgeon who is recommending a Translabrynth Craniotomy. I went to my Neurologist appointment yesterday and he suggest that I look into Radiation Therapy. I will meet with the Radiation center within 2 weeks. This is a tough decision for me. I was so happy when I found this group and others that understand what I am going through. I would love to hear from others that have either procedure done to get some more insight. Thanks Nicole.

[Ned]

My tumor was similar in size to yours. My ENT highly recommended surgery, I vascillated between surgery and radiation for weeks.  I would leave a surgeons office convinced of surgery, then meet with Radiologist and decide on radiation.  I finally decided on radiation and have never regretted. I determined that if the radiation for some reason didn't work I could always do surgery.  The surgeons would argue that operating on a tumor that had been radiated was more problematic. My biggest complaint was not being told of potential post radiation issues like tumor swelling. Now, 11 years later, tumor shrunk about 40%.

[john1455]

Reading this: http://www.myacoustic.org/ helped me tremendously on choosing the right treatment for me and maybe it will help you decide as well. As I did my research and saw what side effects those who chose surgery went through, it was a no brainer for me to eliminate surgery as an option.

Dr Steven Chang at Stanford, who does both open surgery and CyberKnife, has in the past given free reviews of MRI/CT scans and offered his opinion on what he feels would be appropriate treatment. House in LA also does this but they will invariably recommend surgery because that is all they do. It would be in your best interest to seek consults from neurosurgeons who do both radiation (radiosurgery) and open surgery (microsurgery) in order to get an unbiased opinion. Doctors tend to recommend procedures they are comfortable with but that may not necessarily be what is best for the patient.

Here is another video worth watching: http://www.youtube.com/watch?v=ZbS4K9ENMAg

Good research will involve reading as many posts on this forum as possible and seeing what posters went through as well as what side effects they had. The anausa.org site gives an excellent summary of all treatment options available as well as the side effects to expect from each (use the "OVERVIEW" pull down menu). They also have a list of neurosurgeons and facilities that meet their selection criteria.

I chose radiosurgery (CyberKnife) and although it may be early yet, I feel the same as I felt pre-treatment with no fatigue issues and it has been 6 weeks since I completed CK. The first couple of days, my symptoms (tinnitus and balance) got just a tad worse but after that, I was back to my new normal. A common scare tactic by those who only do surgery is that radiation may cause future malignancy. However, the chances of that happening is extremely rare. It will be a hard decision to decide which treatment will be best for you but doing the proper research should lighten the load.

As Ned pointed out, there will be swelling of the AN after radiosurgery and that is perfectly normal. Radiation kills the tumor but tumors die slowly over time and not all at once. AN treatment, whether it be open surgery or radiation, will not likely eliminate any pre-treatment symptoms so be prepared for that.

[v357139]

At that size it does make sense to explore both surgery and radiation.  You might even have the option of wait and watch, if it is not growing and not causing you any problems.  I would get opinions from very experienced doctors with great track records in surgery, and in radiation.

I offer these points, which are by no means all inclusive.
Radiation does many times have very good tumor control and avoids certain surgical risks such as CSF leaks.  It does not get rid of the tumor, but stops its growth.  After successful radiation, sometimes it shrinks over time and sometimes not.  Sometimes it swells before dying.  It takes months for the doctor to know if it worked or not.  Surgery is more final.  Weighing this may help you as you see doctors.

Again, make sure you talk to very experienced doctors, with great track records.  That will give you the best info for you to weigh.  Keep us posted.  We are here to help.

[Kat From Indiana]

Hi. I  was diagnosed March 27, 2014 with 8mm x 3mm x 4mm AN. I am 55.  As I was looking at my options, I was looking closely at surgery and did not even want to consider radiation.  I saw an ENT (surgeon) 3/29.  He recommended watch & wait.  He did not want to talk about treatment options, but I did get him to tell me that his surgery of choice is Retro Sigmoid.  The ENT said to have a second MRI in 6 months.  He said not to rush into anything because no matter what, I will lose my hearing.  He said to just enjoy it while I have it.  My hearing loss in right ear is only about 15% lost, but I am useless on the phone with my right ear.  Next, I went to a neurosurgeon.  He said that radiation is the best for me.  He wanted me to see a radiologist.  This was the first time that I actually slowed down enough to give radiation a serious look.  I have an appointment with a radiologist this coming Monday.  I too have looked at the quality of life issues after surgery and it appears to me that surgery has more problematic after effects than radiation.  I won't lie, I have some real concerns for the after effects of radiation down the road and the idea of semi-annual and annual MRIs doesn't thrill me.  Even so, I think I'll take a leap of faith and try to put my trust in radiation.  Now I am trying to decide between Gamma Knife or CyberKnife. Everyone here knows how hard this decision is for you.  Sending good thoughts and prayers your way.

[leapyrtwins]

Treatment choice is often the hardest part of the AN Journey.

Since you were given the choice of radiation or surgery, the decision depends on you and what you want.  A lot of people might have input - docs, family, friends, etc., - but in the end you need to do what you think is best.

My doc flat out refused to make the decision for me because he felt so strongly that it was my choice.  That totally frustrated me at first, but eventually I realized I was looking for an easy "out".  In the end I realized he was absolutely right by "making" me decide.

My first impression was that I'd do radiation; in fact, I said there was "no way I was having surgery".  But as I weighed the pros and cons of each treatment, I knew that I just wanted the tumor removed - couldn't "live" with the knowledge that it was still inside my head.  I'm also very impatient and I knew I couldn't wait for it to (hopefully) die through radiation.   So ultimately I chose surgery.  That was my choice and I'm very happy with it. 

I have to say though, that radiation is an excellent choice and people who choose it are very happy with it.

It's a very tough choice, but the decision is yours. 

Good luck,

Jan

[cagneyd]

I went to a neurosurgeon who said he did not recommend surgery because the tumor - 1.2cm was small enough. He said he was fine with either watch and wait or gamma knife. After researching the gamma knife option and thinking that if I waited, the tumor would likely keep growing and that even after the gamma knife the tumor could grow more for a while, I decided to go ahead and get the gamma knife right away since it was likely that it would happen down the road. I felt that the earlier it was attacked, the sooner it could begin shrinking.

Its been 3 weeks since I had it so I don't know what the end result will be. But I feel confident that I made the right choice.

Bottom line is YOU must feel comfortable with the choice. Find out as much as you can about both options.

Good Luck,

Dan

[Bonnie B.]

My AN was 1.7 cm.  I researched every possibility and spoke with everyone I could.  I decided on Gamma Knife.  That was two years ago.  I go every year for an MRI and so far the tumor has gotten smaller.
Just do your homework and chose what's best for you.  Keep us posted.

[john1455]

I found this story and thought you might be interested in it -

http://www.cyberknife.com/patient-stories/all/suzanne.aspx

[JeanneR]

I'm recently diagnosed with an Intracochlear  AN and going thru the same desision making process.    What has me bothered is that many of the medical articles  suggest radiation treatment for those  60 and older  because they don't need to worry about the long term effects from the radiation,  20-30 yrs from now. I guess I'm offended by this thinking.   I'm 62 so who cares if I survive?  Who cares if the radiation causes problems?

I'm 62.  Mom turns 95 this yr.,  her mother passed a few months short of 100.  If my financial planner takes longevity into account why wouldn't medical decision making?   

[Petrone]

Hi Jeanne,

I don't think anyone is suggesting that undergoing GK will result in a "death sentence" 20-30 years out. Obviously, there has to be some long-term risk attendant with receiving radiation 1 or 2 centimeters from the brain-stem. For some of us, however, it's a measured risk and one that we accept.  The alternative courses of action (or inaction) have their own risks too.  Personally, I opted for GK last year (at age 51) and have no regrets whatsoever.  I'm on with living my life and way too busy to worry about what may or may not happen 20-30 years from now.   

I wish you all the best,
Petrone 

[michelej]

I thought about both and read up on everything I could find. I decided on the translab. surgery. My hearing is shot pretty much on the right side anyway and this way should not cause headaches because the don't have to retract the brain to get it. I was concerned because of radiation and it growing before it died out. I was afraid I would get symptoms involving my face or something when it grew more. I only have a minor balance problem now. I wasn't interested in getting MRIs forever either and the idea of it becoming malignant later on or other spots accidentally getting radiation didn't interest me. The radiation would be much easier in recovery time but I am hoping that if I get it removed or almost all then when I am older (I am 52 now) that radiation could be done on it once and that would be all I ever needed if it did regrow. I wasn't sure about having an operation on something that they had done radiation on previously either. I think this is a terribly hard decision and one that I hope you have good luck in making. My surgery is tomorrow so I am sort of starting to freak out. My tumor is approx 20 mm. I have had it for three years but didn't know it. They missed identifying it on my first MRI. It has grown 7 mm. in three years so I figured it might be time to get it out. Good luck.

[stoneaxe]

I think the decision process is definitely one of the most agonizing parts of the journey. Everyone's mileage will vary. There seems to be far more data available now as to outcomes and side effects. Do all the research you can and make an informed decision based on your circumstances, that's all you can do. Nobody can really make the decision but you.

Statistics only tell part of the story though. I made my decision to go with radiation (proton beam) based on the statistics showing a better chance for quality of life after. I was a young 48, active, and wanted to stay that way. As it turns out I was off the bell curve with my radiation results. Balance problems were particularly bad, vertigo, headaches and tinnitus too. I managed to get my balance back close to normal with extreme PT (standup paddleboarding) but the rest remained. My tumor started to regrow 4 years later and I decided to have it taken out the 2nd time. Balance actually improved after surgery, headaches lessened but can flare up, particularly sensitive to weather changes....and red wine... . The tinnitus changed tone but is still there, white noise now. Left side of my face has a slight weakness and synkenesis (I cry when I eat, especially hot stuff... ).

Everything considered I don't think I would change any of the decisions I made. I did the best with what info I had and what I hoped for an outcome. It didn't work out perfectly but how much of life does?

The toughest thing you will face is how you react to it. Do you let it beat you or do you knock it on it's ass and kick the crap out of it? Almost everything else is out of your hands but THAT you can do something about. I consider myself ridiculously lucky but I can actually say life is better as a direct result of my AN. Where I am now never would have happened otherwise. This isn't a lemon that can easily be made into lemonade but it can happen.

FWIW....... in my case my Doc (Dr McKenna at MEEI) said there was no problem with the surgery from the radiation scars.

[MDemisay]

Dear Nic101,

SLOW DOWN!

You undoubtedly met already with the radiation center.
 Please consider getting at least 3 opinions from what you consider the best with either approach you take.

 In my case, I delayed my decision for 7 months with a 3cm tumor the size of a golf ball. I got 14 opinions! Surely, that is too many but then again I wasn't aware of this site till 2012. In 2012, I didn't want to put myself through that traumatic experience again of selecting among 14 so I settled for a minimum of three. I ended up going with the original because I felt the most comfortable with him.

In the end in 2004 and 2012, I went with my gut instinct and a lot of prayer!

Obviously, we all want the best care for ourselves but once it's done (whether surgery or radiation is chosen) it's done and you will have to live with the consequences of a hasty decision. I know brain surgery or radiation is a tough nut to swallow with 2 children. The decision is not short term the decision is long term!

Whatever you decide, SLOW DOWN!

I will be praying for you.

Mike