surgery versus radiation confusion

[simonkoch]

In the last 2 weeks I have been diagnosed with a 2.6cm AN.  I'm a 37year old professional engineer interested in continuing my career and being around for the next 20 years to raise my 2 young children. After discussions with my ENT and neurosurgeon and research on the internet I was Translab was recommended and is booked in for 2 weeks time.  Following my surgeons recommendations however I visted the radiotherapist today, and was sold the benefits of radiation treatment over surgery.  Following this meeting i am thoroughly confused as the draw backs and risks  discussed during the meeting were in all areas looked worse with surgery then for radiation.  My current situation is some loss of hearing and minor pressure in left ear noticed over last 6 months, last 2-3 weeks symptoms have rapidly presented themselves (which led to the MRI), including regular dizziness, loss of taste to half my tongue, some loss of sensitivity to half my face, continual ringing in the ear and fullness in the ear.  From speaking with the various doctors the rapid esculation of symptoms is unusual for AN?  Radiotherapist downplayed any long term risks of cancer as being almost neglgible.  If this is the case, I am wondering why my people have surgery than radiation? Also a consideration for me is that the Translab will destroy the remaining hearing I have while radiation could save what is left.  Any advice would be welcome as prior to this consultation I was convinced the Translab was the right approach in my case based on age, size, acceleraion of symptoms etc

[robinb]

Hi Simon-

If this is the case, I am wondering why my people have surgery than radiation?

That's the big question. I still wonder the same thing. You are stuck at the crossroads of having to make the decision that you believe is best for you.

If you read through threads you will find that surgeons will tell you surgery is the best outcome and those that specialize in GK, CK, etc. believe that is the best way to go.

Your AN is larger than mine, but I ruled out surgery pretty quickly.

All I can say is talk to as many people as you can and make sure you are consulting with the top docs in the US for each procedure. All will review your MRI's at no charge if you send to them. PM me if you would like to talk.

[Anne S B]

I had Cyber Knife over three days in August at Johns Hopkins Hospital.  For me there was no problem choosing CK, as I depend on one eye for vision (the other is not strong).  Since my dominant eye is on the same side as my AN I did not want to run the risk of losing facial muscle function and the use of my good eye.  My recovery has been good, mainly balance issues, feeling of pressure in my ear, and tinnitus.  I did, however, lose most of the hearing in that ear.  If you do opt for radiation be sure you go to a facility that has done many procedures and a doctor who is likewise experienced.  Good luck.
Anne S B

[Jim Scott]

Hi, Anne ~

Congratulations on your successful CK procedure and thanks for sharing your AN experience with us.  Your advice to chose a doctor with extensive AN treatment experience is astute and appreciated. 

I trust that your recovery will continue apace.

Jim

[ASG]

Hi Simon,

I was in a similar situation as you when I was diagnosed: 31 years old, 2.9cm AN, young child, some hearing loss and balance issues.

Deciding between surgery and radiation was one of the most difficult decisions I've ever made.  It took about three months and multiple consultations to get to a place where I knew in my gut what was best.  My consultations included the original ENT, Dr. Thompson (neurosurgeon at U. Michigan), Dr. Slattery (surgeon at House Clinic), Dr. Steven Chang (CK radiosurgeon at Stanford), and Dr. Lunsford (GK radiosurgeon at UPMC).  I also went on pubmed/google scholar and read a lot of published data on surgery and radiation outcomes.  I ultimately decided to have GK at UPMC with Dr. Lunsford, and I still feel this was the very best for for me.

Why doesn't everyone get radiation?  In my opinion every AN patient is different (age, co-morbid health conditions, tumor characteristics), and everyone has their own perspective on the risks and benefits of different procedures.  I also wonder if access to information prevents a subset of AN patients from considering radiation.  In any case, radiation use for ANs continues to increase, and both are considered viable options for many patients.  For me, time and talking with lots of renown doctors with different backgrounds was essential for sorting through the confusion.

Good luck in your decision making and please PM me if you'd like to talk further.

[Cheryl R]

Simon,  What kind of treatment to have is such a individual choice and a hard one for some.        One's personality type can play a part along with where you live and what is closer to you.      Plus the whole tumor size and location.         Some people can just not stand the thought of a tumor still there  and not removed.        Many people do do well from surgery and not  hang around here on the forum for long.            One is told all kinds of risks possible but that does mean you will have them.                    I have had surgery done as in time I was found to have NF2.     This is very rare but in my own case was what did work best for me.              The not knowing what can happen in the future involves everyone and even having radiation still may mean one has to have surgery in the future.                       Good luck with your own choice and hope it goes well.                      Cheryl R

[leapyrtwins]

Just wanted to echo what Cheryl said.

Treatment is an individual choice.  I was given the choice of radiation (GK) or surgery by a neurotologist who did both so I was very well informed about the pros & cons of each treatment.  Although my first thought was GK, I ultimately chose surgery and it worked very well for me.  And my personality played a huge part in my decision - I'm a very black & white type person; not a lot of grey in my life.  I was also one of those who just wanted the damn thing out of my head; wanted to know it was gone, not hedge my bets that it would stop growing.

Not to knock radiation at all - it's the best choice for a lot of people - but surgery was the best choice for me. 

To each his own 

Jan

[simonkoch]

Thankyou for everyones responses. 


Jan, i would be interested to know more about your particular AN. Did you have rapidly developing symptoms given the large change of your tumor over the 6weeks between between mri and surgery (1.5cm to 3cm).  I am wondering whether i am dealing with an unusual fast growing tumor.  The majority of my symptoms have presented only 3 weeks ago  and possibly are getting progressively worse. Everthing from unusual taste on left side if tongue, continual tinnitus, facial numbness, loss balance and regular diziness.  It is these accelerated symptoms that are driving me towards surgery.  To confuse the situation a bit, the specialists are oing some backgroud work on an sarcoid connection as well, which is something i dealtwith about 6 years ago

[leapyrtwins]

Simon -

answered your email yesterday, but wanted to respond here also in case anyone else wanted to know my answer.

Neither I nor my doctors (neurosurgeon & neurotologist) had any idea that my AN had grown in the 6 weeks between my diagnosis and my surgery.  I didn't have any additional symptoms than I started with (fullness in my ear, diminished hearing, and balance issues).  My symptoms didn't get any worse. 

Neither of my docs had any idea why my AN grew so fast either.

Jan

[james e]

Hi Jan. Good to see you are back.

My experience was the same as yours...how will I have this treated! I made a Ben Franklin list, good vs the not so good of radiation vs surgery. I am like Jan, black vs white. The answer came to me when I took my emotions out of the equation, and I just looked at the facts. Got that from Sgt Joe Friday, just the facts please.

I had translab and it worked out for me. My Ben Franklin list might be different from yours, so I will not discuss my list. Just make the list and the answer will appear. Once I made my decision, all the pressure was off.

James

[leapyrtwins]

Hi Jan. Good to see you are back.

Thanks, James. 

Good to be back