FSR 32y old, concerned. Phila, PA

[tu]

hi everyone,
My name is Tu,I'm on this site everyday. my AN is 1.9 X 2.5 right ear. Current symptoms is tinnitus and 55% lost of hearing. Seeing doctors at Jefferson University, dr james evans and dr gregory artz. Dr James Evans recommend fsr and dr gregory artz(surgeon) recommend surgery, do to my age, which is 32. I have talked to dr schwartz at House he also recommend surgery, because of my age. Jefferson dr recommend that I get another mri in march 2011, to see the growth. Will be seeing drs at Upenn also, dr Sean Grady and dr Bigalow on 11/30. I'm am so scared of surgery, and with fsr my age seems to play a big role in my decision making. someone please help me...what should I do? Thank you all for reading.

[Anomar11]

Tu

I can't give you a hard and fast answer because it is such an individual decision and the decision making part is very hard for many of us.  I know I struggled with it too.  I do know that there are others who are younger that opted for radio.  There are many doctors who don't believe younger age is an issue.  Have you posted on the Cyberknife Patient Forum? 

Take care.

[Jim Scott]

Hi, TU ~

We understand your concern as you face the always-difficult decision of surgery or radiation.  Of course only you can make the final choice because only you will have to live with the consequences, good or not-so-good.  If you are truly petrified of undergoing AN removal surgery, then you really should consider irradiation.  I won't go into all the pro and con arguments but I will state that much of the resistance to using radiation on patients much under 55 or so is based on supposition, not clinical proofs.  I underwent FSR treatments (26) following AN debulking surgery and had no ill effects at all.  Within two years, the remaining tumor showed the beginnings of necrosis (cell death).  Today, I'm doing great.  However, I was 63 at the time of my FSR and so age was not a factor.  Still, both my neurosurgeon and radiation oncologist said they would highly recommend this two-step procedure for any AN patient presenting with a large tumor (mine was 4.5 cm). 

Again, this has to be your choice and no one one can take the responsibility of making it for you, whether they be a doctor or a person posting to you on the internet.  However, you can do your own research and schedule more doctor consultations if you feel they are necessary until you are confident with your ultimate decision.  I know this is all quite difficult and I hope we can help you but in the final analysis, it will be up to you.  We'll support whatever choices you make.  We always do.  I wish you success - whatever you decide.

Jim

[Tumbleweed]

Tu, I recommend you also consult with doctors specializing in GK and CK (GammaKnife and CyberKnife). Until you explore all your options, you will see only part of the picture and risk overlooking what may (or may not) be your best choice of treatment. This assumes that you are, mincing no words, comfortable with having a dead tumor in your head for the rest of your life. Some people just want the damn thing taken out. For them, surgery is the only option they are comfortable with.

Ask all of the doctors you've consulted with what are the chances (in percentage terms) of losing your hearing and facial-nerve function and suffering chronic headaches. You will probably hear that surgical resection presents, by far, the greatest risks in those respects, but maybe not. Keep in mind that the chance of recurrence is about the same (2%) for surgery, GK and CK, when performed by the best doctors and facilities, so that should not be a deciding factor.

Once you know, for example, which type of treatment presents the greatest chance of facial paralysis and/or deafness in the ear on the AN side, ask yourself whether that increased risk -- especially when you are so young and have a lifetime of potential disability ahead of you -- is worth taking or whether you should consider one of the other forms of treatment.

By evaluating the level of risk prognosticated by each doctor for your specific case, you'll make a decision on your treatment with your eyes wide open and more prepared to accept the consequences should those complications arise. Unless and until you make this type of informed decision, you will continue to be buffeted by the biases of each doctor you consult with (and every doctor, no matter which type of treatment they specialize in, has a bias). Some doctors will recommend one type of treatment even though it presents higher risk -- or even absolutely certain bad outcomes, such as single-sided deafness -- because they still believe it is the best treatment and the benefits outweigh the drawbacks. But it is far too easy for someone who doesn't have to live with those consequences to recommend that path for someone who does.

My point is that you probably don't want to make your doctors' preferences be your primary guideline for choosing your treatment. You want to instead evaluate what the likely outcome of each treatment means to you, to your quality of life going forward. You are the boss. You have to live with the consequences of your decision. No form of treatment is risk-free. Ask your doctors the difficult questions. Get hard numbers on the associated risks. Then ask yourself what risks you are most comfortable with assuming. The answer will then become clear to you. You will know which treatment is right for you. It will still be scary, but at least you will know in your heart that you have reduced as much as possible the risks you fear the most.

Be smart. Make an informed decision. Take control.

Best wishes,
TW

[suboo73]

Hello Tu,

Welcome to the Forum - and so sorry you had join this exclusive club...
BUT - we are here for you!

You have received some solid information already from other forum members, so please keep reading.
Then try to take a DEEP breath and take a break from it all.  Otherwise, you may find yourself on information 'overload.'

I am here with my sister, Bigsister.  She found out about her AN in mid-2008, and me, approx. 6 months later.
She sees Dr. Bigelow, so if you want to ask her about him, just send her a PM (go to upper left hand corner and proceed from there.)
We are both in W & W mode for the moment.  I hate that my hearing is going downhill - so i can relate to your concerns about that for sure.

I do see you have a lot to consider as you finish nursing school - my youngest daughter is studying nursing and i see how demanding it can be.
The decision to have treatment is part of the journey, and most say the hardest to get through...
Please give yourself some time to absorb the information - there is a lot to consider. 
Then, as TW suggests, be smart, make an informed decision and take control.

It can be challenging to gather all the information and make your decision about treatment, but you will eventually get there. 
Others will chime in about there experiences and how they continued on with there lives and careers despite this AN diagnosis.

Have you read about the Willing to Talk list?  You can talk to others in this situation and some find that very helpful.

I wish you all the best as you continue your quest for the answers you need.
Prayers all around to you and your family.
Feel free to send me a PM if you want.

Sincerely,
Sue

[jbbrown15]

I am 33 and just finished FSR at Jeff with Dr. Andrews.  He presented my tumor to Jeff's brain tumor board or panel and the members unanimously agreed to recommend FSR.  My tumor is 2.9 cms.  Can you ask Dr. Evans if your case was presented to the brain tumor board and, if not, whether it can be?  It's a multi-disciplinary group, so you get an unbiased opinion.

I also saw Dr. Grady at HUP.  He recommended Gamma Knife, so neither neurosurgeon recommended surgery for me.  I don't have any contra-indications for surgery, they just both thought that radiation was the better course of action.

Feel free to email me.  jbbrown15@gmail.com

Jean

[riri]

Same doctors, same situation, with a slight variation.  We are also about the same age.  
I think the rest of the board is right you need to weigh your options and get more opinions before you make your final decision.  Let the doctors work for you though because you are ultimately paying them so don't let them sway your decision one way or the other.  I am also seeing someone from UPenn, have a appointment at NY Presbyterian this week, and a friend of mine's who is familiar with a few doctors at Hopkins is putting me in touch with some doctors at Hopkins even though it probably will be for a consult. After that I plan to step away from the situation and weigh my options as to what is in my best interest and not what everyone thinks is in my best interest.  Feel free to PM me as well.

(personal email address removed)

[formula30]

I am 52 years old and I met with Dr. Evans at Jeff, and my case was evaluated by the tumor board.  My tumor was 1.8 x 1.9 x 1.6. Dr. Evans told me he would do surgery if I wanted or we could do radiation.  I know that for some surgery is the only option........they can't stand the thought of having the tumor still in their head........I weighed the pros and cons, facial paralysis, being my biggest concern, and I was was very nervous about brain surgery and the complications that could arise.  I was ready for fsr and met with Dr. Evans again, they had done an audiogram and realized that my hearing in the right ear was just borderline.........the reason I was going with fsr was to possibly help save more of my hearing............but in the end gamma knife is what I went with.  I had the procedure done on September 21, 2010.........I just had a MRI done, and will be meeting with Dr. Evans on January 12th.  For me radiation made more sense, since many times they can't get it all anyway and you need radiation also.  Gamma Knife has a very good control rate....I have done very well so far, met with the radiologist at six weeks, and she felt I was doing very well.  I have some balance issues, but they are controllable, I have not had to use steroids or any other medications, I work a full time job.  I was off from work only five days.........due to the fact I tend to get nauseous from medications.......if you have any questions about the procedure I will be glad to let you know about my experience in more detail.  I would pick gamma knife again......there was no pain........not even from the halo......good luck with your decision.  As everyone says it has to be your decision.