radiation vs surgery & doctors in Rockies

[crazyd925]

I read somewhere that when radiation is chosen instead of surgery, there's a better chance for the tumors to become cancerous. Does anybody have any knowledge or input on this issue?

I'm on my second go 'round with ANs. Had a 3.81cm removed 10 years ago and now have 2 regrowths in same ear. Appt. with ENT is Friday and I'm trying to gather all the info I can so I hopefully get all my questions answered at once. I think my biggest fear is more (or worse) damage to the facial nerve since I've already lost my acoustic and vestibular nerves on that side.

I live in the Rocky Mountain region now and am not at all familiar as to where they will send me for whatever they recommend. Has anyone in this forum had AN surgery in this region?

[Rich56]

Hi crazyd925,

I’m very sorry that you have to go through this all over again, like the first time wasn’t enough.

My wife Scarlett was diagnosed with a 2.5cm cystic AN on 11/12/08 and had her surgery four weeks ago today, and is doing very well considering what an ANer goes through. 

With regard to radiation treatment, we looked into multi-session fractionated stereotactic radiotherapy (FSR).  The radiologist’s recommendation to Scarlett was that she have the surgery, for the following reasons:  First, Scarlett already had multiple symptoms, and that the purpose of the treatment is to kill the tumor, it would likely not reduce in size, so the symptoms would remain.  Second, the tumor had a cyst in the center of it, and the fluid could still increase which would add to the pressure and cause increased symptoms, which could lead to surgery anyway.  Third, if she needed the surgery after the radiation treatment there would now be scar tissue, which would make the removal of the tumor off of the nerves more difficult.  And fourth, there was a chance that the radiation itself, could cause new tumors down the road, and that they only have records going out about 10 years after treatment, with about 2% resulting in new tumors from the radiation.  The radiologist said given that Scarlett was relatively young (just turned 50) that she did not recommend the radiation, but rather surgery.  They never said anything about cancer.

I hope this helps in some way.  You’ll be in our thoughts,

Rich & Scarlett

[Jim Scott]

crazyd925 ~

I'm sorry to learn of the AN re-growth you're experiencing.  As Rich stated in his post, once is enough - but I guess we don't get to decide that.

I underwent (retrosigmoid) surgery followed by 26 FSR 'treatments' for my AN.  Both were successful with no complications.  That was almost 3 years ago.  I'm not a doctor, much less, an expert on radiation statistics, but I'm confident that the risk of radiation prompting the AN to become cancerous is practically infinitesimal.  I certainly had no qualms about receiving the FSR.  However, this is a personal decision that only you can make.  I don't live anywhere near you (I'm in Connecticut) and so, cannot offer any information on doctors and hospitals there, but I'm sure other posters can - and will.   

Jim

[sher]

crazyd925,

I had Cyberknife 7 months ago. I was told the chances of cancer are so minutte that I need not worry. I have not regretted
my choice at all. I am recovering splendidly. No facial weakness, some hearing loss, and vertigo and  balance are getting better. I know there is a Cyberknife clinic in Boulder. You also can go to http://www.cyberknife.com/Forum.aspx and ask any questions that you have and there are Dr's there that will answer them. Good luck in your decision making.
Hang in!
Sherry

[sgerrard]

Nancy Drew did Gammaknife in Colorado. I think the Boulder CK that Sher mentioned is considered to be one of the good ones.

Cancer is not a worry. Things like swelling and residual balance issues are more relevant. Somebody here had radiation for two small ANs in the same ear recently; can't think who at the moment.

Hi Sher, glad to hear the word splendidly.

Steve

[wwalker]

Diane,

I had my AN surgery in Albuqerque three years ago.  Dr. Karl Horn is the ear specialist here, if you can't find someone experienced in Colorado.

Wayne

[Sue]

Yeah Diane, the doctors should tell you ALL the risks with each treatment.  And the risk of being in a fatal car accident on the way to your treatment is much higher than getting cancer from the radiation treatment.  You have to consider all the factors and then judge which one is the most suitable for your situation.  Did the doctor talk about the risks of anesthesia with surgery?   I've found that that doesn't even come up until you are practically ready to go into surgery and then the anesthesiologist comes in and scares you half to death. 


Anyway, I know you will find somebody in your area who will take good care of you, and I hope your treatment and eventual recovery go well.

Kindest regards,

Sue in Vancouver, USA