Got diagnosed today, really scared.

[luckyone]

I got diagnosed today with AN, 0.8cmx1.59cm.  My doctor is Dr Duma, and he immediately started pushing the Gamma Knife (GK).  He seems like a very nice, caring guy but wanted to schedule the surgery for 10 days from now.  I was wondering if anyone in the forum can comment on GK.  I worry that the radiation will turn the benign cells into malignant in the future.  Thank you in advanced, I appreciate it.

[Susan A]

I am sure you will get replies from people with far more experience than me - but my immediate reaction is that your AN is small and, given that they are typically slow-growing, there is no rush to do something about it in just 10 days! I have certainly heard that there are advantages to dealing with an AN while it is small, but IMO you have time to seek a second (or third) opinion.

[luckyone]

Thank you Susan... I appreciate your comments.  I was really scared of going through a surgery, and was so happy to hear that options like Gamma Knife exist.  But overnight, I have been reading that radiation could turn healthy cells malignant.  Does anyone have a site showing statistics of post treatment cases?  I found this one http://emedicine.medscape.com/article/857604-overview#aw2aab6b3 but would like to see if others exist.

[TJ]

Lucky One

I agree with what Susan has said.  Your AN is still small, and you have time to look at all your options, which would include "wait and watch".  You don't know how long the AN has been there nor do you know if it is growing.  Do your research and make the decision that is best for you.  It is a process that we all had to go through.

TJ

[trev0024]

The fact that you feel your Dr. is "pushing" any treatment and rushing you seems like a problem. Just for reference, It took me 3 months to come to a treatment approach and scheduled my surgery for Tuesday next week. It helped to get 2nd, 3rd and 4th opinions. Even though I got mostly the same medical advice and information, it helped me come to a decision that I felt comfortable with. This is a process. Just my two cents.

Jeremy

[Bonnie B.]

I just had gamma knife surgery on Thursday at Yale New Haven Hospital.  It wasn't nearly as bad as what my mind was thinking prior to the procedure. 

If you have any questions, feel free to ask me.

Bonnie

[Manders]

I would certainly second everyone else's comments and say that there's no rush! I know it's extremely scary when you're first diagnosed and it can be overwhelming, but you do have time. Although it is a brain tumor, it is benign and slow-growing and you certainly have more than 10 days to evaluate your options without fear of negative side effects.
My doctor never rushed me into making a decision. She simply explained all of my options and left the decision completely up to me. I decided to go with surgery and not radiation because it seems that the long term effects of radiation are still unclear. I'm only 24 and I didn't want to risk having complications 5, 10, or 15 years down the road. That, and I just want to be rid of this tumor once and for all. But that was just my personal decision and shouldn't deter you from pursuing radiation as an operation as I've heard it can have great, successful outcomes.
My advice is to research, research, research and ask lots of questions! And this forum is an excellent place to start. 

[Jim Scott]

Lucky ~

I'm not a doctor but I can tell you with certainty that your AN is small (mine was 4.5 cm).  That being the case, as others have noted, you should be able to observe the AN to see if it is growing or stable.  Another MRI scan in three to six months should suffice. 

You should never forget that you are in charge at this point.  Dr. Duma, who has an excellent resume, can offer his medical advice but ultimately, you call the shots, as it were.  Do not be frightened into doing anything rash or unnecessary.   

As for the efficacy of Gamma Knife radiosurgery, it has been in use since 1988 and thousands of AN patients have benefited from this procedure.  Because I'm not one of them (I had FSR) I'll leave to those with first-hand GK experience to comment on the experience.  However, I believe that it is accurate to state that the chances of an irradiated acoustic neuroma metastasizing is infinitesimal and not something you should be concerned about.  However, many doctors steer younger (under 65) AN  patients away from radiation procedures (GK, CK, FSR) due to concerns about the patient accumulating too much radiation for their body to safely absorb.  That idea is losing credibility but old ways die hard and many doctors still hold that view.  Apparently Dr, Duma isn't one of those - or you're 'old enough' that he isn't overly concerned about your radiation intake.  In any case, please think about this and do not rush into any procedure.  We've had members - frightened by their doctor's grave concerns -  that did just that and regretted it, later.  Radiation treatments may be 'non-invasive' (no cutting) but they are not a panacea.  As with surgery, GK carries it's own risks.  I'm sure GK patients will soon add to this thread with more information based on their experience.  I suggest that you consider their words.

Jim   

[pjb]

Sorry that you have an AN but lucky it is small and a slow growing non cancerous one at least..But through my own experience you have time I would definitely research as much as you can sometimes too much information can be overwhelming but this is your head and please make sure the surgeons are very very experienced. I am sure you will come to the right decision for you and not the doctors..

Best Wishes,

Pat

[luckyone]

Thank you everyone for the support.  It provides me with a good deal of hope.  I am not one for surgery, so I am probably going to take the chicken route with GK or CK.  Now I am reading on one shot, versus fractional over a period of time.  I guess my concern with radiation is long term effects.  I wonder if there are any folks in this site with 10, 15, 20 years of having had a radio therapy just to make me feel better that radiation risks are low in the long term?  Again, thank you everyone for your kind words.

[jaylogs]

Hello there and welcome to our little club!! I am sorry you had to find this place like this, but you'll be glad that you did! You'll find that as you go through this journey there will be a lot of questions you'll have. In fact, I hated the whole trying to decide what do part of this thing.  But once you do make a decision and it feels right then you made the right decision.  If you haven't already done so, I would urge you to visit the ANA main web page (www.anausa.org) and from there click on the "New Acoustic Neuroma Patients Click Here" button. That will take you a place where you can request free AN literature chocked full of good stuff that will help you in your quest.  And then of course there's this forum.  As you gain education you'll be able to refine your searches and be able to see other's people's experiences and how they dealt with it.  We are not doctors here, but we have been in your shoes.  So take a deep breath and just check things out here...let us know if you have any questions. We're here to help! Good luck and take care!
Jay

[JAndrews]

Your tumor sounds small enough that you have time to make a decision. I spent 3 months researching and coming to a decision and my tumor was much larger than yours. Good luck to you..don't let any doctor rush you into anything

[luckyone]

Thanks JAndrews... I am definitely going to get other opinions.  Even though GK makes sense instead of surgery for me, I do want to learn about CK.  It seems like CK's process of short duration, but overall more radiation is a logical path.  But it's not as precise as GK.  In the end, the trick is to stop the growth and not have any cells turn malignant!  Keep reading is a myth, but if it can change a tumor's DNA, why can't it change healthy cell DNA as well?

[Bonnie B.]

I had GK last Thursday.  I did a ton of research on all forms of treatment for AN.  As far as I could see, the long risk of having healthy cells turn malignant is low and the odds are in our favor that it won't happen.

I could not even comprehend actual brain surgery with all of the side effects.   GK gets the process over with in one treatment.

Good luck and let me know what you decide.

[luckyone]

Thanks Bonnie, I hope you are feeling well post GK.  With GK, do you actually feel any pain or discomfort while the radiation treatment is happening?  Whether it's from the actual radiation frying your brain or from the contrast MRI?  Thank you tons in advanced!  I am deciding really soon on GK or CK, I want it over with as I do know for sure surgery is not my thing (unless I absolutely have to!).