ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: luckyone on March 16, 2012, 11:15:47 pm
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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.
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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.
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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.
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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
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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
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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 :)
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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. :)
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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
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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
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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.
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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
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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
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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?
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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.
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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 :D 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!).
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Well, I am going with GK on 4/3... I tried to get my insurance UnitedHealthcare to approve a second opinion out of my network (I have HMO) and they put me through so many loops, it's probably made my tumor grow another 25% in one day. So lesson learned, get another insurance other than UnitedHealthcare, and hope that GK helps me. I did reach out to Dr Chang from Stanford to get info on CK and he actually answered all my questions... I would love to do CK but due to the circumnstances and the fact that I am already stressing out about this to have to deal with insurance, I have no choice.
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I found out about mine the middle of January and had GK three days ago. (mine was 3.3 cm) I talked with someone who previously had GK and they described it as a nonevent. All I can say is that they were right. In at 6AM, fed me a nice breakfast at 11:30 AM and on my way back to the hotel by noon.
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Thank you WilliamS... did you consider CK at all?
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Hi,
My understanding is that one of the differences in choosing CK over GK is hearing preservation. If you've lost all or most of your hearing, than the one-time radiation treatment is definitely something to consider. But if you have your hearing, CK statistically will help you save it more than GK. Stanford helped me out with my insurance, they should be able to check on everything for you.
Your AN is small...please don't rush into this. I'd call Stanford again. Did you do the research in hearing preservation between the 2? That was very important to me.
Tisha
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I did consider CK. I chose GK because Dr. Lunsford at the University of Pittsburgh Medical Center was the only one that I found that had a track record of success with tumors that were between 3 and 4 cm. For what it is worth, I think the UPMC was a great choice. My wife and I traveled from Florida to Pittsburgh for the surgery and we both believe it was worth the trip. They have done in excess of 2,000 GK surgeries since the late 80s and they did 3 the morning that I was there. I would describe it as a very professional, very well run group. They clearly have a great deal of confidence in what they are doing and what they can accomplish.
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WilliamsS,
Did you send your records to Dr. Lunsford for an opinion? Because the local neurosurgeon is recommending radiation, he suggested I consult with Dr. Lunsford. I called their office and because all my MRI's and reports were done at UPMC, they told me he would look things over and send a letter with his recommendations. I'm still waiting and it's been a few weeks.
Lisa
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I did send my MRI and records to Dr. Lunsford. I received a letter from him in about two weeks. You might call his administrative assistant, Kelly Powell at 414 647 7744. You could also email her at powellkc@upmc.edu. I found her to be very responsive. The doctor has a very busy schedule and I know he was out of town at the beginnine of the month and will be again this next week. I found, however, that when we you are on his schedule, he gives you the time and attention you need.
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I felt NO pain during the actual GK treatment. They had me bring in my favorite CDs which played the entire time I was having the GK treatment. I had actually time the CDs so, I knew how long I was actually in the GK machine.
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Bill,
Thank you for the contact information. I still haven't heard anything.
Lisa
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Your welcome. However, I typed the area code wrong. It is 412 NOT 414.
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Because I live in Erie, PA, I knew the area code. I sent an email and Kelly called me within five minutes. I guess there was some confusion. In case anyone is curious, Kelly, Dr. Lunsford's assistant told me that they do not recommend Cyberknife. She said Gamma Knife is more accurate. I can't say either way. But again, as we all know, the doctors recommend the type of treatment that they do.
Lisa
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Got GK today by Dr. Duma at Hoag in Newport Beach, CA. The entire staff was amazing! Thanks to my brother for being there with me. I have to say that the head brace was a bit uncomfortable once you are on the GammaKnife table. For those considering GK, make sure when they position you on the table and they ask if you are comfortable, to have them adjust the table various times to find the sweet spot. I was in the GK unit for 42 mins, and I almost felt like giving up due to my head feeling like it was going to come off my body. Being the chicken sh*t that I am, I am worried about one thing the doctor said. I had my MRI three weeks ago, and compared to today's, he said it grew. Now, I know that it is supposed to grow, but it seems like it grew a lot in 3 weeks. Before this MRI, he had said the treatment would take 15 mins, but it ended up at 42 mins. Also, they kept saying before the MRI I'd have to come back in 3 months for a follow up MRI, but the doctor then came at the end and changed it to 2 months. So now my head is trying to make sense of this, thinking it's a lot worse than previously thought? It's become malignant? I don't know why I am being so paranoid, but I just don't like being "special" and that they are deviating from the norm. Anyone have any opinions? By the way, Dr Duma was incredible, I highly recommend him. Dr Chen also was great, both taking all the time in the world to answer all my questions even with others waiting to be treated.
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Lucky ~
Congratulations on completing the GK treatment.
I won't speculate on the reason for a longer GK session or the shorter follow-up time frame except to mention that the tumor's rapid growth may be a factor. This is a question for Dr. Duma. Although anything is possible, the chances of an acoustic neuroma being found malignant is infinitesimal and I wouldn't worry about that. Again, your doctor would be the source for credible answers to these questions.
Jim