ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: ms444 on February 25, 2015, 05:37:43 am
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I was recently diagnosed with a 1.6 cm AN after progressive hearing loss and tinnitus. i am 37 yo. i have been struggling so much with what to do...have been looking at surgery and radiation, talked to tons of specialists in both camps (house, stanford, upmc, nyu, mayo among others)...
I feel like, in general, recommendations are slightly biased towards surgery due to my age....most say radiation would be 'reasonable alternative'... but i think docs are a bit lukewarm about it...
my gut has been leaning towards radiation, but am scared about failure and the need for potential surgery in the future, which would lead to a higher risk of facial nerve injury.
what has been others experiences in this age group?
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Hi ms444 and welcome to this forum .....
I was not under 40 at the time of my diagnosis of acoustic neuroma so I will not attempt to address your question on my experience.
When dealing with medical professionals, many doctors will encourage a treatment option most in line with what they are comfortable doing. That being said, only you should make a treatment decision, based on what experienced (in treating ANs) doctors have recommended to you.
There are many excellent physicians around the country who will review your MRI CD and give a recommendation. Is that what you meant by talking to specialists in both camps?
Many thoughts and prayers.
Clarice
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All any of us can say is what WE WOULD DO, not what you should do. I'm 47 and mine is a little smaller than yours. I'm going to wait mine out as long as I can. If it needs to be treated (likely), and I am under 60 (likely), I will get surgery. With radiation the way it is now, I am not too impressed with it. That is my lay opinion. My uneducated OPINION is that radiation is best for people who can't tolerate surgery due to age or other illness. Keep in mind that many highly educated Drs and researchers will tell you my opinion is wrong.
You have to weight the upside and downside of all types of treatment and decide which is best for you. The possible downside for radiation, while rare, is truly tragic. I am a worst case scenario guy and don't want to mess around with the possibility of it.
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Please enlighten us on the truly tragic downside of radio treatment???
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Please enlighten us on the truly tragic downside of radio treatment???
No.
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There is no "truly tragic downside" to radiation or any other treatments. I consulted with 4 docs - two of them actually do both radiation and open-skull surgery. They told me the "failure rate" of radiation and surgery is about the same. As for a "truly tragic downside", well, that can happen with any medical procedure. I know of someone who died during a tonsillectomy. No one could have predicted that.
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Death comes in different forms and that is as far as I an going to go other than to say it is irresponsible to to deny the rare, though horrific, possibilities involved here.
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We need to be very careful on this forum about stating our own experiences primarily. If we refer to other information, we need to include documentation of where it was resourced so others can read it, as well.
That being said, the radiation given during Cyberknife, Gamma Knife, or fractionated radiation treatments for treatments of acoustic neuromas is a very low dose of radiation and targeted specifically to the tumor. The risk is minimal.
..... back to the original post about patients under 40.
Thanks. Clarice
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We also need to be responsible and to not gloss over the fact that malignant brain tumors ARE a rare, but never-the-less, real risk with radiation treatment. We also need to be frank and realize that the death that comes from these is truly terrible.
It is irresponsible to put on rose colored glasses when describing how "perfect" radiation is especially with regards to patients who can expect to live another 40-50 years. There are many unknowns regarding truly long-term risks, and then there are the KNOWN RISKS that some don't want to acknowledge.
Asking me to provide "documentation" is just a way of brushing off the argument. There are tons of documentation and more is being generated as we speak. The Drs. who perform these treatments are going to be able to provide it much better than I can.
When I asked my Dr what the downside risk to radio treatment was, he said "Really bad things can happen". I pointed out that there is a very low risk I could die on the table in conventional surgery and he said "No, what I am talking about is REALLY BAD". That was all the "documentation" I needed at that time. I wasn't on the verge of getting treatment and that was all the info I needed at that time. He does both radio and conventional surgery, he knows what he's talking about, he's seen what can happen, he told me about it as he should.
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everyone is certainly entitled to their opinion, however repeating one provider's perspective is hardly equivalent to evaluating the data and making an informed decision. it is obvious that 'bad things can happen'. but to leave it at that is to simplify a very complex issue.
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everyone is certainly entitled to their opinion, however repeating one provider's perspective is hardly equivalent to evaluating the data and making an informed decision. it is obvious that 'bad things can happen'. but to leave it at that is to simplify a very complex issue.
It's not "one provider's opinion". It is common knowledge, and proven through research, that radiation treatment can, and sometimes does, lead to malignancies. I simplified the horror of dying from a brain malignancy because I didn't think it needed to be described in detail.
There are simply too many posts in this forum, not thread but forum, that act as though the worst thing that can happen from radiation is dry eye, tinnitus, etc that most of us are effected by anyway. That is not the whole truth. The whole truth is that there is the possibility of a malignancy caused by the radio treatment that is not sufficiently described as "terminal". To simply call it "terminal" is inaccurate.
How much should the risk of a malignancy factor into the decision? That is up to the individual getting the treatment. The older they are, the less of a factor it should be. Should it make or break their decision? The answer is different for a 30 yo than a 70 yo. At 47, I would not get radiation. If I make it to 60 and I need treatment, I may very well get radiation because I probably wouldn't live long enough to get a malignancy. By the time I turn 60, the radio treatments might be perfect in which case getting it would be a no-brainer.
I'm not telling anyone not to get radio treatment. I am simply telling, since there are some who seem to think I am making this up, that there is a VERY BAD thing that CAN happen and that the younger you are, the more you should consider it.
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"Common knowledge and proven through research " is simply not true and cannot be backed up by any data or statistics.
Back to the OP. Age could certainly be a factor in treatment. When you're young you have a much better ability to bounce back from injury than when you get older. Of course , what do we consider young? We all feel young right. :) Is 37 young? maybe. There are other more important factors when deciding treatment options. Size and location are probably most indicative as to treatment options. The experience level of the treatment team is also more important than age. I would consider these things first over anything else regardless of age. It looks like you have chosen to get opinions from very experienced doctors. Getting treatment from experience is key. Some people tell you that it will just click at some point and you will know it's the right thing to do. There's some mis-information out there. You're going to have to sort through it. I think you're on the right track and good luck.
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"Common knowledge and proven through research " is simply not true and cannot be backed up by any data or statistics.
One of the major, long-term side effects of radiation therapy is the development of a second cancer, frequently in the head and neck area. This often takes years to develop.
http://www.texasoncology.com/types-of-cancer/brain-cancer/radiation-therapy-for-brain-tumors/ (http://www.texasoncology.com/types-of-cancer/brain-cancer/radiation-therapy-for-brain-tumors/)
There's some mis-information out there. You're going to have to sort through it.
You are correct about that!
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"A second brain tumour
In very rare cases, you may develop another brain tumour many years after you were first treated. This is because, although radiation kills cancer cells, it is also a risk factor for developing them. Unfortunately, tumours caused by previous radiotherapy are often malignant and tend not to respond very well to treatment. It is very rare to get another tumour caused by radiation after radiotherapy for brain tumours but we've mentioned it here because it can happen."
http://www.cancerresearchuk.org/about-cancer/type/brain-tumour/treatment/radiotherapy/long-term-side-effects-of-brain-tumour-radiotherapy#second (http://www.cancerresearchuk.org/about-cancer/type/brain-tumour/treatment/radiotherapy/long-term-side-effects-of-brain-tumour-radiotherapy#second)
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You know, let's just step back for a minute....No one is saying that radiation therapy is perfect or even that it will necessarily end in disaster. I know whenever I have any type of medical procedure, particularly surgery, you sign a pound of paper acknowledging that there could be negative outcomes for one reason or another and releasing the provider from responsibility. This means YOU are responsible for deciding the risks you are willing to take. These things they mention may never happen. With radiation, the risk of possible future malignancy, or need for possible future surgery being more difficult is mentioned because it COULD happen. I believe age is a consideration for radiation; that is why many doctors encourage young, healthier people to have surgery. They are healthy enough to withstand the lengthy operation and deal with complications IF they occur, and in most cases, the tumor is removed. With radiation, the tumor is not removed, but its makup is changed so that it hopefully will not grow and could possibly shrink. All treatment options have one kind of risk or another, even W & W. My feeling is younger patients, should seek out the most qualified providers for both surgery and radiation...ask these questions right up front...take your time to weigh the answers, decide which risks you are willing to take and then proceed. AN Guy's choice was to W & W. For HIM, that was the right thing to do because HE decided the risks inherent in either surgery or radiation were not ones he was willing to take. The way it was explained to me, and from what I have read, while radiation is becoming more and more common, is improving by the day, and has shown remarkable results so far, not enough time has elapsed from its inception to let them see performance for more than 25 years or so. Does NOT mean it is not a valuable treatment, an effective treatment, or one that should not be considered for people of whatever age. (I chose to have it myself) People who are too sickly for surgery either because of age or illness...older people with small tumors, or people who just cannot stand the thought of brain surgery, would probably be the ones to whom this would be most attractive. Sometimes, a tumor is too large for radiation and is becoming a danger and the person is older. So many scenarios. See as many highly experienced AN doctors as you can, be candid about your fears and expectations, weigh what they say against your own gut feeling and do what YOU feel is right for YOU. Like Clarice said, not one of us asked for this diagnosis, but here we are. We cannot allow fear to paralyze us and prevent us from making a necessary decision, or we would never take our heads out from under the covers. It is a most difficult position to be in, but in most cases, we can move slowly enough to allow plenty of time to consider all options from all angles. For some, the choices are limited and in a way it makes is somewhat easier. All I can say is,there really is no RIGHT answer or one size fits all solution. Each of us is unique with what we bring into this condition...therefore our decisions will all have to be arrived at based on our own criteria for each individual situation. Wishing the best to all of us as we go through this journey.
NYL
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Hi MS444,
I was also 37 when I was diagnosed. My tumor was a similar size. All the doctors I saw told me my treatment was up to me: surgery, radiation or watch and wait. However some did tell me that surgery would be my best bet now due to my young age and if I had a recurrence later in life than radiation would be done. This was based on them also stating that gamma knife could only be done once. They also told me some stats on secondary malignancies due to the radiation (cant remember now - maybe I can find it in my notes). However after reading this forum not all doctors believe this. It seems if you talk to many doctors you will get many different sometimes conflicting opinions. Surgery went well for me but as NY Lady states no treatment is perfect so you really need to weigh all options and decided what you think will be best for you. As you can see from the replies to your post that there is still quite a bit of debate about the different treatment types. It is not an easy decision to make but thankfully most of these tumors grow slowly so you have time to think about what you feel comfortable with.
Best wishes,
not so New girl
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Hi MS444,
I am 36 and was feeling much the same way you were...what was the best treatment for me, and very curious of the outcome of others.
A few weeks back I went ahead and scheduled surgery through the military (hubby is in the AF). That's when I made my first post here. I was scared, doubting myself, and seeking help, and direction even though my message might not have come across that way. I also started contemplating radiation because I was afraid the surgeons here we're not the most skilled. Although they work on wounded warriors, and I am sure they're skilled in other types of brain surgeries, I was still feeling very unsettled. I called as many people as I could. My nurse friends, my grandmother who had radiation for cancer, etc. I was wanting the answer to pop up in front of me, and would cry telling my husband that I just wanted someone else to make this decision for me!
Through my phone calls we learned someone from my husband's hometown worked for Dr. Friedman @USC Keck Medical. She saw him years back for the same tumor. It was immediate relief after we connected. I sent my scans to him, and was able to have a phone consult the day he recieved them. It was a little strange how it aligned, but I've decided to have the surgery there, and I'm scheduled April 7th. We're in Texas, so we'll get to fly out, and hopefully have some beach time on some waters that aren't brown.
It is such a personal decision. I opted for surgery because of my symptoms. I have severe facial tingling, a nasty taste in mouth, and the tinnitus is making me crazy. I also have headaches often on my AN side. My fear with radiation was those symptoms would increase. It scared me too that through radiation the tumor might swell before it shrinks. With my symptoms, I just want it gone.
Everyone is so different, and there are so many different reasons people choose their treatment option. I'm not sure if I really answered your question, but I hope I helped somehow. I tend to ramble!
For me, Dr. Friedman recommended translab surgery. I will lose my hearing in my right ear. I am still scared, but know I'm in good hands, so that makes it a little better.
I'll post more as my surgery gets closer, and in the mean time feel free to message me. Oh yeah, my surgery is scheduled exactly one week before my 37th birthday! Yay! Happy birthday to me!
Good luck in making your decision. It's not an easy one, but your gut will lead you in the way that's best for you. You'll be in my thoughts and prayers!
Ashley
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Thank you ALL for your comments - it is helpful to hear others perspectives....
Ashley i can see how your symptoms affected your decision. I wish you the BEST in your upcoming surgery. i am kind of envious that you made a decision and are moving forward! i am hoping that i can just be brave and and make a decision one way or another...i'm tired of thinking about this pesky thing!
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ms444,
I was 42 when diagnosed and had a larger tumor - 2.8 cm.
I too had a lot of anxiety about traditional surgery and I spoke to several doctors on both sides of the issue - those that do traditional surgery and those that do radiosurgery.
My decision was made when I met with a GK surgeon in Baltimore, who advised me that if I were his brother he would tell me to do the traditional surgery. My age and otherwise good health factored into his advice.
He, a GK surgeon, was concerned about the long term affect of the radiation. This could have been because my tumor was on the upper end of what is considered viable for GK and because it was getting close to the brain stem. Therefore, presumably a larger does of radiation would have been necessary and the margin of error for the treatment area was smaller. He was clearly concerned that although the GK procedure is very precise, that radiation can affect things outside of the designed treatment area and he was worried about the long-term affects to me.
I went ahead with traditional surgery at House and have been doing very well ever since. Not perfect, but very well.
Good luck to you,
Ken
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I'm 36, and as of now, we are likely doing translab. I have family history of cancer on both sides (two grandparents died from cancer, my mom is recovering from endometrial cancer, and my aunt had ovarian cancer), so the added risk factor of radiation is probably not a good match for me. I like that translab has more long-term data, and that it has a good chance of preserving my facial nerve. The vertigo/balance issues are disabling for me, so I'm eager to get this thing out of my head and let my brain start coping with the damaged vestibular system.
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Here is a paper showing the risk of malignant transformation at 20 years....
It's 15.6 per 100000.
http://www.ncbi.nlm.nih.gov/pubmed/25434949
If we follow the scientifically accepted radiation risk model the odds double for the next 20 years and double again for the 20 years after that.... These numbers come from the lifetime studies of the Japan atomic bomb victims, radiation workers and environmental exposure.
If 15.6 per 100,000 is accurate for 20 years the risk at 50 years is 93.6 per 100,000
Or 0.09% I believe around 50% died from the malignancy..
So if your risk of dying from cancer was 33% your risk of dying from cancer 50 years after radiosurgery has increased to 33.047%.
How worried should we be about malignant transformation?
The risk of dying from Acoustic Neuroma Surgery is 0.5%. versus 0.047% for radiation in 50 years time. Over 6% of people undergoing surgery require long term rehabilitation.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3199160/
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Here is a paper showing the risk of malignant transformation at 20 years....
It's 15.6 per 100000.
http://www.ncbi.nlm.nih.gov/pubmed/25434949
If we follow the scientifically accepted radiation risk model the odds double for the next 20 years and double again for the 20 years after that.... These numbers come from the lifetime studies of the Japan atomic bomb victims, radiation workers and environmental exposure.
If 15.6 per 100,000 is accurate for 20 years the risk at 50 years is 93.6 per 100,000
Or 0.09% I believe around 50% died from the malignancy..
So if your risk of dying from cancer was 33% your risk of dying from cancer 50 years after radiosurgery has increased to 33.047%.
How worried should we be about malignant transformation?
The risk of dying from Acoustic Neuroma Surgery is 0.5%. versus 0.047% for radiation in 50 years time. Over 6% of people undergoing surgery require long term rehabilitation.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3199160/
Thank you for posting that. I don't follow the subtle statistical matters in the study because it's a bit over my head. But, the study and your post show that there is a risk of malignancy with conventional surgery and with WW as well. Which approach is more risky, and for who, and for how long, I can't figure out and one study probably isn't enough to say for sure anyway. But, the issue you and the study introduce into the conversation is that there is risk with all of this stuff.
As for the risk being small, the logical part of me says "Yes, my chances of that happening are so small I should worry more about a tree limb falling on me or a drunk driver crossing the centerline." But, I kind of stopped thinking that way when I found out I was the 1 in 100,000 winner in the AN lottery.
I would definitely like to learn more about this as I age and make my way towards the likely inevitability of needing some kind of treatment. I'm hoping my tumor will hold off until there is an ideal intersection of firm knowledge of the risks of radiation treatment, improvements in the radiation treatment, and me being old enough that I wouldn't ave to worry about any of this anyway.
One thing that did strike me about the case in the study was that it transformed into a malignancy only a few years after the treatment if I read it correctly.
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That particular patient had failed surgery, failed radiation, then failed radiation again, when it became malignant.
There is a link between unrelated malignancy and treatment failure.....
It's known that some people are more prone to malignancy than others. People with NF2 for instance have a much higher chance of malignant transformation.
It's still unknown whether the malignant transformations are largely occurring in people susceptible to this sort of thing or not. But the research is pointing that way.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3379795/
The odds for malignant transformation increase with the total amount of radiation received.. The odds of small tumours is less than big tumours. More accurate machines also deliver less radiation. The higher dosages associated with fractionated radiotherapy are also thought to cause a higher amount of malignant transformations. Typically 50 Gy for radiotherapy versus 12-13Gy for Radiosurgery
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Thank you for providing more information:thumbsup:
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Acoustic neuromas are actually not that rare... Occurrence is 1.4 per 100000 per year that is detected. From autopsy studies the occurrence is 2.1 per 100000 per year.. So many still go undetected.
2.1 per 100000 per year... With an 80 year lifespan... 168 per 100000 people over a life time... That's one in 600
In my circle of friends and acquaintances I know 6 people.. with an AN excluding people I have met through support groups.. 1 friend. 1 co worker. 3 direct relatives of friends. 1 x work customer.
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Acoustic neuromas are actually not that rare... Occurrence is 1.4 per 100000 per year that is detected. From autopsy studies the occurrence is 2.1 per 100000 per year.. So many still go undetected.
2.1 per 100000 per year... With an 80 year lifespan... 168 per 100000 people over a life time... That's one in 600
In my circle of friends and acquaintances I know 6 people.. with an AN excluding people I have met through support groups.. 1 friend. 1 co worker. 3 direct relatives of friends. 1 x work customer.
That, and the fact that there are so many rare things to get, that we are bound to get something sooner or later. In our case, it just happens to be AN. If I didn't get an AN, I would have gotten something else and thought that that was a longshot. Hopefully we won't hit this type of lottery too often as getting an AN doesn't mean we can't get some other rare thing.
It kind of reminds me of the scene in "Garp" where Robin Williams wants to buy a house after a plane crashed into it. It's "pre-disastered" he exclaimed.
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I was 40 when diagnosed with 3 cm AN -- most of the docs (except the radiation oncologist) thought that my tumor was too large for radiation to be safely administered. The radiation oncologist, however, thought that I would be a candidate for radiation but also told me that radiation 1) would not shrink my tumor (and therefore not alleviate my symptoms); 2) would make surgery more difficult in the future if it was ever needed; and 3) outcome data for the radiation doses he was suggesting have only been tracked for 10 years. Based on that information, I decided radiation was not for me. I was otherwise in great health and my risk for surgery complications was low. I had translab surgery in Feb and fortunately have had a very good recovery except that I have facial paralysis (and of course SSD). I feel I made the right treatment decision for me but I had a lot of uncertainty right up until the day before my surgery. Only you and your medical team can determine what is best for you -- it is a hard process, so hang in there!
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Hi ms444,
I was 27 when I was diagnosed with my tumor, and had it removed! I am now (almost) 2 years post-op. Because of my young age, every specialist I saw recommended surgery, but then it's a matter of which approach you are comfortable with, and what doctors have the most experience.
Have you sent your MRI to House in LA? They do free phone consultations, https://www.houseclinic.com/consultation/acousticneuroma
It is where I had my tumor removed with Dr. Schwartz and Dr. Friedman (who has since moved to USC). They were beyond amazing! They removed my entire tumor (small in size - 1 cm), saved my hearing, and I had no facial or balance issues whatsoever!
My advice is see as many specialists as you can, and do as much research as you can until you come to a decision that feels right for you. The good thing about this tumor is that is grows slowly, so you have time to research your options. Let me know if you have other questions, I am happy to share my story!
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I am 40, I did alot of research as well, my outcome was great because of my team,rehabilitation, and attitude! !!! (So important ).. I had a 3.5 cm..tumor removed a 13 hour surgery and everything went exactly what I was told.. I believed in everyone and most importantly I believed in myself! !! I have no headaches at all and my energy is sky rocketed!! (My one doctor did tell me that I won't realize how yucky iv been feeling till its out)..&he was so right!!! I can't speak for anyone else but it wasn't bad, and of I had it to do it again I would...I was back to normal life in 8 weeks..driving after 4 weeks. .so do your research, go in with the right questions and go with your gut instinct. ..knowledge is power..one thing I have learned is you are your own advocate! !
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I was 25 years old at diagnosis and 27 years old when I had surgery. I am probably one of the youngest on here at diagnosis...and it was right after I had just had my thyroid removed due to thyroid cancer. I've been through a lot at a young age. I hope I'm good for at least another 50 years!! Lol. I had the AN removed via middle fossa a year ago and now doing very well. Just found out my last MRI was clean! I think this method was best for my age since I'm younger and ability to recover faster. If you have questions about my experience, let me know!
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Hi everyone....
just thought i would see if any other folks wanted to share their stories? i see that there have been a lot of views to this thread, so i am guessing that there are lots of patients under 40 that are out there...i am still unsure about what treatment route i'm going to do....i had my most recent MRI a couple of weeks ago that demonstrates that my AN is essentially stable (between 1.7-1.8 ish). it has been almost a year since my diagnosis.
i'd like to get it done this calendar year since i've already paid my deductible, etc.....and am still leaning towards radiation....
i would love to hear more stories from other patients in this age range - thank you!
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everyone is certainly entitled to their opinion, however repeating one provider's perspective is hardly equivalent to evaluating the data and making an informed decision. it is obvious that 'bad things can happen'. but to leave it at that is to simplify a very complex issue.
It's not "one provider's opinion". It is common knowledge, and proven through research, that radiation treatment can, and sometimes does, lead to malignancies. I simplified the horror of dying from a brain malignancy because I didn't think it needed to be described in detail.
There are simply too many posts in this forum, not thread but forum, that act as though the worst thing that can happen from radiation is dry eye, tinnitus, etc that most of us are effected by anyway. That is not the whole truth. The whole truth is that there is the possibility of a malignancy caused by the radio treatment that is not sufficiently described as "terminal". To simply call it "terminal" is inaccurate.
How much should the risk of a malignancy factor into the decision? That is up to the individual getting the treatment. The older they are, the less of a factor it should be. Should it make or break their decision? The answer is different for a 30 yo than a 70 yo. At 47, I would not get radiation. If I make it to 60 and I need treatment, I may very well get radiation because I probably wouldn't live long enough to get a malignancy. By the time I turn 60, the radio treatments might be perfect in which case getting it would be a no-brainer.
I'm not telling anyone not to get radio treatment. I am simply telling, since there are some who seem to think I am making this up, that there is a VERY BAD thing that CAN happen and that the younger you are, the more you should consider it.
ANGuy,
You're scaring me, but I like to be informed. Thanks for sharing.
A member of my local Acoustic Neuroma support group who has had CK says his surgeon claims there is roughly a 1 in 500 chance of dying on the operating table compared to a 1 in 20,000 chance of getting cancer from radiation treatment.
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Reading your story makes me glad my AN was monster size when it was discovered when I was 50. My only choice was surgery...a literal no brainer...pardon the pun (not really). This is one of those times when you need to follow the best medical advice available to you. It’s a deeply personal decision you should make with family.
Take Care ;)
Doc
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I was 44 when I had 26 treatments of radiation. I'm just fine now. (2 years later)
Yes, I was against radiation for the first 3 months after my diagnosis,
but after research and research, I became more confident with radiation. I was very
concerned about my age.
Then I met with my doctor who has a PhD in radiation, and he really calmed
me down. I also listened to the symposium speakers from 2013. Their presentations
are on this website. I watched a lot of you tube videos and talked to anyone and everyone who
was willing to listen to me and also tell me their outcomes.
Sandy
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I was 38 when I was diagnosed (March 2014) and almost all the doctors I met with recommended surgery other than Dr. Kondziolka who said I could do gamma knife- but that is all he does now and is very good at it. My tumor was 3cm and I felt too big for radiation plus I was young and in great health so I opted for surgery. I was also terrified of what might happen with radiation down the line. Yours is smaller. I would send my scans to Dr. Schwartz at HOUSE to get a really objective and good opinion on the risks and benefits of both treatments- he does both. I didn't use him but I wish I did. My surgery wasn't that successful. My surgeon, who is also worl renown, left half my tumor behind and now I'm looking at having to do gamma knife in the same year as my surgery. I was trying to avoid radiation and now I have to do both. send your scans to the best doctors with the most experience and see what they think and how you feel. Dr. Chang at Stanford -cyber knife. Dr. Schwartz -House. Dr. Golfinos -NYU he does both. Dr. Kondziolka NYU- gamma knife
Good luck-m
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ms444,
I was 37, male, when I found out I had an AN. I'm now 38.
My AN was a monster (6.3cm x 3.2cm x 4.4cm) with a few cyst surrounding the tumor, I chose a plan of both surgery and radiation in Chicago.
I had the "debulking" RS surgery May 2015. Gamma Knife, Radiation followed in October 2015.
Having done both, I can honestly say I'm not a fan of GK but so far I have kept my 90% of my hearing and my balance is back to mostly normal. Recovery from radiation was rough for me, not saying surgery was easy at all (quite the opposite) but radiation recovery was hard, albeit faster than surgery. Perhaps the GK recovery was harder because I thought it would be "easy" so my expectations were wrong.
I feel very good about the path I took because I made the choice, nobody else.
Regardless of which path you take, once you decide you should feel confident you have chosen what is best for you, that will make all the difference in your recovery.
Good luck in your decision and feel free to reach out to me if you wish to chat!
Stay positive & best regards,
Jet