ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: smallersucker on July 12, 2009, 09:41:38 am
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Hi I'm a newbie here as I was diagnosed less than a month ago with 4cm AN (mid-sized or large depending on who you talk to) :)
The search for the best treatment has proven a bit frustrating ??? as there are a number of sometimes mutually exclusive options. I strongly believe that most physicians are sincere when they advocate one form of treatment over another. It is just that these newer technologies are developing everyday and it is not easy even for these physicians to keep abreast of the latest developments. Plus, the newer developments still have to pass the test of time.
Patient accounts on the other hand, while undeniably sincere, tend to be written in different eras (therefore with newer technologies in different stages of development) AND MORE IMPORTANTLY, refer to different AN sizes. From what I have learned so far, it appears that size is a big issue in the treatment-choice decision. For instance, a patient who had a 2.5cm AN might speak passionately in favor of GK, perhaps without realizing that going straight into single session radio-surgery is not even an option for patients with larger ANs.
My question is, and any input would be very much appreciated, is FSR a good option for larger ANs such as a 4cm one? Jim, if you're listening, any regrets on having to go through de-bulking micro-surgery before your FSR? With what you know today, do you feel you could have gone straight to FSR? Thanks!
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Hi, newbie ;D
Welcome to the Forum!
I'm definitely not Jim - heck, I don't even know all the big words he does ;) but since there are so many posts on the forum lately, and also because I'd like to hear Jim's answer to this, I've taken the liberty of sending him this link in a PM. Hope you don't mind. I'm sure he'll be posting a response shortly.
I don't know a lot about radiation beyond the basics, but debulking large ANs and then radiating them is being done more and more each day.
Jan
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Welcome to our exclusive world, "bigsucker" ...... ::)
Sorry you have an AN and Jim is your authority on debulking/radiation, but I do want to add my welcome. You will find this group very caring and supportive as you walk through your personal journey with an AN ..... so keep posting and asking.
Clarice
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My impression is that no form of radiation treatment is recommended as the sole treatment for an AN over about 3 cm. FSR has been tried on ANs larger than that, when surgery is not possible, but the results are not encouraging. At that size, the total amount of radiation required is quite large, and the risk of swelling creating a serious problem with the brainstem is very real. "Big suckers," as you so eloquently put it, usually have large blood vessel involvement as well, and surgery is the only way to untangle them. Debulking with surgery, then radiating to polish them off if needed, is the way to go.
Welcome to the forum from me, too.
Steve
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Hi, Bigsucker ~
That's an attention-getting screen name. :)
To answer your question: no, I have absolutely no regrets about undergoing the de-bulking procedure prior to FSR. Of course, I had a very experienced, highly skilled neurosurgeon doing the debulking and he was keenly aware of the fact that I did not want to lose facial mobility (my hearing was long since gone in the affected ear). That's why he recommended de-bulking and radiation....to help spare the facial nerve. He was completely successful. I did not lose any facial mobility. My radiation oncologist was a whiz, too. Very sharp and a lot of experience with acoustic neuromas. My neurosurgeon's plan was to de-bulk the tumor to, in his words: "cut off it's blood supply and hollow it out" making it much more amenable to the effects of radiation. He cut it down from almost 5 cm to approximately 2.5 -2.8 cm (hard to tell, exactly) and as my signature notes, this has worked out quite well. The neurosurgeon and radiation oncologist worked as a team and claimed they had never seen a re-growth (in 5 years) using this approach. That sealed it for me. As others have stated, the de-bulking and radiation model is becoming fairly common for large ANs. It worked for me. However, as you seem to realize, any AN patient's experience (including mine) is from their unique perspective and thus, not necessarily objective. The reality remains that there are no guarantees and you have to go with your 'gut instinct' based on the research you do and the information you're able to accumulate. I trust this helps answer your question.
Jan ~ Thanks for the PM that alerted me to 'bigsucker's' post
Jim
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My impression is that no form of radiation treatment is recommended as the sole treatment for an AN over about 3 cm.
I'm with Steve on this one. I've never heard it recommended for an AN over 3 cm either.
Jan
Jim, you're welcome. Thanks for responding so quickly :)
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Bigsucker,
Sorry you had to use this as your signature, but you can always change it down the road!
Yep, surgery with debulking like Jim said sounds like the way to go.
Now comes the question- which approach, depending on the location (and the doctor and which approach they have the most experience with).
Let us know what your surgeon says. I would guess this sucker is coming out sooner than later??
Lots of good ears/advice here with many different experiences, so ask away :)
Maureen
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Thank you all for your prompt and warm responses!!
It is reassuring that the reponses share a common line of thought, which is also consistent with what I have come to believe.
Thanks!!
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Welcome to the forum! Others have given you great information.
Have you seen any doctors yet? What have they shared?
Kate
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So we'll take the golden AN,
and remove as much as we cAN,
then we shoot what's left with some rays from the doctor mAN...
Afterwards, I hope I can still drive the tAN vAN;
That's the plAN!
:D
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So we'll take the golden AN,
and remove as much as we cAN,
then we shoot what's left with some rays from the doctor mAN...
Afterwards, I hope I can still drive the tAN vAN;
That's the plAN!
:D
Love it! How clever and informative at the same time! Thanks.
Clarice
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Hey Bigsucker - glad to see you still have your sense of humor - definitely needed through this journey ;)
Sheryl
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9 days after surgery to debulk, I feel the operation went beautifully and I have no losses whatsoever.
But I do have a maddening case of the hiccups. Am at my wit's end. The aspired-for stoicism is crumbling. Can someone end this thing?
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Hi bigsucker .... although I don't see in previous posts how this evolved from "smallersucker". No matter.
Your humor .... very good ;D
Your maddening case of hiccups ..... not so :P
Try this .... have a friend or relative, or even a fellow poster, hide from you in a dark room, preferably in the same house as you are in (works better that way). When you walk into that room, have that person yell "boo" at the top of their lungs as close to you as possible. This might relieve your hiccups. Or it might not. Just to be on the safe side, you might want to consider all those disclaimers that accompany tv medical ads, as some might apply in this case.
Greg
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Radiation treatment is based on tumor volume rather than the longest dimension. For example, a 3.5x2.5x2.5cm tumor would obviously have a larger volume than a 3.5x1x1cm tumor, so any potential radiation plan would be much different. But both of these tumors might be referred to as a 3.5 cm tumor. I have seen in the medical literature radiation treatment for tumors longer than 3 cm. So I would encourage anyone considering Radiation therapy for their AN to consult with an expert in this field, rather than automatically assume that the largest dimension of their tumor would exclude this treatment option for them. The size of their tumor may or may not exclude radiation therapy. And the tumor's location also is important (intracanalicular vs. extracanalicular), or how close the tumor is to the brainstem. Find find out from an expert how the latest guidlines for radaition treatment would apply to your particular tumor and it's location.
Regards,
Rob
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Rob .....
Thanks for stating this. I have long known that size and location of an AN need to be determining factors in treatment selection. However, I had given little thought to the thickness/thinness of the tumor with regards to radiation.
Mine was apparently a relatively thin one but because of the speed of its growth, I was advised to go the surgical route. If I ever have to deal with regrowth, I will store this great piece of information.
Thanks. Clarice
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smallsucker aka bigsucker -
glad to hear the surgery went beautifully ;D and loved the AN humor (very nice rhyme).
Sorry I can't give you advice about the hiccups, but I'd give Grega's suggestion a try.
jAN
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Smallsucker,
Hey I like the sig! So glad to hear the surgery went well. Did you post anywhere else on post op? Any problems, questions?
Sounds like you are doing awesome for nine + days post op!
Maureen
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I have a reoccuring an, about 2cm give or take the question is surgery or the cyberknife? My previous an was removed 14 years ago when surgery was the only way to go and as a result I have total loss of hearing and facial paralysis. the thing is they said then that the tumor was the size of a dime and then after removal said it was the size of a quarter. Now they say 2cm and cyberknife, but are they sure of the size. The first time I had all the same tests MRI, Ct scan with dye. So I have my doubts. I have a 2nd neuo appt. tomorrow. Jean
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I have a reoccuring an, about 2cm give or take the question is surgery or the cyberknife? My previous an was removed 14 years ago when surgery was the only way to go and as a result I have total loss of hearing and facial paralysis. the thing is they said then that the tumor was the size of a dime and then after removal said it was the size of a quarter. Now they say 2cm and cyberknife, but are they sure of the size. The first time I had all the same tests MRI, Ct scan with dye. So I have my doubts. I have a 2nd neuo appt. tomorrow. Jean
Jean, the MRI's today are generally better quality than 14 years ago, so they should be more reliable. But we have had cases on the forum where the size at surgery was significantly larger than at diagnosis. How much time passed from MRI to surgery in your case?
When I had CK, they did another MRI the day before treatment. This is routine I think, since they use it to map the radiation treatment. If it was suddenly too large for CK, I am sure they would tell you and call off the treatment.
Good luck with your appointment.
Steve
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For my AN, depending on who does the measurement I have heard sizes ranging from 2.4 cm (according to the radiologist report), to a whopping 3.5 cm (from one of the doctors I consulted with). In a separate thread Tumbleweed posted a very nice explanation about how the measurements can vary, depending on if they are taken on an oblique angle, etc. Also, some doctors report the largest dimension (including the tiny portion in the IAC) and some only report the true diameter of the approximately spherical portion in the CPA. In my opinion this is the explanation for the big discrepancies reported on the MRI and after surgical removal: For example the radiologist may report only the diameter of the spherical portion, and upon removal the surgeon reports the largest dimension, which can easily be 0.5-1 cm longer.
After all this I am convinced that the most reliable way to be sure is to look at my own scans and compare my own measurements to the previous ones.
My understanding is that for radiation, the only dimension that matters is the diameter of the spherical portion, as this determines the total volume that must be radiated.
Marianna