ANA Discussion Forum
Archive => Archives => Topic started by: dowdog on April 24, 2006, 03:46:54 pm
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I am newly diagnosed with AN (last Friday). Have read some posts about these two types of radiological treatments but don't know the diff.
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Hi Dowdog and welcome. You certainly have come to a terrific place with a wealth of information.
I believe if you go to the "Radio-Surgery Options" forum, you will see info there about the 2 forms of radiation that you mention but I'll see if I can help here and see if others chime in with their info as well.
Gamma Knife and Cyberknife:
GK - 1 dose/day treatment
CK - fractionated (usually 3-5 doses/days)
GK - metal head frame
CK - frameless (use of a mesh/mask)
radiation used = just about equal (anyone want to chime in on this as I'm really lousy at true technical data)
GK - Image guided
CK - image and robotic guided
Post treatment symptoms/after affects - run about the same. Obviously, varies from person to person but "typical" side affects are enhanced tinnitus, dizziness, balance issues, facial numbness, etc.
Hearing preservation (I believe) run about the same for both forms of treatment.
Like I said, just brief thoughts to help but I know there are many posts in the Radio Options forum and many here that have had both forms of treatment that are more than happy to share.
Know, regardless of what you decide or where and how, we are ALL here for you! :) Welcome to our small little corner of the world, but hey, the drinks are good and so is the support! Great folks here!
Phyllis
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dowdog, found this link for you in the Radio Options forums.. some posted that had GK and some that had CK.. hope it helps.
Phyl
http://anausa.org/forum/index.php?topic=1172.0
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Dear Dowdog:
  The objective of both GK and CK is tumor cell destruction without having to crack open the skull and invade the cranial space. This is accomplished by using convergent beams of ionizing radiation to cause extensive damage to the cells at the location where the beams cross. A large percentage of the beams pass right on through the skull and exit the other side (the basis of chest and tooth x-ray tomography). Depending upon the size and location of the tumor, the preference of the physician, and the work schedule of the patient, a single dose of high intensity radiation (my treatment option) or successive doses of lower intensity radiation may be prescribed. From a patient's standpoint, it really doesn't matter if the physician uses a neutron beam, proton beam, gamma ray, or x-ray beam. These differ in terms of the energy per unit dose but not in terms of the ultimate outcome (vaporizing the tumor!). What matters is how well these beams can be focused onto the tumor so that the cells that comprise the tumor get blasted and no others cells in the area do. If this is confusing, I suggest the following demonstration to put your mind at ease. Have everyone in your family take flashlights (or laser pointers) in hand and direct their beams all at the same spot. Hopefully, the spot where all beams converge gets many times brighter than expected. Now remember when we were kids, fascinated with lenses. Did you ever hold a magnifying glass at just the right distance above a leaf that the sunlight passing through the glass started the leaf on fire? If so, then you know exactly what the physician is trying to accomplish with GK or CK.
-Labott
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good analogy labbot...
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Thanks for all of the good input. I just got back from Dr. Wiet's office in Chicago. This is my first visit to a specialist since my Diagnosis a week ago. Wiet is a Neurotologist. (He is a surgeon but says that in every surgery there is a team of Doctors).
I said that I would prefer the watch and wait approach and if there needs to be any medical intervention, I would choose radiology first. He said he can work with me no matter what choice I make.
The Radiologists report of my MRI says that the mass measures"approx. 10 x 6 mm transverse x AP x 6 mm in craniocaudal dimension. It extends to the level of the porus acousticus and bulges minimally into the cerebellopontine angle cistern."
Dr. Wiet says that I should have a CT Scan to see how dialated the bone is.
He says I should have a ENG test to see about my balance. I failed the Romberg test in his office.
He says I should have an ABR to tell if the tumor is squeezing the hearing nerve.
Has anyone else had all these tests? Are these standard in determining the best approach for treatment of AN?
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Dowdog IMO it sounds right to me. I did a balance test and audiogram in the beginning of my symptoms presenting and it still took them a year to diagnosis me and when they did my tumor was considered large. I was told they should have done an ABR in the beginning which I don' tknow if they did or didn't. :(
So my opinion yes they are standard tests in determining the best approach of treatment.
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Dowdog:
  The tests were given to me prior to MRI imaging. They are painless, easy to get through, and provide useful info for the physician. After the balance test, you will really understand the meaning of the old comic line "Blow in my ear and I'll follow you anywhere". :)
 -Labott
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Never heard that line before LOL
Personally, I thought the heel toe walk was a riot. I'm thinking the neuro's have hidden cameras in the corners videotaping for a montage on america's funniest home video. Mine was sad...didn't even realize I couldn't do it at that time :(
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Labott and Batty,
Thanks for the feedback. The heel-toe test was what my doc called the "Romberg" test. My wife was with me in the office and she was blown away by how pitiful I looked trying to keep my balance!
Another thing my Doc said was that 1 in 10,000 people who choose radiation treatment for AN have their AN become cancerous. I was not aware of this. In fact, I thought I read somewhere on the AN website that this was a myth. I didn't tell my Doc that.
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Hi Dowdog.
Please know that AN radio-treatment potential "cancer" is not accurate. As with CK, the radiation is not "disposable" like radio-therapies that cancer patients experience. Chances are slim to none that cancer would develope.
You can read more about it here in the "Brain" section of CK support website. I'm sorry I don't have the time to find the exact thread there, but know that you will see it there.
http://www.cyberknifesupport.org/forum/
Phyl
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Another thing my Doc said was that 1 in 10,000 people who choose radiation treatment for AN have their AN become cancerous. I was not aware of this. In fact, I thought I read somewhere on the AN website that this was a myth. I didn't tell my Doc that.
If you think about it, 1 in 10,000 is the number they quote for legal purposes, even if it was accurate, it's not bad odds. Chances of not waking up from anesthesia are .5 to 1 in 100....
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About that cancer statistic.... aren't there lifetime non-smokers who get lung cancer? I haven't read anything on such stats and have done alot of research for my AN situation; I would be wary if your doctor is using "scare tactics".
Just my $.02,
Good luck,
Cheers,
Suzan
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Dear Dowdog:
   Your statistic about 1 in 10,000 captured my imagination. I was told only 1 out of 1,000 people get diagnosed with an AN. So by my calculation, one person out of 10 million folks is gonna get cancer from radiation. The current rate for cancer in any form in the US population is a heck of alot higher than 1 in 10,000. This statement probably means that you doctor is trying to convince you that it's safe. Another way to view the 1 in 10,000 number is to convert it to a percentage. You have a 0.01% chance of getting cancer from the treatment or a 99.99% chance you won't. Your best bet is to get a consult with a radiation specialist for AN. They will have the up-to-date figures.   -Labott
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Hi I've just recently been diagnosed with a 1.9 x 2.1cm cerebellar pontine angle mass (AN) to the rest of us! My ENT specialist was quick to diagnose the AN and refer me to the University Network in Toronto. I set about finding out as much as could about AN's and found this great site. So as prepared as I could be I recently met with a specialist at Toronto General, where the diagnosis was again confirmed, my options of treatment presented - very thoroughly but definetely weighted towards the Surgical Options (his specialty). I've just received my follow up letter, I requested referrals for a second surgical opinion and a radiosurgery consultation, but one of the most disturbing things was the information included in his letter regarding complications from radiosurgery.
He quoted a 5% chance of significant facial pain that may require long-term medication with anti-convulsants, a 5% change of experiencing significant headaches that may warrant the placement of a CSF shunt and 5% chance of facial weakness. Finally "there is the very remote yet real chance that 30-40 years later you might develop a radiation included malignancy", this last sentence frightened me and really made me question my leaning toward Radiation.
For my own reading and the reading I've done on this site, the complications from the Radiotherpy do not seem anywhere near this severe. Any thoughts on this would really be welcomed,
Dazed and confused in Canada :-\
I have not seen
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Hi Jackie,
Sorry you had to join the club of Aners. But it sounds like you are doing the "check it all out" thing re your choice of treatment and it is good that you do have a choice.
Whoever your Ent is at the hospital, he/she quoted you some good statistics for my thinking. If you reverse that percentage, you were told a 95% success rate for the issues mentioned. That sounds pretty good to me. I don't know your age so the 30-40 years down the line thing isn't something i can comment on, except to say that like you yourself said, the scare of cancer according to my own searches is practically zilch and is very much like results from thsoe who had surgery also....
Note that in your own quote, you said you were told "there is a very remote" chance and from my own reading it is remote.
Have you joined the ANAC board in Canada? and have you looked at the cyberknife board too? i found them helpful as well as this one along with all my other research.
I myself am in the post treatment stage lol after fsr. I chose it because it felt right for me.
There are great doctors in TO, in all treatment areas. :) Good luck in your decision making.
Windsong
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The Radiation-to-cancer type information is often misleading for at least 3 reasons :
One - it tends to be spouted by conventional surgeons, who in most cases wouldnt know how
to switch the machine on.(there is a big divide here in the medical community)
Two - it takes no account of the falling doseage used - if you look over the 10-20 yrs time frame
the total doseage has halved for any given treatment - so any long term study is based on rather
greater exposures which are not used today
Three -systems like the gamma knife use a process where the entry and exit concentrations
are very low - its only on the AN where the beams are focused (by three dimensions, by computer) that the beams are powerful enough
Sometimes you meet a new life form - a surgeon who also does radiotherapy
I tend to think you getter a better" balanced" view from someone who is sitting
on the fence.
And finally of course, its your choice to make which is best for you
best regards
tony
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Hi
Many thanks for your reply, it helped settle the nerves/panic - especially when you hear the "C" word!
I got my second consult with the microsurgeon tomorrow so feel a bit tense, keep having to remind myself to move my shoulders down from my ears and breath ;D. This is a rollercoaster ride, some days I feel things could be a lot worse and I need to just get on with it and other days its hard to focus on anything else. I even had AN dreams!! Most people who know me would say there's always been something wrong with my head :)
Thanks again
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I dont doubt your emotions or feelings for a moment - perhaps all of us, feel/have felt that way about it at one stage or another. To you, and all others out there that are pre- treatment
I would say again - this is first and foremost, a Mental battle.
The state of mind is important now.
Its most important to focus your mind - the mantra should be "I WILL get better"
"Jackie Gets Well !"
- there are loads of people on this list who will help if you need it
Get well Soon
Best Regards
Tony
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Hi JackieCanada and welcome.
I know of this roller coaster ride very well.. and only share this link with you to help you with this "ride"... it was my ride as well and I shared it publically here (this past February when I was in your shoes as well) to help others, like yourself, in holding on during your/their ride... when you read the first 2/3's, you'll understand. I hope it helps.
http://anausa.org/forum/index.php?topic=847.0
Phyl
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Thanks so much for the link, there's an incredible amount of info and encouragement there :)
I've been taking a few days off - trying not to think of my AN, treatment options, etc., to gain some prospective on life!! I don't know if its worked entirely, but I'm feeling a little for centred.
So many many thanks again. On another note you mentioned headaches. I have been suffering from headaches for a while and they've been getting worse and more frequent. I have facial numbness, and some hearing loss, which seem par for the course, but when I mentioned the headaches the surgeon seemed skeptical that they were to do with my AN. Do you have any thoughts or experience on this?
Jackie
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Hang tough Jackie.. and yes, LOTS of encouragement there and here. We're all in this together! :)
Phyl
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On the radiation of AN's causing cancer, even the odds you mention is unsubstantiated. As times move on, more stats and a better understanding of AN's is known. I recently read a report on mobile phones and AN's (another one) that did show an increase in risk from excessive use of the old analog phones over a 10 year period. the incisdence of AN's was higher. The report also mentioned that the radiation treatment may not have been the catalyst for making an AN malignant.
We won't know for sure about the causes of malignancy re AN's for probably another 10 years.
Larry
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heck, too many things in our lives/environment (including many foods that we eat) can bring it on as well. For me (and only me), I refuse to be an ostrich with my head in the sand and worry about the dose of radiation I rec'd via CK as anything else in life can give me cancer. I refuse to be scared or nervous about it when life's too short and time to live it. But, like I say, that's only my opinion.
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Jackie, welcome to our very exclusive club.
As for advice, you will get a number of opinions from a number of people. Every solution be it surgical or radiation treatment has worked for some and not for others. I am now recomending that people listen, do the research so reasonably well informed and then go with your gut feel and what you are mentally capable of handling.
My situation. I had middle fossa surgery 3.5 years ago. Have had debiliatating headaches and tinnitus every day since. 6 months ago, I found out that it had grown back. I am now in watch and wait mode. I can emotionally handle this (with lotsa help from my cyber buddies). When it grows to a bigger size then I will be having radiation treatment (Gammaknife) I will not go under the knife again!
Other posters can't handle the watch and wait (I fully understand this), other posters won't go near radiation treatment. You also need to factor in any current problems that your AN is causing.
Laz