2-year MRI results - show growth in AN

[frank]

Hi
I have not posted in awhile so I need to update my status.
Last month I had my yearly MRI to check for growth. My hearing test showed no change. The MRI shows the AN has grown and the Doctor reading the MRI is now using terminology that I am not familiar with. The report states that "there has been slight interval increase in size of the enhancing mass in the right internal auditory canal, now with a small mushroom shaped component that extends into the the right cerbellopontine angle cistern at the level of the porus acusticus internus." "The maximum traverse dimension is 1.2-1.3 cm, is approx. 6 mm in AP diameter in the intracanalicular portion and 5 mm in superoinferior dimension. The CP angle component measures 7-8 mm AP diameter and approx. 3 mm in traverse diameter." Can anyone explain what this means in simple layman terms that I can understand?
My local ENT seldom sees a patient with an AN so he hasn't been able to provide me with much in the way of explanation and guidance. Two years ago, when we first discovered my AN problem, he referred me to Dr Charles Woods in Syracuse who is a surgeon. I believe Dr Woods is associated with the University. (MY ENT refers to him as the "Professor".) I guess I have been using Dr Woods as a consultant to explain my options. On my initial visit in 2007, we discussed "watch and wait". We also discussed  radiosurgery as the best course of action for a person my age (71) - when and if the time comes that I need to have something done. Dr Woods does not perform radiosurgery. I have an appointment with Dr Woods on June 5.
I am now at the point where I think that I should have something done, even though I feel well. I consider myself to be good shape. Having been a competitive swimmer in college, I still swim 300 to 400 laps every week, year round, for exercise. In the summer months I play a couple of rounds of golf every week. The only symptoms I seem to have is the constant tinnitus in my right ear and difficulty in group settings where there is a lot of background noise and/or many people speaking at the same time.
After reading all of the posts for the past two years, I am leaning toward CyberKnife as a preferred treatment approach. I am hoping that Dr Woods, who does not perform this procedure, might refer me to a facility that does. Two years ago when I met with Dr Woods, he mentioned a facility in the Binghampton, NY area (77 miles away) that performs radiosurgery. My online research shows that the Cyberknife Center of New York in Johnson City, NY as a center that may be suitable. Anyone have any experience with this facility?
That's about where I stand today. Would appreciate any comments or words of wisdom anyone cares to make. Thanks in advance.
Frank
 

[ppearl214]

frank,

great to see you back! glad to hear you have been doing well and will try to help you here.

"The report states that "there has been slight interval increase in size of the enhancing mass in the right internal auditory canal, now with a small mushroom shaped component that extends into the the right cerbellopontine angle cistern at the level of the porus acusticus internus." "The maximum traverse dimension is 1.2-1.3 cm, is approx. 6 mm in AP diameter in the intracanalicular portion and 5 mm in superoinferior dimension. The CP angle component measures 7-8 mm AP diameter and approx. 3 mm in traverse diameter." Can anyone explain what this means in simple layman terms that I can understand?"

Ok, here goes.....

the right internal auditory canal (think of a straw on its side) contains part of the AN... .but towards the end of the "straw"..... with another hint of the AN sticking out (in a mushroom shape) of the end of the "straw", into the Cerbellopontine Angle Cistern (CP Angle region).... so, in laymen's terms, it is sticking out but the good news is this... its still deemed small (1.2 - 1.3cm)... and it still gives you options, should the time come that you decide on doing anything about it.  What I would like to know is what does the radiologist mean by "slight interval increase in size"?  We know head MRI's have (on average) a total margin of error of approx 2mm.  Now, different docs/radiologists may give different measurements and many factors will weigh in when doing measurements of an AN.... so, does he mean slight growth within the total margin of error of approx 2mm?   Not sure exactly how much of a difference he is noting from past MRI's and were they measured by the same person?

So, that is about as laymen as I can get... btw, it's not a "bendy" straw    (oh, work with me.. trying to make you feel better!)

More good news, no interference with the brainstem... so, another blessing.

I have not had experience with the CK center you note, but a few of us have had it done in Boston, MA.  You can also check with the docs on the CK Patient support forums (they volunteer their time there) at:  www.cyberknife.com, so you can get answers to your specific questions about the facility.

I hope this helps... and please hang in there. Glad to see you again!
Phyl



(addendum:  Ok, Frank, just read your signature line and you are noting some AN measurements from the past 2 years... so, if your AN was 10mm (10mm = 1cm) 1 yr ago and now it is approx 1.2cm... then, you are at the total margin of error for head MRI's at approx 2mm... so, all in all, not really doing much of anything... you are within the total margin of error for the past year... I'd take that as good news... truly! Phyl)

1st MRI 8x5x6 mm  4/07
2nd MRI 10x5x5 mm 4/08
3rd MRI 4/09 1.2 cm

[Jim Scott]

Frank:

Thanks for posting.  I'm not a physician (and neither is Phyl) but I agree with her astute observations.  Her explanation of your MRI report was excellent.  Your AN is quite small, your symptoms are relatively mild and not increasing, which is a good sign.  You certainly seem fit, which is a plus.  I wouldn't be anxious to rush into irradiation treatment but if you are advised by a physician to do so and the idea seems prudent to you, be prepared to travel some distance to obtain the best treatment by the most experienced doctors.  That would be physicians - usually radiation oncologists - who have lots of experience treating acoustic neuromas and have a good success rate with the patients they've treated.  I suggest that if you seek CyberKnife treatment, try not to limit yourself to a narrow geographical area.  The cost of (inadvertently) choosing an inexperienced doctor can sometimes be catastrophic for the patient.  Be informed and open to travel.  It's worth it.

Jim

[Kate B]

My online research shows that the Cyberknife Center of New York in Johnson City, NY as a center that may be suitable. Anyone have any experience with this facility?

Frank,
Both Phyl and Jim have eloquently given you some feedback relative to your post.
The only thing I might add is that you post this question in the Physician section with Johnson City, NY in the byline. 

That being said, I am also of the mindset that sometimes the short term inconvenience is worth the longterm outcome by being able to use a doctor with experience in the type of treatment you seek.

All the best,
Kate

[frank]

Phyl:
Thank you for the straw analogy. To me it seems like the internal auditory canal (the straw) contains the AN and then it mushrooms out at the of the auditory canal.
The MRIs were not read by the same Doctor. In fact, the facility where I had the most recent MRI performed was not the same due to some issues with my medical insurance.
Jim:
Appreciate your comments about not being afraid to travel to a facility with lots of experience in treating ANs. I admit that so far I have been trying to stay close to home - but living in upstate NY may not be the ideal local for finding a nearby Center of Excellence. I will be doing further research into this in the near future.
Kate:
Thanks for the suggestion that I post my question about the Johnson City NY facility in the Physician section. If my upcoming appointment with Dr Woods in Syracuse results in his still mentioning the Johnson City facility, I will follow your suggestion.

[ppearl214]

Phyl:
Thank you for the straw analogy. To me it seems like the internal auditory canal (the straw) contains the AN and then it mushrooms out at the of the auditory canal.
The MRIs were not read by the same Doctor. In fact, the facility where I had the most recent MRI performed was not the same due to some issues with my medical insurance.

Hi Frank,

My bad by not starting my original post by noting I'm not an MD, but.... have read too many MRI's (of my own, with dr's assistance) that I've learned over time... .like many on this site. 

You are correct, from my understanding..... the "straw" contains a portion of the AN with the rest of the AN, sticking out at the end of the "straw"/IAC (internal auditory canal) in a mushroom shape (mushroom "stem" still in the IAC, then blooms out as mushroom cap in the CP angle region).

We have discussed and learned that different facilities may use different MRI machines... which then may result in different "interpretations" of the films by different doctors.  I can share with you that my CK radio-onc does one measure of my AN... then, the CK neuro-onc (on the same CK team) will measure my AN and it turns out different than what my radio-onc measures.  It can depend on angle to angle measurements... oh, so many different factors, thus, the total margin of error of the MRI reads.  I take what my 2 docs say, then do an average and figure it's close. Most importantly, they both tell me my AN is "done deal", so I go for that!   Docs have shared with me that the only true way to get a precise measurement is by cutting/taking it out.  Thus, another reason for the total margin of error with the films.

Hang in there! Glad to help.

Phyl

[Keeping Up]

Need this part to make sure I get my description ...

"there has been slight interval increase in size of the enhancing mass in the right internal auditory canal, now with a small mushroom shaped component that extends into the the right cerbellopontine angle cistern at the level of the porus acusticus internus." "The maximum traverse dimension is 1.2-1.3 cm, is approx. 6 mm in AP diameter in the intracanalicular portion and 5 mm in superoinferior dimension. The CP angle component measures 7-8 mm AP diameter and approx. 3 mm in traverse diameter."

I am no doctor but can provide my input on what I know about intracanicular tumors - and what I have been told.

I have been told that I needn't seek any treatment (assuming no other symptoms aside from hearing loss/tinnitus) until the tumor reaches approximately 1.5 cm extracanicular.  At this point, my tumor is 8mmx5mm - all intracanicula. I haven't even gotten to the starting line. Your tumor now has reached the starting line with an extracanicular portion that is 7-8mm by 3mm.  You have a fair bit to go before you reach that 1.5cm (and could be as large as 2 cm before being pressed for treatment).  So, you shouldn't feel that you need to seek treatment if your ENT is saying you can continue the watch & wait (and symptoms are manageable).  

I am 37 years old and am being strongly encouraged to wait so don't think your watching pattern is solely based on the few extra years you have on me (bet you are in better shape!)

So, I guess my words of wisdom are - no need to seek out treatment if you are happy with watch and wait.  Treatment will more than likely not help your hearing improve and may cause it to worsen quicker.  This tumor may never reach a size where it needs treatment.  But, do agree, that a good experience team is critical to the success.

[Larry]

Frank,

Agree with previous comments about getting "experienced advice". i wish i had done that originally.

Having an AN is horrible and a very specialised treatable problem but make sure you get the right advice from those well versed with AN's.


Laz

[ppearl214]

Hi Keeping Up.

Thank you for sharing this.  As we know, "individual results may vary" and each situation is unique onto itself.  There does seem to be a big discussion as to when to treat AN's. I've heard some mention what you have shared... I have heard docs mention only when an AN becomes "symptomatic".  I have not heard any specifics anywhere (maybe someone else can chime in on this) about it being a certain size extracanicular (ie: once it hits 1.5cm)... as it may depend on exact location as well.  I totally agree that if all concerned (the patient, the docs) are noting that no need for treatment if its not doing anything, but.... I would suspect it also has to be based on the particular situation/patient and the symptoms, rate of growth, direction of growth, exact growth location, etc.... (ie: many personal factors).

Your's is still small (at 8mm) and genuinely hoping it stays that size and no further symptoms arise.  Truly... let's hope it literally does "nothing"

Continued wellness wishes!
Phyl

[Keeping Up]

Hi Phyl

I completely agree - many personal factors - just sharing my information that I have heard.

Frank hasn't suggested any medical professional has encouraged him to seek treatment so I assumed sharing my individual results may provide some confidence that perhaps no  treatment for several more 'mm' is not necessarily out of the ordinary.  Obviously, I wouldn't take my word but if interested would raise with the doctor who is providing the AN guidance.

You make a good point about the extracanicular tumor - I have read very little on this site about distinguishing between intracancicular and extracanicular tumors.  I would be curious if anyone else has heard about the exclusion of the intracancicular portion when measuring tumors and suggesting treatment options if size was the only issue and assuming that intracancicular tumors aren't close to the brainstem (i.e. I have been told that I would be encouraged to seek treatment when the tumor reaches extracanciular measurement of 15mm or 1.5cm.)

So - just sharing my opinion.  I want to hear as much as possible from those in the watch & wait category - what and why they were told to do so something or not do something.  I won't believe all of it without backing from my doctors, but appreciate the information.

Ann

[suboo73]

Hi Frank!  So good to hear from you.
I too am in W & W and here is how the doc described my tumor - 1/2 in and 1/2 out of the ear canal!
Not only that, but said it us 'technically' already touching the brainstem, which i didn't think would be correct at about 1 cm.
(Guess i better go look at the MRI pictures again!)
Then he says - 'ok, your tumor looks unchanged after 6 months, but i will be REALLY interested in the next MRI in Dec. 09'
Oh my gosh! - And his final words - 'I would advise doing something (treatment) when it reaches 1.5 cm.
(I am 53 years old.)
-----------------
Well ok then, doc!!! - i was surprised by the when to do treatment statement.  And, i have a sister with an AN at 2 cm + who has not had treatment yet....
-----------------
So let me just say that i think the others before me have accurately described your AN in layman's terms.
Most importantly, i would encourage you to seek an experienced doc as well.

I live in Virginia and have been to John Hopkins and UVA.  But if i seek treatment, i am thinking CK and Stanford, CA.  If that is not possible, then D.C.
I believe you have many good options not too far away.  I don't know about you, but i am very picky about this whole treatment thing because it is MY brain!

Please keep us posted!  I hope you find the answers you need. 

Sincerely,
Sue

PS  I have had only 2 MRIs on 2 different machines - the last had a 1 mm difference, so it was not significant.  I am sure it would be good to stick with one machine as much as possible, so i will try to do that in the upcoming days.

[ppearl214]

You make a good point about the extracanicular tumor - I have read very little on this site about distinguishing between intracancicular and extracanicular tumors.  I would be curious if anyone else has heard about the exclusion of the intracancicular portion when measuring tumors and suggesting treatment options if size was the only issue and assuming that intracancicular tumors aren't close to the brainstem (i.e. I have been told that I would be encouraged to seek treatment when the tumor reaches extracanciular measurement of 15mm or 1.5cm.)

Hey Ann,

totally agree as I have not seen much here (after 4+ yrs) noting extracanicular AN's.  Thought...... maybe start a new discussion in "AN Issues" inquiring about those that have been diagnosed with extracanicular AN's and see what the docs are saying. I'm curious if there has not been much on it iin the past as maybe most are diagnosed with a higher % IAC vs. EAC.  If you want, go ahead and start the discussion....... and let's see how the responses go.  Maybe worth a shot and we can learn from it!

Phyl

[Sheryl]

Hi Frank - I'm a 7-1/2 year W&W for a 9th cranial nerve schwannoma - like an AN but not on the 8th cranial nerve.  It started out at approximately 9 mm in November of 2001 and last MRI (11/07) was approximately 13 mm and not causing any problems.  Between my husband, who had another type of benign brain tumor (a meningioma) surgically removed and then CyberKnife upon regrowth and myself, we've seen numerous doctors.  The one common comment from all of them was "try to have your MRIs done at the same machine/facility".  Since we split our time between Cape Cod and Florida, this has been difficult so the margin of error (1-2 mm) really enters into our readings.
Keep us posted,
Sheryl

[ppearl214]

possible-of-interest read:

http://www.cyberknife.com/Forum.aspx?g=posts&t=1774#jumptobottom

Dr. Medbery, when asked about the total margin of error, noted the last comments in the thread:



"radsrus  Posted: Tuesday, May 19, 2009 8:06 AM   
 
Joined: 10/10/2008
Posts: 859


 There are a lot of reasons measurements can differ, including at least different window/level settings, different slices on which you measure, inaccuracy in placing the points of measurement, choosing different places to measure. I think 2 mm is a conservative estimate of the differences

 
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102"

[Vivian B.]

Hi there,

After reading these posts I started thinking, my AN is moving downward toward the auditory canal as opposed to the other way around toward the brain stem. It will affect the facial nerves eventually. However, my Neuro. When I did the conversion between cm and mm. it seems that the size in total is 19mm. I am not sure if this is the right way to take the measurments, but the MRI read 1.9 cm by 1.5cm by 1.6 with 8mm into the ICA. When I told the neuro that I did not want to lose the window of opportunity for radiation, he said I still had 4mm to go. Does this sound right?

My MRI was taken in Buffalo in an open machine and the Neuro said that he measured it himself on his computer and the measurements were correct. Does this sound right?

Vivian