3 yrs post FSR, MRI gives doubts

[Erik]

Hi all,

Three years ago I've had Novalis FSR on a 3cm AN. Since then I've had regular MRI's done and everyhting was stable. Last week's MRI cast doubts on the status quo of my AN. The radiotherapist (my usual radiotherapist was on holiday - so he was replaced) found a 1mm increase in size (so 31 mm instead of 30). However, the position of my head, and picture slice were not at the same position, so it's difficult to compare. On the other hand, 1mm is about the precision/error that exists on MRI, no ?
My audio test showed no increase in hearing loss from a year ago (although 6mths ago my hearing was 10dB better overall-which was quite surprising). Other symptoms like numbness, facial spasms,...have not changed.
I find the situation quite scary, as I don't want to through surgery which would probably leave me with facial paralysis and other serious consecuences.

Anybody else had these unfortunate MRI's ?

PS: Many thanks to the ANA website - which was a big support 3 years ago and still is today.

[ppearl214]

Hi Erik and welcome. Great to see you here!

we know that there can be slight differences in MRI readings... machine changes, radiologist doing the read, etc.  I guess the important question would be this:  Do they see any kind of black line or blackness to show the necrosis? Can you ask your radioligist who was away to re-read the films since he's more familiar with your growth?  Just a thought... hoping others can chime in  as well.

Hang in there...
Phyl

[GM]

Erik,

I fully understand your concern.  I am a Gamma Knife patient and was treated in Nov of 2003.  My tumor is currently hanging out at 2.1cm, it started out as 1.8cm...it swelled from the treatment.  Because I was dealing with two hospitals, each read the MRI differently!  So I asked the same question as you on another site and received a private email email from a Doctor. 

Here is a piece of the email:

"I would require absolute proof that your tumor is definitely growing.  I can't tell you how many times we have seen things that were called growing tumor that actually were not in retrospect. A couple of millimeters would not do it for me. We do not require tumors to shrink to call it a success since not all do. If a patient is 5-10 years out from treatment with no evidence of tumor growth, I think it is highly likely that the tumor is not going to grow and that is an operative definition of success. I would not be in any hurry."

So, that's how I look at things now...I'll need definite proof before I "re-Zap" my head or crack it open to take out the invader...did I mention that neither of those sound inviting at the moment?   

Gary

[amn70]

Hi Erik,

I am by no means trying to alarm you but I hope you are having another MRI done shortly to stay on top of probable tumor growth. I had FSR at Johns Hopkins in October 2001. After my October 2003 MRI (I was having MRI's every six months after the FSR), the radiologist (at the local open MRI center I had my MRI's at) detected growth The scans were sent to the Johns Hopkins docs who dismissed the radilogist's claims saying it was the "angle" in which the scans were being read that caused the radilogist to detect tumor growth. I had my next MRI in April 2004 and that is when the Hopkins docs had "suspicions" about tumor regrowth (hmmm, wonder what changed their minds?). My October 2004 MRI confirmed tumor growth--my tumor went from being 8mm (initial diagnosis in 2001) to being 1.5 cm. My issue with those Hopkins doctors that followed up with the MRI's I sent to them was "how the heck did you detect growth so late in the game???" It leads me to believe the local radiologist who initially viewed my scans before sending them out to Johns Hopkins was correct in his eralier findings!!!! Take care and keep us posted.

Angela

PS--I did have to have my tumor removed back in January 2005 through translab surgery.

[amn70]

Erik,

I must also add that it was the recommendation of the Johns Hopkins doctors after my October 2004 MRI that I have the tumor "extracted as soon as possible," hence why I had surgery two and a half months after that MRI. They said there was no way three years post-FSR that there was simply residual swelling of the tumor. They said the tumor indeed had grown and based on my age (34 at the time) and the rate at which the tumor had grown that I get my personal and work affairs in order and make arrangements for neurosurgery at the earliest possible date. Needless to say, that was a very challenging time for me. All the best to you.

Angela

[jamie]

1 mm is by no means an indication of anything, MRI's are taken in slices, so the MRI can get a slice it didn't get previously that may be a mm or so off. Sorry to hear about the FSR failure Angela, I wonder why it seems most radiosurgery failures occur after FSR at John Hopkins, I don't read about that many from gamma knife, and up to this point CyberKnife either....maybe it's an accuracy or targeting issue?

[Erik]

Hi,

Everybody thank you for your responses. I have an appointment with my regular radiotherapist in two weeks.

Meanwhile I checked my MRI's scans at home on the computer and there is still necrosis (black area) at the inner center of the AN.
About the size, I don't see any major difference from year to year. Depending on the year and scan there are minor differences in shape .
The imaging services from the hospital always give me a CD with the scans - so I have them at hand.

Angela, I'm very sorry to hear things haven't worked out with your FSR. What was the dose that your AN received ? Mine received 25 x 2Gy (so approx. 50Gy in total). Doesn't John Hopkins do the 3x or 5x FSR with higher doses?

Erik


PS: my daughter of 6 saw the scans and thinks it's the echography from her little brother (of now 8 months old) - cute !

[Sheryl]

Erik - just to add my two cents.  I've been a "wait and watcher" for over 4-1/2 years.  Each time I had an MRI it was a little different.  Different machine, different technician, etc.  I was told that they do not consider a 1 to 2 mm. change anything significant - just picture if your head was 1 mm off in positioning.  My first MRI was read at 9 mm and the last one was read at 12 or 13 mm.  They think the initial one was under-read, thus being larger than the 9 mm.  It is up against the brainstem but not pressing on it.   I'm currently "lining my ducks up in a row" and checking out facilities for radiotherapy.  I have two location options - Florida and Massachusetts - as we spend approximately half a year in each place.  Since I carry my head and my husband's head (he had a benign meningioma removed two years ago) MRI's with us, I just love the new CD technology!! 
Sheryl
p.s.  I should add that my tumor is on the 9th cranial nerve as opposed to the 8th (acoustic) and the symptoms would be trouble swallowing and gag reflex - which have not shown up at this point.

[jamie]

p.s.  I should add that my tumor is on the 9th cranial nerve as opposed to the 8th (acoustic) and the symptoms would be trouble swallowing and gag reflex - which have not shown up at this point.

Hi Sheryl, I forgot we were in the same boat, just wanted to let you know it's been just about a year since my CK and there have been no nerve issues for me whatsoever....I read that the lower nerves are more resistant to damage from radiation.....

[amn70]

Erik,

I was given FSR in smaller dosages over a period of five days compared to the standard one shot large dose with gamma. Please let me know what happens and all the best.

Angela

[Erik]

Hi all,

I saw to my "regular" radiotherapist last week, and he confirmed that there is indeed some increase in size.
The recent MRI scans were reconstituted in a 3D model and compared to those of of last year, and there is "definitely" an increase in size, he says. On the other hand it is still much smaller than the size at diagnosis in 2003, so I shouldn't worry too much.
Anyhow, I'm back to the 6month schedule of MRI scans, and another consultation in a month to see what the options are in case of intervention.


Greetz

Erik

[Kilroy1976]

This thread illustrates what I feel is the primary downside to treating an AN with radiosurgery. The patient takes what should be a decisive action to treat the tumor, but then has to wait (and wait and wait) and occasionally watch. After a year, give or take, the best that you can hope for is to see the same tumor with a little black line running through it. As the years pass, maybe you can watch the tumor turn blacker and blacker. You may even see it begin to shrink, but it could be difficult to tell whether it is actually shrinking or if it appears to be shrinking due to deviations in the MRI process.

You can also get the unfortunate situation that we have here, possible growth or, maybe worse, an MRI that falsely indicates growth which initiates further and unnecessary action on the part of the patient and their doctors. 

Sorry to be such a drag, but radiation is slower than steam off sh*t and it's important to mention that once in a while. Best of luck Erik, we're all pulling for you.

[mll]

I'm new to this site.  I was diagnosed three years ago and had gamma knife.  Like you, I have had MRI's every year with little change.  I just had an MRI on Monday and was told there are signs I'm "still having problems" in the area of the tumor.  I ofcourse can't see my doctor until Monday.  I read your post and was given hope.  I just recently changed doctors so hopefully they're reading the MRI's differently.  I'm still in the dark for now since I don't really know what the doctor meant by problems.  Please keep me posted on your condition.

mll

[GM]

MLL,

Good luck on your appointment...hope all turns out well.  Don't forget to be an involved patient...be active in the decision making!

Gary

[mll]

Hey guys,

I saw my doctor today.  Apparently the primary care physician who initially read my MRI thought I had the tumor removed when I had gamma knife.... The tumor has actually not grown thank goodness!! He also said I don't have meniere's -something I've suspected.  He said the rinning in my ear, dizziness, nausea, etc. are all effects of the radiation.  So no more diurectic and low sodium diet for me.  I am looking to get another opinion just to confirm everything but that was the best news I could've gotten.  It did bother me because he asked me why I even went with gamma knife as opposed to surgery. Anyway, thanks guys.


mll