3-1/2 YEAR GK FOLLOW-UP... STILL ISSUES

[windy]

Hi All,

I thought I would post my 3-1/2 followup to my Aug. 2008 GK. I went this week and my neurosurgeon said there seemed be more enlargement in my tumor. He said he had reviewed all MRI scans from 2008 on and there seemed to be more size increase. He said he had "never seen a case like this before". He said it showed necrosis and now it is bigger. He advised me to send copies of the MRI's back to Pittsburgh for their review or even go and see them. As they are located several states away, I will be sending copies only. He said I could come back in 6 months for another scan, which I will be doing. I asked him what size was the tumor and he said 11 x 14 mm's. Oddly, I had just had a local scan in April 2011 where they measured the tumor as 1.2 x 1.7 cm's. However, the neurosurgeon I just saw did not have a copy of the April scan, as it was done in another city/facility. Are there different ways to measure the tumor? Also, this was the first time I had a MRI scan at this facility, as he was in a different location for appts. Does a different MRI machine make a difference?

I am confused and so tired of hearing "enlargement" issues. I was told the same thing in Aug. 2010, but later told in Dec. 2010 that it had not grown and was possibly smaller. I feel I am on an AN roller coaster. Just when I feel calmed down for a year, then I am upset again by opposing news.

Windy

[LisaM]

From everything I've read ( and I read about the subject of ANs weekly if not daily) concludes that MRIs scans can vary widely.  Everything from the machines to the technician to the Dr. and how he/she reads the scan can impact the information from an MRI.  If you can, find one place to do the MRI scan and try to have each MRI done there to eliminate this roller coaster ride.  If I were you, I think I'd want to get all of the most recent scans and have one Dr. (you trust) look at them to determine a definitive size.  Hope this helps.  I'll be going in for my 3rd MRI next week.  I'll be in the same machine, with the same technician (Megan) and the same Dr.  However if I hadn't asked that I go to the same facility, I would most likely have gone to 3 different places for the MRIs.  Health insurance often dictates where this type of thing gets done.  Continuity is not something insurance companies think about.  Fingers crossed there's no growth!

Best,
Lisa M

[Dee-dee]

You could send you scans to House in LA.  Where do you live?  Is NY an option for you to see Drs. Roland and Golfinos?

Best.
 dee-dee

[mindyandy]

Windy
I can honestly say that I completely understand your situation. I am in it myself. I had CK 4 years ago and 6 month showed swelling and 1 year showed shrinkage back to original size. MRI at 2 1/2 point showed 1mm increase which could be from measurement error or from different machine etc. No big deal. Just had another MRI 3 months ago and it showed another mm increase which is a 2mm increase since my 1 year post CK scan. All could be measurement of error. I sent my scans to 2 radiologist Dr. Medberry and one other one. Dr Medberry says he sees the increase but to wait and the other one says he sees a very small increase. I also sent my scans to House Dr. Friedman and he also said a small increase over the past 4 years. So really not a huge difference, however I develope trigeminal neuralgia. It looks the AN is touching the nerve. The past 5 days now my trigeminal neuralgia has disappeared (keeping fingers crossed) so now I'm deciding whether or not I should keep my surgery appt March 7th or wait 3 more months for another MRI.

PM me if you want to talk
Mindy

[windy]

Thanks so much to all of you for your input. Yes, it does keep you on your toes, so to speak, based on reports of various mm or cm sizes! Mindyandy, I totally relate to you and your situation. It sounds very similar. Hang in there!! I sincerely hope you do not have any more issues with trigeminal neuralgia. I will follow your story, as it progresses.

I will have to say all the MRI scans on an annual basis have been done at the same facility with the same doctor. However, this yearly scan was done at a different facility due to the neurosurgeon being located on Wed. at the building where they do GK in AL. He does do GK, even though I had mine done in PA. Also, the April 2011 scan was done at a local ER because I started having something like abnormal waves going through my head. They thought it was aborted seizures. However, they never manifest into a full seizure. I do continue to have them.

One thing I did want to mention was my hearing test was actually better than the last two yearly audiograms. Also, there is no dizziness still. The doctor considered both of these lack of issues a good sign. The only new thing is what seems to be a brain zap type issue that happens on an infrequent basis, but mostly when I am tired or have been on the computer a lot.

I hope to hear back from Pittsburgh PA. next week. I am not sure what they will recommend. At this point, I am not sure if I should be looking for a surgeon and just holding tight in a wait and watch.  

I will say the same doctor did tell me in 08 that I was not a really good candidate for surgery due to my autoimmune issues (lupus, etc,,,) and a very long list of drug reactions. Of course, all of that hangs heavy over my head. If I do have to proceed with surgery, I will be open to going elsewhere for treatment. I pray that won't be the case.

[mindyandy]

Thank you Windy. I will follow your progress as well. I do hope that they say it did not grow and it was just an error since he did not have your last scans. You can look into a surgery. I do recommend Dr. Friedman (just my recommendation) at House in LA. You do not have to take any drastic measures yet. Just because you look into a surgeon does not mean you have to jump into surgery soon. Its just to keep your options open. Your AN is not very big even if it did increase. No rush. Like you I might just watch my next few MRI's. I have not decided yet. *sigh* I like you was hoping this was all put behind us 3-4 years ago.

[lrobie]

Windy,

I'm curious about what doctors you saw in Pittsburgh and who did the GK.  I have been followed by UPMC Drs. Hirsch (ENT) and Gardner (neurosurgeon).  I have my follow-up with them on February 7th and am trying to decide the treatment route.

Lisa

[PaulW]

A few things to consider.
There are recorded incidence of AN's swelling/growing and shrinking in cycles for upto 3-3.5 years before they shrink and the treatment is still effective.
The other thing is there is differences in how you measure an AN.
As the AN gets bigger in size they actually stop measuring the intracanilicular portion.
So if your tumour was 18mm x 16mm x 18mm.... they may actually totally exclude the 10mm x 5mm x 5mm tail in the IAC
If your tumour is shrinking at some point they may actually add the IAC portion back again.
This can give the impression of growth from the measurements on the report.
Also its really the tumour volume that counts, as the tumour dies it often becomes less round and while the measured size across the widest points might not change that much, volume often decreases.

I believe also that they will be looking for areas of changed and increased enhancement on the MRI.
If they see none they will be less concerned.

You may just have one of those AN's that take a while to settle down after radiation.

Fingers crossed that all goes well

[mindyandy]

Paul
thank you for the information. From what I have read online & on the cyberknife forum enhancement is meaning less. Didn't prove growth or no growth.

[windy]

Lisa, I saw Dr. Lunsford (neurosurgeon) who was accompanied by Dr. Flickinger (radiologist) on treatment day. I wish you the best of luck in your treatment!

Paul and everyone, thank you so much for the information you provided! It means a lot and was also very helpful. I know my April 2011 scan said there was a 2 MM increase in size from the 2009 scan (both local ER visits) with "enhancement more homogeneous in appearance than on prior 2009 study". I am not sure what that means, but two neurologists said not to worry about the April scan. I do not have a copy of the report for the Jan. 2012 scan.

I will say the neurosurgeon in my area that reviews the MRI's is the head of neurosurgery at Univ. of AL - Birmingham and also does GK, as previously stated. His speciality is malignant gliomas. He does have familiarity with GK, so I feel he is accurate in his measurements. He personally reviews the scans himself and does not rely on the measurements of the radiologist. He does not have the volume of GK patients that Pittsburgh is used to treating, but does have knowledge. He told me after seeing the enlargement that he was not really worried, but I told him I was since it was larger and this is the second time I have heard it, as well. Also, after having to forward my 2010 MRI scan to Pittsburgh, I was sent a letter from Dr. Lunsford stating that they see this type of issue in 4 percent of cases with a 2 percent chance of resolve. When they saw some shrinkage about 4 months later at UAB, I was feeling hopeful. I will just have to wait and see it seems.

I am going to take a trip for a few days and release this from my mind. I will deal with it when I return and get some further answers from Pittsburgh. Thanks everyone!

[PaulW]

I believe, enhancement changes or no changes in the first two years really mean very little.
However I believe increasing enhancement 3 years onwards maybe a sign of failure.
Please note I am not a medical professional this is just my personal opinion.

[mindyandy]

Paul I know this is your opinion & its very much appreciated. I have read it some where too about swelling & shrinking cycles. I cannot find it now. Do you or could you find the link?

Thanks Mindy

[PaulW]

Here's a graph showing tumour size changes after Gammaknife
There are a few that didn't shrink until the 3 year mark.

http://www.ajnr.org/content/21/8/1540/F2.expansion.html

[mindyandy]

Thanks Paul that helps a lot. Waiting is the hardest part.

[windy]

Just a quick note before I leave today... There is a guy on the forum (can not remember his name), but he did have a growth issue they thought. He had radiation and was advised to have surgery after they saw what they thought was growth. After a 3 or 4 year range, the tumor collapsed in on itself and was about half the size. I am going to look him up when I get back. Just words of encouragement....