seeking reassurance

[becknell]

Some of you might remember me. I was quite active on this board in 2005, after my husband was diagnosed. Here's my problem. My husband who is 47 years old had surgery for a 3.5 cm An in Aug. 2005 at Duke University. Some of the tumor was stuck to his facial nerve AND to the brainstem, so his doctors left some of the tumor to avoid causing damage. Aside from that he had a very good outcome. He had Gamma knife in May 2006 at the University of Virginia. Since then all has been well. He had his annual MRIs and there was no change. This month he went back for his 2-year post Gamma Knife MRI and the doctor said that the MRI showed it was 1 mm larger. He was not overly concerned as he said 1 mm could be a difference in how they measured it. Still we were not happy as we thought we had left all of this behind us and went on with our lives. When my husband asked what he would suggest if the tumor is indeed growing, he said he wasn't sure because they didn't remove it all because it was stuck to the brain stem and they didn't want to cause serious damage, it was also stuck to the facial nerve, but I don't think that was the biggest issue. He just asked my husband to come back in another year for an MRI. Now I feel worried. What do I do? Worry for another year? I just want to talk. Thanks.

[sgerrard]

The standard number for measuring error on an MRI is often given as 2mm, so a 1mm difference is not enough to worry about. It could even be a bit of very late swelling as the last bit of tumor dies off. Were all the MRI's taken at the same facility, and read and measured by the same radiologist? There is also some variation between different people looking at the MRI, etc.

A while back, there was some discussion about having a second radiation treatment. Although it is not very common, there are reports now of several centers doing this, with apparently good success. It may have been Cyberknife rather than Gammaknife. I don't think you have anything to worry about, but if something shows up next year, there will still be some options available. As they say, cross that bridge if and when you get to it. Or, as OMG16's son once said, no sense in worrying until you have something to worry about.

Best wishes,

Steve

[becknell]

Thanks for the response, Steve. Yes, all the MRIs were done at the same facility, all done at Duke, but I doubt that they were all read by the same radiologist. I don't want to worry about this, and I know it's not necessarily an indication that the tumor is growing, I just want to put it behind us. Will try not to worry. Thanks

[4cm in Pacific Northwest]

Sunny disposition Steve  is quite correct about the measuring.

Focusing  on what you said here,
         Ã¢â‚¬Å“He was not overly concerned as he said 1 mm could be a difference in how they measured it. Still we were not happy as we thought we had left all of this behind us and went on with our lives.â€?   

I still think you can put much of this behind you and still keep moving forward. I think you should put some worries aside and see what the MRI outcome is - next year. Remember that typically these are not fast growing tumors and he could be quite right- it could have been how they measured it.

Hugs,


Daisy Head Mazy

[Jim Scott]

Hi, Becknell:

I can understand the anxiety even the slightest sign of a re-growth can generate.  Still, we have to be realistic and acknowledge that whether we undergo microsurgery or radiation (or even both) and although it may be a remote possibility, re-growth can occur, sometimes years later.  1 mm is pretty inconsequential...unless the AN being checked is yours.  That being noted, I can see why you and your husband are upset and seeking reassurance. 

Frankly, I think that Steve has already offered the best reassurance there is, based on the demonstrable fact that MRI scans do have a slight margin of error, which could very well explain the 1 mm difference in your husband's latest scan.  My suggestion is to simply go on with your lives as usual but with the realization that your husband's AN could, maybe, possibly re-grow and have to be treated in the future...but perhaps not.   I suspect that radiation, possibly FSR, might be used for a future treatment.

While your concern is quite normal, there is no real need to allow a 1 mm difference in an MRI scan to color your lives for the next year. The odds are heavily in favor of you and your husband truly having left acoustic neuromas behind...for good.  I don't think I'm being overly optimistic when I state that until you both know for an absolute medical certainty that the AN is re-growing, I would refuse to be any more concerned than your doctor apparently is, which is hardly at all. 

Jim   

[Sue]

And this, Becknell, is why Steve and Jim are now moderators on this site.  Smart, reasonable, caring, and knowledgeable!  They are right on the money as far as I'm concerned and I think they gave you wonderful advice.  There is nothing you can do about that darn AN, and all you can do is "let it go" and see what happens down the road.  Worrying about it will make no difference whatsoever in the outcome - whether that means no growth, or treatment again later on.  I know, - easier said than done.  But, just try to shove it back into some  mental closet  and shut the door and deal with it when the next MRI rolls around. 

Wishing you all the best,

Sue in Vancouver, USA

[GM]

Becknell,

I can relate to your posting!  I too had GK at UVA, and my measurement hunted depending on what Doctor read it…all of this over a three year period!  Talk about something to stress you out!

I also deal with two hospitals (the military side and UVA)…and would you believe it that they read it differently?? 

I wouldn’t sweat over a few millimeters, especially if your husband hearing is still unchanged, there are no new occurrences of facial twitching, numbness, etc, and if he feels overall fine.

I would suggest an annual MRI…I have them and will continue to have them until my tumor shows some shrinkage.  Currently it’s in a holding pattern.  I would also suggest an annual hearing examination to see how the hearing is doing…

GM

[becknell]

thank you for responding, Gary, it's good to hear from someone who has faced a similar situation. The hearing is a non-issue, because my husband lost all his hearing on that side in the surgery.

As it stands, the U. of Va. asked us to send the scan that was done at Duke to them and they are going to compare it to the treatment scan (which of course would have been taken on a different MRI) and see what they think.

What concerns me most is it sounds like another surgery would be risky, as he already had one and they could not get it all, but it seems like another radiation treatment would be risky too.

I am trying not to think about it. 

[GM]

Personally,

I wouldn’t do anything unless I was proven beyond a shadow of a doubt (a few millimeters wouldn’t do it for me), that the AN was growing.  Also you have up to three years of minor growth after a radiation treatment. 

Mine started at 1.8cm and grew to 2.1cm over a three year period.  I just scheduled my annual MRI, and have a follow up with the doc for a hearing test and the results.

Which is kinda weird because I always get a CD-ROM copy and read them myself to see what’s different.  Yeah I know he’s the doc but I’m hear to tell you I saved myself a lot of grief over this stuff by being firm and asking questions.

Please read my post “It’s about timeâ€?  in Radiation Radiosurgery about this topic.

http://anausa.org/forum/index.php?topic=3940.msg41979#msg41979


Gary

[becknell]

I am SO GLAD to hear from you, Gary. Your post about the disagreeing hospitals was interesting. Fascinating, actually.

I found your comment about the possibility of three years of minor growth after a radiation treatment very interesting. I have never heard that, and I've spend hours and hours of time reading about AN treatment. When my husand was diagnosed, I literally spent three months reading about Ans for a couple hours aday and I grilled every doctor we spoke with extensivley, including Steiner for a couple hours. We are not uninformed health care consumers, but I've never heard that, and I would be very interested to know where you got that information.

We would not do anything at this point unless we were absolutely convinced it was necessary. But it's hard to even think about it being necessary.

[GM]

I was told that information by Dr. Steiner when I met with him for my treatment...that's why they have a three year wait before deciding retreatment by radiation.  I believe I've also read it somewhere...

Tumors respond so very differently to radiation...some die immediately, some grow and then remain dormant, some grow and then die...it just depends. 

It's amazing, who would have thought that we'd wind up with a minor in medicine over this      

Gary

[sgerrard]

Gary and Becknell,

You might be interested in this recent post by jb on swelling. Among other things, the graph clearly shows that swelling can continue for two years, sometimes more, and sometimes there can be quite a lot. There is also good data and statistics in the summary info. The good news is that all of the cases eventually went down again. I think it is an important reference on the range of possibilities for post radiation.

http://anausa.org/forum/index.php?topic=6493.msg63049#msg63049

Steve

[becknell]

This was so informative. I knew I would get good information from coming here! I'm so glad I did. Thank you for the link to the graph, Steve. That really shows how much variation there is in tumor size change. Based on that information, a minor change probably isn't anything to worry about. I would be interested in knowing the source of that info if anyone knows where it came from.

Gary --- LOL! 

[sgerrard]

Actually JB included a link at the bottom to the full article, which appeared in the American Journal of Neuroradiology in September 2000:

Full text: http://www.ajnr.org/cgi/reprint/21/8/1540.pdf

JB is a scholar and a gentlemen in my book.

The full article is quite interesting, and includes several series of MRIs, showing the course of different ANs after radiation treatment. All radiation patients should have a look, and ponder the question, "Which course will mine follow? Let's wait and see..."

Steve

[jb]

Thanks, Steve!  How much do I owe you?   
Might I add you're doing a fine job since your recent promotion.  I've never seen the forum so moderate!

Becknell,
I think I met you and your husband at the Charlotte ANA meeting last year.  I'm the guy who was considering Cyberknife at Georgetown, which is what I ended up doing later in the summer.  Anyway, sorry you guys are facing this uncertainty.  It doesn't sound like your husband is having any new symptoms though, so that seems like a good sign, in addition to what everyone else has mentioned.  If you decide you want a second (or third) opinion, I've been following up with a local radiation neuro-oncologist out of CMC that seems really good.  Just let me know if I can help.

JB