feeling guilty, wimpy and scared

[jallison]

I just needed a release point.   I had the Gamma Knife treatment for my AN in August 2008.   The 6th month initial MRI was all good news as the tumor appeared to have stayed the same size.  So I was able to go a year between MRI's.  But the last one was suspicious and looks like possible growth again.   So back to 6 month MRI.  If it's still growing.....  Well, that's where my emotions kick in.   The surgery, any of the 3 options, are frightening to me.    And I feel guilty about it because there is many in worse scenarios.  I have no right to be scared when others are fighting worse things in their lives.  And I'm wimpy,  because I should just stand tall, deny my fear, move on.   So there it is.  I have no right to feel like this, I know I'm wimpy.  But....  here's the truth.  I am scared.      That said, I'm praying that the tumor is not growing, or that it's still reacting to the radiation and will settle back down. 
My hearing is about 90% gone from that ear and has been since before the Gamma Knife treatment.   My eye has been twitching a bit recently.    Other than that, no side effects with this AN.  Thanks for giving me a safe place just to "put it out there."
Jim

[CHD63]

Jim .....

Welcome to this forum!  You have come to the right place.  I cannot speak for anyone else but if you read many of our posts, you will find much evidence of guilty, wimpy and scared posts ..... and I fall into all of those categories at some time or other in my journey with an AN.

Regrowth (or renewed growth) is always a scary thing lurking in the back of all of our minds.  After being assured my tumor was removed "in toto" via retrosigmoid surgery two years ago, I have what apparently is residual tumor still in the IAC, so the watch goes on ......

Not personally having had radiation, others will speak to that scenario ..... but from what I have read your tumor may very well settle back down again.

Any alarming new symptom or any drastic increase of an existing symptom should be reported to your doctor.

Best thoughts.  Clarice

[Denise S]

Welcome to the forum!   Hopefully the forum will be helpful for you and if nothing else:   it lets you realize you are NOT ALONE!   I find myself to be kind of wimpy and of course scared!  But, if it weren't for this forum, I'd probably also have gone "crazy"        Not sure, but why feeling guilty??? 

Do you know what size your tumor was when 1st diagnosed?    Knowing there may have been some change in the next MRI, WELL, MRI's go in slices and sometimes can 'throw' the sizing off by up to a few millimeters depending on the slice and the angle and how precise the MRI machine is.

You mentioned your hearing being gone almost 90% before your 1st treatments.   I  think that may pretty much leave you with the Translab surgical approach (if you end up going with surgery).    The Middle Fossa is for those with good hearing in the AN side and Retrosigmoid too.....the doctors "try" to go in at an angle that might have a better chance of preserving the hearing  (which I am finding out seems to be rarer than originally thought {my opinion, I guess}).

Best wishes to you and hopefully your next MRI will be "NO CHANGE"!!!

Denise

[Dan]

I must say that I was scared too.  Retied from the military in 1995, lived through the cold war patrolling the east west German boarder, Iraq war, and Bosnia, they all didn't scar me as much as the Dr. saying I had a brain tumor. 

From what I have read though maybe it could just be late swelling before it dies.

Dan in Germany

[sgerrard]

It would be a tough world to live in if the only person allowed to be scared was the one person facing the worst thing. Plus we would all be arguing about who that was. 

Dr. Kondziolka of UPMC in Pittsburgh (aka Mr. Gamma Knife) made a point at the last ANA symposium about not being too quick to decide that radiation had failed. While it is hoped that the tumor settles down within a year, there are cases of continued growth for two years or more, before it finally stops for good. Also swelling, which is most common the first year, can occur during the same sort of time frame. He said you should see a repeating pattern of growth by several mm over each of a series of MRIs, spanning two years or more, before you conclude that radiation has failed and the AN is in full growth mode again.

So frankly, I doubt you really have a growing tumor that requires re-treatment. But you do have to endure and be patient and calm for another year or so, which is never easy. So good luck with that part. 

Steve

[Jim Scott]

Hi, Jim - and welcome to the ANA Discussion Forums.

As the previous posts illustrate; feeling scared, wimpy and, on top of that, guilty because you feel scared and wimpy is a very common reaction for AN patients.  A doctor looking at our MRI scan and saying the words "brain tumor" always has a chilling effect on rational human beings and for most of us caused a knot in the pit of stomachs and a definite tightening of the gluteus maximus muscle.  Often, we don't even hear much else he says, including the words "benign" and "treatable".   Believe me, your fears are normal and nothing to be ashamed of or apologize for, at least not here.  We know how you feel.  No one wants to face AN surgery and even those of us who have done so and came through it successfully with few or no complications would gladly pass on that particular experience.  It isn't the worst thing in the world but it sure isn't something one looks forward to, either, so I understand your feelings of anxiety. 

As Steve and others have indicated, MRI scans can vary and there is always a margin of error.  I concur with my fellow moderator, the able and astute Steve, that it's doubtful your irradiated AN has resumed growing.  Swelling and less-than 100% precise MRI scan images may be the culprit but until your next MRI session, I wouldn't allow the fears of re-growth and possible surgery to dilute your quality of life.  No need to be superficially brave and inwardly tremble, simply chose to wait until your next MRI scan before you allow your concerns regarding possible AN removal surgery to control you.  To put another way, as my late father would have said it: "don't buy trouble".  Besides, you can always come here to vent and we're always supportive and understanding because we've been where you are - well, some of us have, anyway - and we all survived.  We're not heroes, just vulnerable human beings that need support and assurance, just as you do, so we're eager to offer it it when we can.  I hope you'll accept it and use the forums as often as you feel the need.  We're here for you. 

another Jim

[jallison]

Thank you everyone for your kind words.  Denise asked the size of my tumor.   My AN was first diagnosed 9-11-06 with a size of 1.1 by 0.6.    I don't have the record on hand for the growth that forced the gamma knife treatment.  But the size today is 1.8 by 1.5.    Thanks again for your kind support.

[moe]

Jim,
It's ok to feel wimpy and scared but try NOT to feel guilty! We ANer's have been through a lot, and the emotions continue. Especially since you still have the little booger. Let us know what the docs say.
We are a good sounding board. It appears  bigger, but still less than 2 cm.
Surgery, if needed, should be OK since it is still small. We'll tackle that when the time comes.
For now, as you know, it is slow  and benign. Go about your life, let us know what the doc recommends, OK
Maureen

[mk]

Jim,

As everyone else said, we totally understand your fears and frustration. I have been going through a similar set of emotions, after experiencing sudden hearing loss and resurgence of some symptoms, at about 20 months post-GK. My doctor explained that the life cycle of the cells can be around 2 years, so this is a time frame where changes might happen. I feel much better now, my symptoms have eased and I am anxiously waiting for my 6 month MRI in April.

First of all you are less than 2 years after your treatment, so things have certainly not settled down yet. I am even surprised that you were put on a yearly MRI, the common practice is to have MRIs every 6 months so soon after radiation. "Suspicious" and "possible" growth, are probably meaningless statements. Did they specify a measurement? Was there a  change in shape? According to the stats, 30% of ANs might swell, or grow slightly, before they eventually settle. Garry (GM) from the forum is an example of this, if I remember well from his signature his AN swelled from 1.8 to 2.1 cm and stopped there. Plus, if you have any severe swelling, you would have symptoms. So most likely everything is OK, it is a waiting game, needing a lot of patience, but try not to think about it all the time.

Marianna