AN Treatment for Psychological Reasons Only

[Nancy Drew]

Hi Everyone,

When I made this post, I didn't think I would get very many replies.  Everyone has answered so compassionately, and it has truly been helpful hearing how all of you have dealt with making your decisions.  I know everyone here has been through or either going through this process of making a decision that is best for them.  So, I know that I am not "unique" in having all of these feelings.  I know that in your case Jim you really didn't have time to make a decision because of that big blob of a tumor in your head.  You are such an amazing person, and I appreciate that you monitor this board and give such helpful info.  Cudos to all of you who also visit here on a regular basis and give good info and support.  I am very thankful that my AN is tiny.  I do have more choices at this point.  It would be reasonable to W & W, and in the end I might just do that for awhile longer.

My AN was discovered by accident in Dec. 2005.  It was small (and still is), and I wasn't having any real problems--probably some phantom problems after the diagnosis!  But my doctor assurred me that W & W was appropriate, and also my hearing was better in my AN ear than my nonAN ear.  So, after a few months of freaking out about having an AN, I put all of those feelings aside, and I was content to W & W.  In fact I figured I was one of those who would never have any growth at all since it was found by accident in the first place.  Now I hear that it is quite common to find these things by accident, and I read these stories a lot on this forum.  So, when the AN grew this past year, and I started having some hearing loss (even though minor), I had to change my way of thinking.  Instead of saying, "Oh, I have this thing in my ear, but it's never going to do anything." to now saying, "This "thing" is now an AN (a reality), and it wants to do something."  Even though the growth was small, just the fact that it grew at all it makes it feel HUGE in my mind.

Now, I am at a decision point that is confusing me beyond belief.  On the one hand, my AN doctor (who has an excellent reputation) thinks I should go ahead and treat the AN now with GK while it is small.  The doc I went to for the second opinion recommended that I continue to W & W and have the follow-up MRI in a year.  However, he did agree that my AN is a canidate for GK (along with five other doctors), and he said if it is going to cause me psychological problems then go ahead with treatment.  My AN doctor hasn't pushed the GK, just his personal opinion, and he certainly agreed that W & W would be OK as well.  I compromised with a MRI in six months, and for a "little" while I thought that was a good decision I could live with.  But, I keep going back and forth, and I feel like I am going nutty, and I also worry about how this is affecting my bipolar disorder and issues with OCD.  I am a total control freak, and this AN stuff is "freaking" out my "control", if you will.  At this point, I think I need to get more information from my doctor.  I am adding to my list of questions daily.  Personally, I do feel confident with the GK procedure when it comes time so I think I have solved that issue.  Now, I am just trying to get past the psychological issues.  I have a consult set up with my psychiatrist to get a check on my mood which has been stable for quite awhile now.  I don't want to make an impulsive decision because this is a decision I will have to live with for the rest of my life.

Francesco,

I hear you when you say it might be a good idea to talk to someone personally vs. posting on this board, and I might be willing to do that at some point.  However, I would like to find someone who has a similar situation--small AN with only a few minor symptoms.  I got some names from ANA when I was first diagnosed, and I decided to contact someone to get the "scoop".  The person I talked to had a huge tumor (over 4 cm), and I really didn't feel like I could relate to her at all since she had no other choice except surgery.  She had a difficult recovery process, and to be quite honest, I was freaking out the whole time I was talking to her.  I actually went to my door and rang the doorbell so I could get off the phone.  I tore up the list and decided to go into denial mode instead. Francesco I have read your website, and I am totally impressed with how you have handled your AN.  You are an inspiration to all.  Maybe I will give you a call. 

Thanks for listening everyone.  I know the gut feeling will come sooner or later.  All of these ANs are different, and that is the frustrating part in deciding what to do.  Yes, mine is small, growing slowly, it is benign, it could be worse, etc., but it is still important to me.  Take care.

Nancy

[fbarbera]

Nancy, That is a major weakness of the Willing to Talk List.  I think the ANA really needs to work improve the list by giving the tumor size and treatment and date of treatment for persons on the list -- it is not particularly helpful without that information.  Send me a PM if you want to talk.  Regards, Francesco

[Dana]

Nancy,
I have an over-arching belief that, although we are "rational animals", we for the most part decide what we WANT to decide, and then justify it rationally.  Truth is, our 'quality of life' is our mental health.

I also believe that by a 100 years from now, 'telepathy' and 'gut instincts' will be totally accepted by the scientific community.

All that said, it's obvious that I think we do and should make our decisions based on our instincts combined with the knowledge we've gained.  Our psychological instinct is like the stove that cooks the pot that's full of all the information and experiences we've individually gained.

It sounds to me like you feel the need to make some decision, and that that unrest is uncomfortable for you.  All mental illnesses are different versions of "busy mind" and, oh, my, my, I know what that feels like.  I just have depression combined with a sharp mind, but I'm sure a bipolar 'busy mind' is even more aggravating.  That aggravation does not feel good.

Who knows, maybe you know something instinctively, that is driving you to do something now, rather than later?

I decided to do something right away, mostly because I had what-for-me-was-the preferred option of a radiation therapy (I had GK about 6 weeks after original diagnosis).  I'm not sure why I wanted to act right away, but I guess I felt (1) I knew that the AN was within the radiation size range, (2) my husband and I are retiring to Panama at some point, so I thought better to get the process going while I'm still in the US, (3) I'd now add that the necrosis process is slow, so better to start it early and preserve as many NON-SYMPTOMS (!) as possible.

I DEFINITELY made my radiation vs surgery decision on psychological bases, although I think they're very rational (!!).  Between my mom and my late husband, I've had more than the ordinary amount of experience with brain surgery, and it ain't for me.  Similarly, the "thought" of a dead AN in my head (a "mummy" I call it) doesn't bother me, whereas I can understand that for some folks, it's "get that thing out of my head."  Who knows where our various preferences comes from?

My thoughts....
Dana

[MAlegant]

Hi Nancy,
I empathize completely with you, though I am new to this game.  I was diagnosed July 8 and will have surgery on July 21.  My AN is 3cm, not small enough to watch and wait but small enough to wait longer than two weeks.  I just can't imagine waiting for a longer period of time.  I know I'm not alone when I say that having a brain tumor can cause some serious depression and anxiety, and that the only "relief" from that is getting through the surgery.  I'm not eating, can't concentrate, can't sleep, you know, all the usual stuff.  So, go with your gut instinct on this.  If you can live with waiting, fine, but if not, plan the surgery.  Now that I have a date some of my anxiety has decreased but I still bet I'll be shaking like a leaf on Tuesday!
Best wishes,
Marci

[Nancy Drew]

Hi Grace,

You posted while I was writing my last post.  While I was W & W I thought I had lost some hearing in my AN ear four months before I had my annual MRI.  Turns out I was correct.  I kept doubting myself thinking I was just imagining things.  I worry about continuing to think I am imagining stuff.  My doc had said to call right away if I noticed any hearing loss, and I put the phone down many times because I figured I'd get there and my hearing test would show no change, and I would look stupid.  Hearing in one frequency went from 20 to 35--bummer.

Nancy

[rosalie]

Nancy,
When I found out about my tumor and was told I could just "wait and watch" to see if it grows I was happy to think I didn't have to do anything. That lasted about 20 minutes. Then I started to realize that meant always knowing that the tumor could be growing. I took about a month to research the different options and decided on surgery. I came to my decision based on the fact that I'm going to have to deal with it eventually, and I'm in better health now than I will be if I wait several years. My doctors told me I could wait until my symptoms got worse. For me, I would rather treat it before they get worse rather than after. I'm not the type of person who can live with always wondering what my tumor is doing. So for me wait and watch wouldn't have worked. The decision making process was the hardest part. Once I made a treatment decision I finally felt at peace with myself.

Good luck on your decision,
Rosalie

[Esperanza]

I also believe that by a 100 years from now, 'telepathy' and 'gut instincts' will be totally accepted by the scientific community.

I am 'telepathically' willing my AN to 'die you b****r, die' on a very regular basis, not very scientific and it hasn't worked yet - but you never know  !!

x

[FlyersFan68]

I acted somewhat quick. I was comfortable with my team. I could have easily waited but due to my age at the time of only 34 I knew the day would eventually come to have this treated. If I was much older things may have been different. I was glad that mine was caught early because the longer these tumors grow the more they jeopardize the facial nerve. It was already taking my hearing so my facial function was the most important. There was certainly the psychological factor also influenced by age. My insurance at the time was the best ever. I didn't pay anything not even the co-pay. The co-pay thing makes me laugh. The hospital called me about 3 months following surgery wondering when I was going to pay. I told them that I was still recovering, recently back to work following "brain surgery" and didn't appreciate the aggressiveness. Never heard back. They made enough money from me anyway. Even though benign these tumors will grow because that's what tumors do. Benign tumors are slow growers compared to malignant ones. There is very little data showing the growth rates of these tumors in the young. There are far less young wait and watchers compared to the older folks. Even if mine remained dormant for years I had too many years ahead of me for it not to grow not to mention the worry.

[Sefra22]

When I was first diagnosed, I was told I could wait a few years for treatment if I wanted to.  I really couldn't come up with any logical reasons to wait. I have really good insurance at my job, but how was I to know if 5-10 years down the road I would still be working for the same company?  Also, I didn't want to risk it getting any bigger and causing more damage. My hearing loss was sudden and severe, so I was afraid that my facial nerve could be affected in the same way. I am really glad that it is all behind me now. (The treatment,anyway)
Lisa.

[Dana]

Actually, FlyersFan's post reminded me that I think another reason I went ahead and did GK quickly is that IF it had any side effects that had to heal, I was never going to be younger!  If anyone needs to have physical surgery, I'd definitely recommend doing it sooner rather than later.  Life has definitely showed me our healing abilities slowly decline as we age, so I figured the younger the better. 

BTW, FlyersFan, you get the award for most thorough statistician on the 'survery' thread.  Loved it!
Dana

[FlyersFan68]

Thanks for the award. I am honored of course. Just trying to keep it real (the survey). They conducted a survey right here a while back and never heard the results. Do you remember?? I guess those results are not real important anyway since it doesn't represent the entire community. Anyway, I hope you're doing well...we don't need anymore grief in out lives (Right)     Take Care

[Nancy Drew]

Hi Everyone,

Thanks for your reassuring posts about the psychological aspects of deciding when to have treatment.  As most of you know if you have read my past posts, I have bipolar disorder that has been under control for several years even through some difficult times like when my dad passed away in Oct. of last year.  This AN stuff has thrown me for a loop, and I have found that the psychological aspects of decision making to be very hard on my mood.  I just got back from my psych doc because I wanted to get his input on my mental functioning, and he gave me some interesting things to think about.  First of all, he applauded me for doing my research and for asking questions, and he reminded me that I have learned to manage my bipolar very well and coming in was a sign of taking care of my mental health so as not to backslide.  He listened and added some helpful comments, but in the end I came to the conclusion about what I need to do at this point.  I need to go see my AN doc and ask more questions before I make a decision that I can live with.  I think I need to get to the point where I don't continue to flip flop about my decision, and I am pretty sure that once I have gotten enough info that makes me feel comfortable in making a decision I will get my gut feeling about what to do.  And, I honestly believe that once I come to a conclusion about what my gut is telling me, I will stick with whatever decision I make.  I think I have a concern about the facial nerve as many have mentioned here (and my doc mentioned that as well), and I also know that at some point I will have to make a decision down the road.  I wasn't as young as you were FlyersFan when you found out (I was 46), but I have been told that I am still young enough for the AN to grow.  I am in excellent physcial health now, and I think perhaps it would be better now than down the road.  But, even still I know W & W is a valid option, but I have to get more info, and I might need to get one more opinion from a doc that I have heard is good here in Denver.

So, for now I am in the research mode, and I know I will get to my gut feeling soon.  The flip flopping is my problem.  I'll write more later, but in the meantime thanks for your stories and support.  All the best.

Nancy   

[leapyrtwins]

I think I need to get to the point where I don't continue to flip flop about my decision, and I am pretty sure that once I have gotten enough info that makes me feel comfortable in making a decision I will get my gut feeling about what to do.  And, I honestly believe that once I come to a conclusion about what my gut is telling me, I will stick with whatever decision I make. 

Nancy -

IMO, you have just found the key to your problem.  Best of luck in reaching this point - I think you are well on your way.

FlyersFan -

from now on when I have an issue with my insurance company, I'm letting you handle it     Great story about your co-pay; wish I'd thought of that 

Jan

[Nancy Drew]

So true, Jan.  I pretty much always stick to my decision once I have put the facts together and weighed the options.  I do the pros and cons list like a lot of people do.  Sometimes my nerdy engineer husband helps me with a spread sheet.  Gotta love him.  I have an appointment with the doctor I had wanted an opinion from in the first place.  It is on Aug. 6th.  They told me to be prepared to meet with him for an hour.  I haven't spent more than 15 minutes at a time with my AN doc so I feel relieved that I will have more time to ask questions (and, I'm going with a big list of questions).  If I feel more comfortable with this doc (Dr. Robert Feehs in Denver) then I might just go with his recommendation--GK or W & W.  Those are the two options I am considering at this point.  CaryF on this board had GK with Dr Feehs, and he has had good results, and he really felt comfortable with Dr. Feehs.  So that is where I stand for now.  I feel like a huge weight has been lifted off of my shoulder, and I know I can put the anxiety behind me for now.  And, Aug. 6th isn't that far away.  Maybe I will list my questions for the doc here and you guys can suggest some others that might be helpful.  You guys are the best.  Thanks.

Nancy