How do you tell your family?

[Darlene]

Hi
I just found out last week from Ent that MRI showed Acoustic neuroma at least 1.4 cm in size..   I am seeing a Dr. Kaptain (recommended by ent) on Dec. 22.  I told my husband and he had a tough time, but have decided to wait till after the holidays to tell my 4 kids and the rest of my family.  Any advice on what and how to tell.  My kids are 9, 11, 13, and 15.   I don't want to scare them  but I believe in being as truthful as possible. 

Also I read in literature that with sizes less than 1.5cm a media fossa incision is possible.  My hearing is ok,  a little loss is what brought me to ent.  I don't want to lose any more.  Does anyone know if that is truly common practice for my size AN?

I have to say this doesn't seem real, and saying the words out loud really hurts.

[Dog Lover]

Hi Darlene,

I can't give you any advice on how to tell your kids, as mine were all adults when I was diagnosed. I would image that simple, plain an honest, but not in too much detail. I was always under the impression that they will ask questions that they are ready for the answers for. Heck - as hard as it may be for you, I'd wait until after Christmas. Why not let them enjoy the holidays without having to worry about mom, you know? JMO, though.

My AN was 9mm, and I had a mid fossa. From my understanding it is a good choice for smaller ANs with a relatively high success rate of saving your hearing. Although a LOT depends on the surgeon that does the surgery. There are no guarantees with surgery, as I'm sure you're aware, but it's best to stack the odds in your favor. Select a surgeon who you are comfortable with and who has a lot of experience in doing the specific AN surgery that you are getting.

I would also recommend getting opinions from more than one doctor. I don't know where you are located, but if in the US there are several very experienced AN surgeons. In the mid-west there is Dr. Bruce Gantz at the University of IA Hospitals and Clinics. Very experienced AN surgeon who does 2-4 AN surgeries a week (that's where I went). Also the House Institute in LA is like the top of the top where AN's are concerned.

Good luck. I'm sure you'll get a lot of responses. And you're welcomed to PM me if you'd like.

Cathy

[leapyrtwins]

Darlene -

as shocking as it is to relate a diagnosis of acoustic neuroma, I found it was important to stress to others that 99.9% of ANs are non-cancerous.  That statement alone usually creates a lot of relief.

ANs aren't generally fatal and the treatment of them - yes, even surgery - generally isn't fatal.  The main thing to stress to your family is that you WILL BE all right.

With your size AN mid-fossa should be an option, but radiation should also be an option.  Have you looked into it?  Just curious, as some find it's the best option for them.

If you haven't already thought of it, you might want to contact the ANA and ask them for their informational literature.  I found it to be very helpful; especially post diagnosis when emotions are high and you're still reeling from the news.

Good luck and remember we're all here for you,

Jan

[Jeanlea]

Darlene,

When I was diagnosed my children were 17, 15, and 12.  My ENT called me with the news one afternoon.  He explained that I had a benign brain tumor called an acoustic neuroma.  I have to say that hearing the word benign first was SO helpful.  I think I was sort of overwhelmed by the news.  At the time of the phone call the only one home with me was my 12 year old son.  Right after I hung up the phone I blurted out to him that I had a benign brain tumor.  I didn't act upset so he didn't get upset either.  Sort of took it in stride.  I told my older children the same day.  They had similar reactions.  My husband was into researching it along with me.
Each person is different and you know your children best.  Whatever feels right to you will be best for your family.

Good luck in your research.

Jean

[Keeping Up]

My husband knew about the possibility long before the appointment with the doctor.  OK, a lot of people knew as I had missed a party and a bit of work here and there. 

I wrote my family (parents and siblings an email) which basically said 'great news, I have a benign brain tumor!'  Despite me thinking I had explained it to them (ad nauseum), they still flipped out.

I am not telling my little ones (6, 4, 2 and 1) for obvious reasons - especially since I am going to watch and wait.  I would tell them about upcoming surgery as that would affect their lives - but that mightn't happen for several years in my case.

[NE Farmwife]

 I found out a month ago that I had an acoustic neuroma. My kids are 26, 24, 21 and 17. When I first told them, all I said was that I had a tumor on the hearing nerve and it was in the middle of my head--kind of a hard place to get to. This is what I thought it was myself, but I have learned that it is actually on the vestibular (balance) nerve. I didn't even mention "brain tumor" to any of them.  I told them that it was benign and at that time I had only been told that I needed surgery and was being sent to see doctors in a bigger city to talk to them about it.  Within a few days, I knew that there were other options (mostly from this website) and gradually as they heard my husband and I talk about it, they came to realize it was a "brain tumor".  I explained to them that officially it is called a brain tumor but that it wasn't in the actual brain matter, it was on the outside of the brain on a nerve and I tried not to make a big deal about it being a "brain tumor".  I also talked about it pretty lightly so they didn't think that I was too shook about it.  When they were all home for Thanksgiving, I would say things jokingly like "be careful of the old lady with the brain tumor" and make light of it. I just look at it as something I have to get through and from all the information I have gathered, acoustic neuromas are not life threatening unless you don't monitor it or don't have surgery or microsurgery.  My 17 year old still lives at home so he is aware of all that is going on and he has heard us talking about my options. 

I always emphasize when I tell people about it that even though it is actually classified as a "brain tumor", it is actually outside the brain area, reasurring them that I am really alright.  I always add that I do not feel ill and if I hadn't been told that I have a "brain turmor", I wouldn't know that I had it.  I don't have any balance problems, headaches or nausea like some of the people on this forum do.  I do have hearing loss and my lower face is numb.  With my mom, I approached the subject by telling her that I finally found out why I was losing the hearing in one ear.  Also when I told my mom and mother-in-law about it, I printed off some of the basic information about acoustic neuromas from the internet and gave that to them to read after I left.  That way they could get more of the details that I didn't go over with them and of course at that time, I didn't have too many details myself. I don't tell too many people. It always seems soooo weird to have a conversation about my "brain tumor".  I do try to keep my family up to date though on what we learn, what the doctors have said and where we are in discussing our treatment options.  Hope that helps.

[wendysig]

Hi Darlene,
Welcome to our group but sorry you need to be here.  I can certainly understand your reluctance to tell you children and the rest of your family about your AN, but they will undoubtedly sense there is something wrong so it is best to just tell them.  I have a very large extended family and decided to tell my brothers and sisters by writing to them and having them spread the word to their children.  I found this issue just too much to go over and over with each person individually. 

As for my children, they are now 14 and 12.  After giving myself a few days to process this information myself, I just sat them down and told them I had a tumor in mr inner ear, it is NOT  cancer (they are pretty savvy and I wanted to put that idea to rest immediately), and I will be okay.    My 12 year old's biggest concern was that I might die.  Once she felt reassured on that count, she asked a few questions which I answered very honestly.  I could tell she was still a little worried but encouraged her to ask any questions she had.  My doc and I exchanged e-mails and sometimes I let her read them.  My 14 year old was much better at accepting the fact that everything would be okay.  She didn't want  too many details.  For her, knowing that I would be okay in the end was all the reassurance she really needed.  I'm pretty good at reading her, so when I sensed she was worried about me,  I would bring it up and talk to her.  They were both a huge help to me in the hospital, walking around the floor with me and after I came home, they really enjoyed playing caretaker and I enjoyed letting them.  My advice is to be honest with your children, give them the information you think they can handle and be open to answering their questions -- they will have them.

Best wishes,
Wendy,

[Jim Scott]

Hi, Darlene - and welcome ~

Our only child was an adult of 27 when I received my AN diagnosis so we didn't have to shield him from the truth or play word games.  However, with children 9, 11, 13 and 15, it's a slightly different story.  Because your children are no longer toddlers, they can be told the truth, but I wouldn't get too technical.  I have always found that, when breaking anything negative to children, even teenagers, how you act is critical, as they tend to take their cues from you.  If your voice is shaking and you break into tears while telling them what you have and what you're going to do about it, they'll assume this is really baaaaad and that you'll probably die but don't want to tell them.  I recall that most teenagers think they know everything anyway, and trying to keep them 'out of the loop' insults them ("I'm not a baby!")  Of course, kids, like adults are individuals and, as their mother, you'll probably know, by instinct and experience, who can be told what. Still, I would wait until after Christmas and when you do break the news, empasize that the tumor is benign and treatable.  With the odds of dying during the surgery being infinitesimal, you can safely state that you aren't going to die from this and if anxiety arises over your 'brain tumor' (and to avoid misunderstandings) you can accurately state that the tumor is in your skull, not your brain and you aren't actually having brain surgery but skull surgery.  Yes, it's almost a matter of semantics, but the term 'brain surgery' seems to generate assumptions of your imminent death or at least, being in a vegetative state after the surgery, which is wildly inaccurate. 

In short, be as honest and factual as you can and do not get overly emotional and/or cry while explaining this to your children.  Easy for me to say, I know, but still important.  Good luck with this. 

Jim

[LisaP]

Hi Darlene,

I'm a newbie also, found out in March of 08, I'm on the watch and wait.   My advise to you is to be honest with your family.   When I found out, my husband and kids of course were in shock as well as myself.  The only members in my family who don't know is my mom and dad because when I found out my dx, I had a brother who was fighting a CA brain tumor.  He died this past October.  I will tell my parents when I have to because they are frail and eldely and could not handle the news.  But my husband and children know.  They are also grown, 26, 26, and 19 so being adults it was a little easier.  Take care and keep in touch.


LisaP

[QRM]

Its amazing the difference in reactions, when you say "I have a brain tumour," everyone suddenly panics ,  but if you say I have a non cancerous growth in my middle ear that needs removing, everyone just shrugs their shoulders and say they will meet for lunch after the surgery.

[Dog Lover]

Its amazing the difference in reactions, when you say "I have a brain tumour," everyone suddenly panics ,  but if you say I have a non cancerous growth in my middle ear that needs removing, everyone just shrugs their shoulders and say they will meet for lunch after the surgery.

Because they all assume that the dr will go in through your ear to remove it.

Cathy

[sgerrard]

Because they all assume that the dr will go in through your ear to remove it.

That's what I thought they meant when they first told me I had a little tumor and they could pluck it out with surgery! Little did I know...

Steve

[Darlene]

Wow, Thank you very much, I feel much better about my diagnosis just from all your words of reassurance, now I feel like I have a sensible plan to tell my kids and family.  It is strange but my memory, focus and processing are terrible right now.  I try to act like nothing is wrong and I guess it is causing me stess.   

It was all  great advice!  A small growth in my ear that they have to remove through my skull and eventually state that it is called a brain tumor ( but it is really in the skull, not the brain) .  I will definetly reassure them (and myself) that I won't die from this and let them know then can ask plenty of questions.   Letting others know by writing works for me too, saying it to someone, stinks.   I am going to wait till after the holidays.   

I constantly go around and around in my head  about the different options, I guess I have to hear from the Neuro Surgeon exactly where it is located and what the impact will be for each option.    I thought I read somewhere that with radiation you eventually have to have it removed anyway?   Can anyone tell me is it a good idea to contact your health insurance to let them know?  Except for going to the surgeon to hear what he has to say, I haven't thought what else I need to do.   Any advice is appreciated. 

Thank you all for your help and reassurance, I find it hard to believe but I actually do feel much better knowing you guys are out there to help.

Take care,
Darlene 

[QRM]

And dont forget to give it a name, people here call it boogie, unwanted friend, stowaway, I call it my spud, and my 2.5 year all says papa has a potoato stuck in his head.

and on a slightly different subject where can I get a coffee mug that has " I have a brain tumour, so whats your excuse ?" printed on it?

[sgerrard]

I thought I read somewhere that with radiation you eventually have to have it removed anyway?   

Usually not. Only about 2% regrow and require surgery, depending a little on which kind of radiation treatment.

Can anyone tell me is it a good idea to contact your health insurance to let them know?

I found it useful to call the insurance company and find out the name of the person who would manage my case there, since it is major medical. For me it was a registered nurse on their staff, not the person answering the phone. Establishing contact helped when making sure reports got sent from doctors to the insurance company. I would not ask them for approval of a procedure yourself, though. They need to receive the official diagnosis and treatment plan, with codes, from the doctor, before they can say anything about approval.

And welcome to the forum, Darlene. We are indeed out here to help, and before you know it, you will be one of us, helping the next newbie to come along.

Steve