ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: Darlene on December 12, 2008, 05:47:47 pm

Title: How do you tell your family?
Post by: Darlene on December 12, 2008, 05:47:47 pm
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.
Title: Re: How do you tell your family?
Post by: Dog Lover on December 12, 2008, 06:03:43 pm
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
Title: Re: How do you tell your family?
Post by: leapyrtwins on December 12, 2008, 08:28:49 pm
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
Title: Re: How do you tell your family?
Post by: Jeanlea on December 12, 2008, 08:40:53 pm
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
Title: Re: How do you tell your family?
Post by: Keeping Up on December 12, 2008, 09:01:40 pm
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.
Title: Re: How do you tell your family?
Post by: NE Farmwife on December 12, 2008, 10:54:59 pm
 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.
Title: Re: How do you tell your family?
Post by: wendysig on December 13, 2008, 10:12:54 am
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,
Title: Re: How do you tell your family?
Post by: Jim Scott on December 13, 2008, 01:26:23 pm
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
Title: Re: How do you tell your family?
Post by: LisaP on December 13, 2008, 06:32:49 pm
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 ;D
Title: Re: How do you tell your family?
Post by: QRM on December 13, 2008, 07:12:26 pm
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.
Title: Re: How do you tell your family?
Post by: Dog Lover on December 13, 2008, 09:30:28 pm
Quote
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
Title: Re: How do you tell your family?
Post by: sgerrard on December 13, 2008, 09:49:51 pm
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
Title: Re: How do you tell your family?
Post by: Darlene on December 14, 2008, 01:51:54 am
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  :)
Title: Re: How do you tell your family?
Post by: QRM on December 14, 2008, 03:22:19 am
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?
Title: Re: How do you tell your family?
Post by: sgerrard on December 14, 2008, 03:23:25 am
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.

Quote
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
Title: Re: How do you tell your family?
Post by: leapyrtwins on December 14, 2008, 05:22:47 pm
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 treatmemt.


Usually the same goes for surgical removal of an AN.   Once it's removed chances of regrowth are generally 1-2%.

Jan
Title: Re: How do you tell your family?
Post by: Tisha on December 14, 2008, 06:32:10 pm
Darlene,

I found out 7 weeks about that I have a 1.6cm AN.  My kids are 15 and 12.  I basically told them I have a growth on my balancing nerve, which is pressing my hearing nerve and that's why I've had such a hard time hearing them lately.  They didn't seem too concerned because I was very matter of fact and no dramatic.  I haven't told them yet about the radiation I plan on doing, but will once everything is worked out.  They hear and DH and I discuss it.  I put on a brave face with them for their sake.  I went to pieces with DH and my parents when I first found out, but I 'm past that now.  I told my very very good friends and am now being to tell just "friends".  My Very good friends have listened to my fears and concerns and all the awful things that can happen.  My "friends" just get the "benign tumor, going to zap it with radiation, will you pass the wine bottle please" attitude. 

I do have a question for you since your AN is even smaller than mine.  If hearing preservation is a major concern, which it is very much for me as my other ear has a hearing aid in it already, why don't you consider cyberknife?  It seems you have that option, where others don't.  Almost 100% non-growth of tumor, almost no facial issues and 80% chance of hearing preservation.  There is so much information here to research.

I'm sorry you had to find this board like I did.  However, you couldn't have found anyplace on the web better for information, and the people here are the absolute best.  Good luck with your journey.

Tisha
Title: Re: How do you tell your family?
Post by: Darlene on December 16, 2008, 11:46:08 am
Thanks again for all the information.

 I am going to do more research on the Cyber knife.  I live in Northern New Jersey,  does anyone have any recommendations on NeuroSurgeons or places to get Cyber knife?   

I really appreciate all your help! 

Darlene
Title: Re: How do you tell your family?
Post by: Tisha on December 16, 2008, 03:07:39 pm
Darlene,

Go to cyberknife.com.  It's a cyberknife information web, with a message forum for patients.  2 doctors give their time to answer questions.  I also believe there is a list, by state, of cyberknife centers.  I do think it's worth your while to investigate this option further.  Good luck!

Tisha
Title: Re: How do you tell your family?
Post by: Darlene on January 03, 2009, 11:20:08 pm
Just a follow up, I told my family in the method I was advised and it worked beautifully.  My kids know but I was so matter a fact about it that I think they are taking it in stride.  Besides asking if it meant I was going to die,(which I reassured them I was not) my hearing difficulties are an ongoing joke for our family.  Even my mom and sisters have been able to be calm and collected about it. 

Thank you all very much!!!  Often, when I am stressed out I say the totally wrong thing and your experience and thoughtfullness was exactly what I needed to handle this without overly upsetting my family. 

greatly appreciative,
Darlene

ps.  One benefit of my new diagnosis is that now my 15 yr old son willing turns off his"loud rock" radio station while I am driving  him and his friends around!  No more sullen faces- just compliance!   A blessing but probably not worth having an AN to obtain.   LOL :D
Title: Re: How do you tell your family?
Post by: lori67 on January 03, 2009, 11:39:59 pm
Darlene,

I'm glad the breaking of the news went well.  I tend to approach things like that very matter of factly too.  I've found that as long as I'm not freaking out about it, my family won't either - especially my kids.

I'm coming up on my 2 year anniversary of my surgery next month, and just the other day, my sister yelled at me for being so calm when I told her.  She's a worrier anyway, so she worried enough even after I downplayed the whole thing.  She said she's heard people more emotional about having to go in to have their teeth cleaned.  I really didn't want my mom to worry, so the whole family had to be matter of fact when speaking to her.  It wasn't until afterwards when she saw pictures of my stapled together head and my droopy face that she said "Oh, I didn't know your surgery was so involved!".  Well, yeah a bit involved - considering it was my head!!

I'm sorry you couldn't have found an easier way to get your son to turn down the music!  I guess you do whatever it takes!   :D

And I'm from Northern Jersey originally too!  I was feeling quite homesick a few weeks ago, even though I haven't lived there since 1991, but then I heard how much snow you guys got and I got over my homesickness quickly!   :D

Lori
Title: Re: How do you tell your family?
Post by: Kaybo on January 03, 2009, 11:58:58 pm
Lori~
From what you have said, it was probably YOU who was more emotional about going to the dentist... ;D

K
Title: Re: How do you tell your family?
Post by: lori67 on January 04, 2009, 11:05:03 am
Kay, you are absolutely right!  At least I got to sleep through the brain surgery!  I might look kinda wimpy if I ask for general anaesthesia to have my teeth cleaned!   ;D

Lori
Title: Re: How do you tell your family?
Post by: mimoore on January 04, 2009, 02:54:42 pm
When is the size of the tumour a factor in radiation? CK is good for tumours up to ?
Michelle  ;D
Title: Re: How do you tell your family?
Post by: sgerrard on January 04, 2009, 03:42:45 pm
When is the size of the tumour a factor in radiation? CK is good for tumours up to ?

(waving hand) Oh, call on me!  ;D

I think in most cases, below 2 cm is considered fine, and above 3 cm it is usually not considered. Between 2 cm and 3 cm the debate is on, and it depends very much on location, how close the AN is to the brain stem, and whether it is pressing into the brain stem. The issues are what the effect of swelling would be during the 12 months following treatment, and whether there is risk of excess radiation hitting the brain stem.

Do I get a gold star?

Steve
Title: Re: How do you tell your family?
Post by: mimoore on January 04, 2009, 06:27:38 pm
Thanks Steve,

I asked because I live in Canada and worked hard (10 yrs) to get a diagnosis for my symptoms. There is quite a process here... you need a referal to a specialist (I saw four different specialist and finally got an MRI) and the wait is, at times very long. Getting a second opinion is often challenging and lengthy. There are many benefits to our health care system but some negatives as well.

So to make a long story short, it is not easy to get second or third opinions.
I went from a neurosurgeon who said "That white blob is a tumour and it needs to be removed" right to a neurosurgeon whom I felt comfortable. I felt a strong pull to have it "removed" instead of radiation. That was that booked and in a month had surgery. Yes I did my research but did not get another opinion.. I hear the gasp from some of you. I should tell you that I did not know if  it was an acoustic neuroma or a mengioma and did not find this site until after my surgery when they did tell me it was a VS.

Then when I read stories of others who have had radiation and things are successful I question my choice of surgery. Did I do the right thing? What if I would have gone to the States? Or tried GK or CK?

I know that what's done is done and many people have surgery without complications and I am doing so well now so why question. If I could go back would I chose surgery again...yes I know I would but still the questions are there.

Does that make any sense?
Michelle  ;D
Title: Re: How do you tell your family?
Post by: leapyrtwins on January 04, 2009, 06:27:56 pm
Steve -

since Phyl isn't currently around, I'll hand you the gold star  ;D

From my experience, your answer is absolutely correct.  Well done!

Darlene -

I'm glad to hear that the breaking of "the news" to your family went well.  As others have said, children usually take your lead on things.  If you aren't freaked out, they usually aren't either. 

Once I told my children that I wouldn't die, they just went about their lives as if everything was perfectly normal.  In fact, to this day, they still don't see what the big deal is about brain surgery  :P  In a way I'm thankful for that, because it means this wasn't as traumatic an event in their lives as I anticipated.

Jan
Title: Re: How do you tell your family?
Post by: lori67 on January 04, 2009, 07:12:02 pm
Michelle,

Yeah, it made sense after the second time I read it!   :D

You're a smart lady and you should just trust that you did the right thing.  I'm sure we could all second guess many things in our lives, but it wouldn't change what's already done.  There's no way to know if radiation would have been effective and without complications in your case, just as there were no real guarantees with surgery.   If it makes you feel any better, I didn't get a second opinion either.(more gasps from the peanut gallery! ). I had complete trust in my primary doctor who diagnosed me and complete trust in the surgeon he recommended to do the surgery.  He gave me all of the info I needed on all of my options and did not seem to be pushing for one or the other, so I felt I had enough information to make a decision.

Jan, the older kids are funny, aren't they.  My son, who is the worrier in the family to begin with, said "Only you would be sitting there having your head cut open and still worry about us going out with clothes that don't match or socks that aren't clean!".  Apparently he wasn't too traumatized by the whole thing either.

Lori
Title: Re: How do you tell your family?
Post by: QRM on January 04, 2009, 08:28:05 pm
Its not just the size I found out that my spud was also cystic, which means its not all solid and has area of goo within. There is an on going debate, Yeap another one, on the increase chances of facial paralysis due to a cystic tumour, the jury is still out on whether or not it makes a difference to the surgical outcome.
Title: Re: How do you tell your family?
Post by: leapyrtwins on January 04, 2009, 09:46:03 pm
Michelle -

like Lori - and you - I only had one opinion also - third gasp!!!  :o

My ENT referred me to my neurotologist and I knew right away that he was the "one for me" - so to speak.  Although I had a difficult time deciding between surgery and radiation, once I chose surgery I didn't second guess myself - I figured it was pointless.

Like Lori said, there are no guarantees with either radiation or surgery; you are a smart lady; and you should trust that you did the right thing.  Life is full of question marks and regrets.  You do what you think is right at the time, and as Lori also said, you can't change what's already been done. 

Lori -

it's amazing the things that you think will traumatize your kids, and then find out later no impression was made on them.  Last year I felt just horrible because despite my weekly promise throughout the month of December to buy a Christmas tree I just never got around to it.  I thought I was a terrible parent; that my kids were scarred for life.

This year I told my kids that because we had no tree last year I was definitely buying one this Christmas.  They both said "we didn't have a tree last year???"  At that point, I stopped feeling horrible  :D  Despite the same promise this December, I never did get around to buying a tree; so after Christmas I took my kids' advice and bought a fake one; guess I'll have no excuse for Christmas of 2009  ;D

Jan

Title: Re: How do you tell your family?
Post by: Kaybo on January 04, 2009, 09:58:37 pm
OK - I only had ONE opinion also and not only that, I was scheduled for surgery ONE WEEK after the intial meeting.  I didn't even know that there would be a neurosurgeon...I met him bright & early the morning of my surgery!!   ;D

I think that we have to live in the present...I was always taught to be happy where you are or you never have any peace or joy.  That doesn't mean that we can't set goals to work for, but that we are CONTENT where we are while we are getting there.  Same thing with looking back and "what ifs"...we can/could absolutely drive ourselves mad (much less NEVER know any peace or contentment) if we are always wondering what would have happened if we would have just done _____ differently. 

K   ;D
Title: Re: How do you tell your family?
Post by: JerseyGirl2 on January 04, 2009, 10:18:00 pm
I'll contribute to yet another gasp -- I just had one opinion (at the time of my diagnosis by the only otolaryngologist I saw), plus I had made up my mind as to where I was going for treatment before I even left his office that day and, obviously, before I had even spoken to anyone at that place! I did go home and check out the website, sent them my MRI a few days later, and set up a surgery appointment while talking with the surgeon on the phone when he called me for the "free consultation."

I knew that I wanted surgery rather than radiation and also that trying to save my hearing (which was virtually gone) was not an option. Those two factors certainly simplified the decision-making process! I was comfortable with my decision at the time, and, one year later, have never regretted it.

Catherine (JerseyGirl2)
Title: Re: How do you tell your family?
Post by: Jim Scott on January 05, 2009, 04:41:58 pm
Hi:

Me again.  :)

I did have a second opinion because the first doctor I consulted seemed indifferent to me as a patient and somewhat intimidated by the size of my tumor.  I quickly decided on that 'second' neurosurgeon, as he came highly recommended and impressed me (and my wife, who accompanied me on my consultation) with his serious attention to my concerns and his complete understanding of my case.  I had made the appointment 24 hours earlier (he made time for me) and this busy neurosurgeon must have studied my MRI and medical history the night before.  He presented me with a plan (tumor de-bulking surgery, then radiation) and kept using the phrase "if you decide to hire me" which was unusually deferential and showed a humility rare in surgeons of his caliber.  I immediately decided on this doctor - and he more than met my expectations.  A successful surgery with no real complications, uneventful FSR treatments and fairly rapid results; an immediate cessation of symptoms and, at 6 months, necrosis that has continued with every MRI.  On my last check-up, this doctor stated that I had met all of 'our' goals.  I agreed.  Obviously, I don't have any regrets over my decision but I realize it could have ended much differently.

I've long realized that life is made up of risks.  I've taken a few, as we all do.  Most have worked out well (my marriage, for instance) a few were disasters and many just had 'O.K'. results.  My decisions related to my AN were constrained by it's large size but my choice of surgeon, was, on hindsight, excellent.   I 'went with my gut' on that one (well, my wife's gut, too, as she wholeheartedly agreed with my decision, for the same reasons).  Would I have regrets if things hadn't worked out so well?  Probably - but not for long.  Forgive me for stating the obvious but we can't change the past and agonizing over decisions we've made that seemed logical at the time but didn't work out as well as we would have liked is futile, and I don't go down that road very often or for very long as it's totally unproductive.  I deal with the reality of what is, not 'what might have' been because 'what might have been' never really was.  Ambiguous?  Maybe, but it makes sense to me.  :)

Jim
Title: Re: How do you tell your family?
Post by: leapyrtwins on January 05, 2009, 06:14:06 pm
Jim -

glad marriage is working out for you - in my case, it was mostly a disaster  ::) LOL

All kidding aside, IMO there's a lot to be said for "going with your gut" which is probably why I never felt the need for more than one consult.  And it's nice to know that others on the forum only had one opinion before making their choice - I've read so many posts here about numerous opinions that I've often felt that I was "alone".

I've also felt a little "different" than the average forumite because I made my treatment decision relatively quickly and had my surgery in record time (about 6 weeks post diagnosis) - but that was before I found out about Kay and Catherine.  (HUGE gasp, here!!!)

It's always interesting to me to read the different stories about choosing treatment and choosing doctors. 

I was almost like Kay.  The only reason I met my neurosurgeon prior to my surgery was because my neurotologist told me I should.  As he pointed out, I would be a patient of both of theirs.  My thought was, if the neurosurgeon was good enough for my neurotologist, he was good enough for me - afterall, all I had to do was sleep through the surgery.   But I did as I was told (yes, unusual for me, I know)  ;) and I was glad I did.

Jan

Title: Re: How do you tell your family?
Post by: JerseyGirl2 on January 05, 2009, 09:24:55 pm
I should say that while I reached my surgery decision in about a nano-second after my diagnosis, I didn't actually have the surgery until six months later! My local doctor and Dr. House both assured me that it would be fine to wait a while and since my only symptom was decreased hearing I didn't feel any particular urgency. My husband and I needed time to clear our calendars, and January seemed like a good time to be in southern CA rather than the Northeast, so that's how I picked the date. I was able to keep my mind pretty well occupied with other things until about a month before surgery, so that worked out fine. I'm sure that if I had been experiencing other symptoms I would have signed up for an earlier surgery date. And as I mentioned in the previous post, since I knew without any doubt whatsoever that I preferred surgery to radiation (though I certainly understand why many prefer radiation) and that translab was going to be the procedure due to the extent of my hearing loss, a lot of the decision-making process was already taken care of.

Catherine (JerseyGirl2)
Title: Re: How do you tell your family?
Post by: lori67 on January 05, 2009, 10:06:33 pm
Jan,

 6 weeks from diagnosis to surgery for me too!  It would have been 5 weeks, but my doctor's wife apparently felt strongly about him being present at the birth of their child, so I gave him the week off with the understanding that he not have to do the 2am feeding the night before my surgery.  I wanted him well rested.   :)

Lori
Title: Re: How do you tell your family?
Post by: leapyrtwins on January 05, 2009, 11:00:33 pm
Lori -

the more I read your posts, the more I'm convince we are twins separated at birth  ;)  :D

Okay, it's probably about time for Phyl to remind us to get back on topic, so I'll save her the time and effort and say "sorry for the hijack".

Now, back to "How do you tell your family?"  ;D 

Jan
Title: Re: How do you tell your family?
Post by: sgerrard on January 05, 2009, 11:36:08 pm
Then when I read stories of others who have had radiation and things are successful I question my choice of surgery. Did I do the right thing? What if I would have gone to the States? Or tried GK or CK?

Michelle, if it is any consolation, I think you would have been considered borderline for radiation anyway. 2.5 cm is big enough to be a concern, and I especially think they are wary of tumors that might not be ANs. As I understand it, meningiomas are less responsive to radiation, so the uncertainty about what it was would have raised a flag. In the end, it is a roll of the dice no matter how you go.

Now, back to "How do you tell your family?"  ;D 

Jan, I think Darlene reported that she already did that about reply #19. :)

As long as we are discussing one consultation versus several, or having confidence in the choice you have made, or how we made our decisions, the discussion is relevant to Pre-Treatment Options, even if it drifts from how to tell the kids specifically. It is the chocolate and wine hijacks that are more of an issue.

So I think we're okay, unless Phyl says otherwise, in which case she's right.  ;)

Steve
Title: Re: How do you tell your family?
Post by: mimoore on January 06, 2009, 06:30:04 am
Great advice. Not only for me but for others who may have felt the same.
This is me moving forward and feeling great today! It's early ask me later how I feel after a full day of kindergarten and (hey two days ago was 7 months...too busy to remember). Life is GREAT!
Have a wonderful day my very supportive friends. Honestly I don't know how I would have done this without my loving family and friends and all of you!!!!!
Thanks for always being there!
Michelle  ;D
No whining today!  ::)
Title: Re: How do you tell your family?
Post by: lori67 on January 06, 2009, 11:53:55 am
Well, I chose to tell my family by plying them with chocolate and a glass of wine first.   :D

Oh wait, maybe the chocolate and wine was for me - not them....

We now return you to your regularly scheduled program..

Lori
Title: Re: How do you tell your family?
Post by: Jim Scott on January 06, 2009, 02:19:57 pm
Quote
Jim -
glad marriage is working out for you - in my case, it was mostly a disaster  ::) LOL

Jan:

I'm truly sorry about that.  Frankly, I feel very blessed to have had a stable and happy marriage for close to four decades.  I give my wife the credit for putting up with me that long. ;)

Quote
All kidding aside, IMO there's a lot to be said for "going with your gut" which is probably why I never felt the need for more than one consult.  And it's nice to know that others on the forum only had one opinion before making their choice - I've read so many posts here about numerous opinions that I've often felt that I was "alone".

Well, the first 'opinion' I received was from a young neurosurgeon who (reluctantly) admitted "he hadn't seen many of these" (acoustic neuromas) and wanted to 'consult' with other doctors before taking my case.   You can imagine how quickly we thanked him for his time and headed for the exit.  I later called his office to say "never mind" and they acted as if I had insulted them.  Go figure.  Based on that unhappy and unproductive experience, I consider Dr. Goodrich - the neurosurgeon who performed my retro surgery and co-supervised my FSR treatment (with a radiation oncologist) - as my only 'real' consultation. 

Quote
I've also felt a little "different" than the average forumite because I made my treatment decision relatively quickly and had my surgery in record time (about 6 weeks post diagnosis) - but that was before I found out about Kay and Catherine.  (HUGE gasp, here!!!)

I didn't know it was a contest - but I'll play!  :)  Actually, I received my AN diagnosis (via telephone) in mid May (2006) and had my surgery on June 7th....about three weeks later.  It would have been sooner (the tumor was pressing hard on my brainstem and my doctor was very concerned at that point) but a false alarm that indicated I might have liver cancer postponed the surgery for about 10 days. A biopsy showed that I didn't have cancer.  Had that not occurred, I would have had my surgery within 2 weeks of my diagnosis instead of 3. 

Now, what did I win?  ;)

Jim
Title: Re: How do you tell your family?
Post by: Darlene on January 06, 2009, 07:26:07 pm
This discussioin has been incredibly valuable from learning that the kids are resilient and will survive this whole thing (thanks Jan and Lori) to learning that radiation is sometimes considered questionable in tumors 2c.-3cm (Gold Star for Steve) .   But most of all breathing a big sigh of relief to learn that everyone ( for a variety of reasons) didn't necessarily follow the due diligence that may have been expected and are content with their decisions.  I have been incredibly stressed that I am not doing enough research and that my lack of doing my homework will result in getting an F otherwise known as a bad outcome.  I have yet to feel in my gut exactly what is the right thing for me, but hearing other peoples experience has really helped me to relax and feel better that there is no wrong answer or decison.  As I read through the threads throughout the forum I have heard that idea repeatedly but for some reason this time with this thread it really hit home!! 

In life I have often found it is not the answer to the question but the discussion that has the real relevance for me. 

Thanks to you all,
Darlene 
Title: Re: How do you tell your family?
Post by: leapyrtwins on January 06, 2009, 09:12:41 pm
Jim -

I didn't really realize it was a contest until you pointed it out - but yes, you definitely win.

The prize  ???  Hmm, I'm in charge of prizes for pictures/photos; Steve is in charge of prizes for contests like shortest time between diagnosis and treatment.  So, please contact Steve about your prize.  A word of caution though, if he promises you a knit hat, don't fall for it - I'm still waiting for mine  ;)

Darlene -

while Steve had the correct answer about tumor size and radiation, I knew that answer also.  I just didn't mention it because I figured you already knew that.  So I'm filing an object to his gold star on the grounds that the rest of us didn't get to prove we knew the answer also  :D

Lori -

did Steve just basically say we can post about anything even semi-related to a topic as long as we don't mention chocolate or wine?  I thought Phyl's rule was you needed to stick to the topic listed in the subject line and I was preparing myself for her slap on the hand and trying to apologize ahead of time for diverting the topic and now I find out it wasn't necessary at all.  So much for CYA - or would that be CMA  ???

Jan
Title: Re: How do you tell your family?
Post by: Kaybo on January 06, 2009, 09:19:13 pm
HELLO...mine was ONE week...I don't know of anyone who can beat that but satman and if he knew it was a contest, I bet he just passed out so he could win...

 ;D   ;D   ;D   ;D

K
Title: Re: How do you tell your family?
Post by: leapyrtwins on January 06, 2009, 09:28:40 pm
Talk to the chairman of that prize category - Steve  :D

Jan
Title: Re: How do you tell your family?
Post by: Jeanlea on January 06, 2009, 09:45:39 pm
I'm happy to see these posts.  I've always felt a little guilty for not doing more research into other surgeons.  I was given the news from my local ENT, sent to another ENT specialist that he recommened two days later and had surgery four weeks after that.  I had faith in the doctors that I met.  Guess I don't beat Kay for treatment time though.  :-)

Kaye, I have to tell you that I really admire your outlook on life.  I also believe that it's important to be content where you are.  Sometimes I have to remind myself of that fact. 

Jean
Title: Re: How do you tell your family?
Post by: Kaybo on January 06, 2009, 10:01:55 pm
Jean~
You are sweet, thanks.  I have to remind myself onten too!!

I always tell my girls that (especially the older one) - it was really drilled into my head at church as a young girl/teen about how if your always thinking, "if I can just date, I'll be happy" or "if I can just drive" or "I can't wait to be 21, then I'll be happy" then you miss out on all the wonderful things that are happening where you are right then!

K
Title: Re: How do you tell your family?
Post by: Darlene on January 07, 2009, 04:11:14 pm
Ok!

Gold Stars for everybody! ** -- For your wealth of knowledge but mostly for being there for all us newbies.


Thanks
Darlene

Title: Re: How do you tell your family?
Post by: leapyrtwins on January 08, 2009, 09:12:09 pm
Can we get some gold stars for our humor, too?  :D  ;D

Jan