New to the group

[Sonia]

Hello,

     I was diagnosed with AN in July. I am a 4 year breast cancer survivor. This tumor has been very difficult for me and I am driving my family crazy with my mood swings. I have seen several neurosurgeons in FL and I have made an apt for Radio surgery in November at Shands Hospital. However, I am not at peace with this decision? With my cancer I also saw a couple of doctors too. I choose a team of doctors and I was a peace the decision. I felt like I was awaiting Christmas when I was going into surgery. After 8 hours of surgery I woke up smiling (praise God!) The process of re-construction was not easy but I took it like a trooper and smiled.
   
     But this time around I am very resistant? Not sure why?I have made the appointment because I HAVE TOO but not that I want too? I already have hearing loss, ringing in ears, vertigo and many other issues. I know I need to do something?  Waiting is not a good option. My tumor is almost 2 cm. I have had it for 7 yrs and no one ever caught it on the MRI? Now that it is big everyone saw it? Go figure?
     Maybe I am still angry? I do know? I know things could be worse (like everyone say) but I can't help but feel resistant to this whole process.

Sorry so long. But I needed to vent to people who truly understand what I am going through.

[lori67]

Hi Sonia.

No need to apologize for venting - that's what we're here for!     I'm so sorry that you have yet another thing to deal with.  Seems like after you've battled and beat cancer, you shouldn't have to deal with anything else, but I guess it doesn't work that way.

I've never dealt with breast cancer personally, but unfortunately, I've had many friends and family members who have.  I can say, from my perspective, battling cancer is much more difficult than dealing with an AN.  Yes, it's scary and I can certainly understand your reluctance to have to deal with doctors and surgery.  I don't blame you!  And I don't blame you for being angry either.  It's easy for people to say "it could be worse", but they haven't walked in your shoes.

I would suggest you seek a few more opinions before making your final treatment decision.  You need to feel at peace with this decision.  I know when I met with my surgeon, I knew that he was the right man for the job and I felt completely at peace.  You deserve to feel that way too.  It's a big decision and you need to feel comfortable with it.  Fortunately, unlike most cancers, AN's are typically slow-growing, which buys you a little time to shop around if you choose to.

Whatever your decision, there are lots of nice people here to help support you along your journey.  You can vent to us so you don't drive your family too crazy!   

Lori

[moe]

Hi Sonia,
Welcome! Yes, there are very nice folks here. Lori is one of them, and boy does she have a good sense of humor, which helps us all

You are  experiencing a very normal reaction to this, (and no your post was not long). Lots of different emotions being thrown around, and anger is perfectly acceptable. Shock, disbelief are the first for most people, so you may be experiencing that too!

You survived a serious condition with the breast cancer and now this... So I'm sure the "Why me?" question has come up  a time or too also That's perfectly normal and acceptable too!!)

How do you know that you have had the AN for 7 years if they never caught it, just wondering?

Anyway, like Lori said, it is slow growing and benign and given the fact that you won't need  surgery to treat it, should give you a little piece of mind.  Unless your symptoms are debilitating, there is nothing wrong with buying some time until you feel truly comfortable. The treatment with CK or GK is so much easier than treatment for breast cancer, and you'll recover so much easier too

Peaceful thoughts going your way,
Maureen

[CHD63]

Hi Sonia and welcome to this forum of caring, supportive friends.  As Lori said, that's why we exist ..... a place to feel comfortable venting and sharing with those of us who know well your anxieties and fears.

You've had a double whammy with cancer and now this.  As for no one catching the AN, the only way to positively see one is with an MRI with contrast.  My AN was over 2 cm when it was diagnosed after an MRI a year previously (but without contrast) was clear.  So, it was a major shock to me to hear those words "you have a tumor."  As you know, ANs are almost always benign so that should ease your mind.

Try to take a deep breath, relax, then finish your round of doctor visits, and when you are at peace with your decision, go forward.

Best thoughts and prayers for knowing the right answers.

Clarice

[nanramone]

Hi Sonia,

Vent all you want!!! I would to if I were you. Life doesn't seem fair at times.

You have the support of people here - I quickly found that to be true.  I like this forum. It's a place I feel I can always come to, no matter whether I'm my typical upbeat self, or feeling down.

Hang in there, and keep in touch.

Nancy

[cindyj]

Hi, Sonia...glad you've found us!  There are a number of other ANers here who also had breast cancer, so though you are in a very unique group, please know that you are not alone.  I had breast cancer (twice) several years prior to my AN diagnosis and I remember telling my friends and family that it was so much easier making the decision about the breast cancer than it was the AN treatment.  There were just so many "options" that it was overwhelming to me.  It does sound like you are doing the right thing in talking with various doctors and evaluating all of your treatment options.  You will know when you have made the right decision - it will just feel very right and you will be at peace about it...as much as is possible considering the AN

Go ahead and come here and rant and rave, if you'd like , we are all pretty good listeners and we will answer any questions you may have as best we can.

Please keep us posted on your decision!

Cindy

P.S.  I can tell you that the AN surgery was much less painful than breast reconstruction!  And if you choose radiosurgery, it's practically painless.  Yes, there are other issues, and it's no walk in the park, but sounds like you are already somewhat familiar with the AN "gift"of dizziness, ringing, etc.

[Jim Scott]

Hello and welcome, Sonia ~

My response to your negative reaction to your AN and the scheduled radiation is that if you can't vent here, then where?  No problem here because we're all either dealing with or have had an acoustic neuroma and can empathize with your feelings.

I'm certainly not a psychiatrist but I suspect that your anger and resistance to necessary treatment stems from having endured and surmounted the serious challenge of breast cancer and now, just a few years later, you're again faced with something that can be life-altering and that will require you to call on your inner strength to deal with, successfully.  You probably feel as if you don't deserve this after going through your cancer ordeal and your resistance is a way of rejecting a reality that you're loath to face: an acoustic neuroma.  Another Big Problem that only you can deal with.  Frankly, I think that any of us would have very similar feelings, in your position.  So, your venting may be helpful, possibly cathartic. 

I would echo what previous posters have written which is to seek more doctor consults/opinions before plunging into radiation treatment that you're not really comfortable with.   Your overall confidence will affect your attitude going into the radiation treatment and unless you're feeling positive about it, the recovery period may be more emotionally difficult - and who needs that?

Jim

[Sonia]

     Thank you all for the sweet welcome. It's so good to know that there is a group of people who truly understand what I am going through.
      To answer some of the questions, I had MRI's done since 2000 - tingling hands, 2003 - unable to speak for a week, 2005 legs giving out, 2010 - hearing loss. They found lessons and were looking for MS (which they claim is negative?) And now they look back at MRI's (with contrast) and realized it was there all along? Had they told me then, I probably would have made some decisions and I would not have hearing loss. I think that's why makes me most angry. At least with cancer I knew what I was up against (family history) and watch for any changes and made sure I had my mammogram (which by the way is how it was found).
     I guess this is all water under the bridge. I have a couple of questions. I heard mention that ANA can be inherited? Did any of you do any genetic testing? Did you do MRI's on your kids? When my daughter was 6 we found out she was hearing impaired and now I wonder if this is why?
     
     Thanks!
      S :)nia

[lori67]

Sonia,

The only instance of AN's known to be genetic at this point is if you have NF2 (neurofibromatosis type 2).  In that case, you would be more likely to have AN's on both sides, and you could also develop benign tumors along your spine.  There is a genetic test available for that, but they will probably only do it if your doctor has reason to believe you may have it - such as a family history of it, a history of other benign tumors, cafe au lait spots (they look like birthmarks).  I'm in the process of having it done due to my family history, but my doctor said the insurance companies require there to be a high degree of suspicion before they'll pay for it.  Like you, I worry about passing it on to my kids, which is why I decided to have the testing done.  If I have the gene mutation, there is a 50% chance that it will be passed on to my kids, so if that's the case, we'll have to meet with a genetic counselor to discuss adequate monitoring of the kids.  If I don't have the mutation, then my kids will be in the clear.  There's a whole section on this forum about NF2 that you might want to take a peek at.

Sadly, many of us were misdiagnosed along the way.  My AN was in there for about 14 years before we discovered it.  Had it been found sooner, I'm sure I wouldn't have had to sacrifice my hearing.  But, like you said, it's water under the bridge and I can't change it.  Heck, yeah, I am mad about it though!  What it taught me is to be more assertive with my healthcare issues and to not just assume that the doctor knows best.  Sometimes your intuition is more accurate!

Lori

[Lizard]

Sonia,
A little late on this one, but I wanted to welcome you to the forum and please feel free to express whatever sort of emotions you are feeling, that's why were here to help support eachother.
Hang in there, you will determine which treatment is best for you.
Liz

[6pick]

Hey, don't leave me out . . . I want to welcome you, too.

Like everyone else has said, this is the place to vent, cry, expose your feelings, ask questions. We have it (or had it) and we understand.

I believe I've had my "alien" for about 10 years or more. How do I know? Some time in January, 2000, I woke up, stepped out of bed and nearly fell on the floor from loss of balance - not just once, but three mornings in a row. I questioned it, of course, but blew it off saying to myself, "What was that about?". But on the fourth day, nothing. So I figured that whatever it was, it was done and nothing to worry about. Well, in my defense, as we get older we get new aches and pains, right? I had achieved the ripe old age of 51 1/2 and, never having been that old before, who knew? Of course, now everyone says, "I would have checked it out . . ." But I didn't. (Frankly, I don't think my doctor at the time would have had any idea, anyway. His approach to my torn rotator cuff and ruptured bicep was physical therapy. Can you say orthopaedic surgeon?).

My wife and I even thought the "fullness" of my ear was allergies. At the time, we lived in the California foothills around lots of oaks. We moved to the California valley and we are still surrounded by oaks. It was early this year when I seemed to have an accelerated hearing loss that I went to my new doctor who sent me to an ENT who discovered the "alien".

I'll tell you what, it took me a few moments to grasp, "You have a tumor". And then, "The good thing is that it's typically benign". Talk about shock, hell, I was still trying to figure out "tumor".

It did come to me pretty quickly, though, that what is, is - as you said, "water under the bridge".

So what do I do now? My ENT named a number of facilities where I could go to take the next step, I chose one and he got me in. Donnalynn suggested the House Institute in Los Angeles, they are world renown. You might check out Dr. Chang at Stanford University who will likewise give you a phone consultation. Whatever you do, take your time, you have some. As it's been pointed out, these are generally slow growers. First come to peace with your decision, then move forward. And keep us posted - we're here for you.

Anyway, Sonia, so glad to meet you, so sorry it's under these circumstances. No one deserves a double dose.

Mark

[Adrienne]

Hi Sonia,

Welcome.  Sorry that you're in the boat you're in, but you found the right place.

Just one comment that echos what Donnalynn said to you.  If you don't feel at peace with the decision, take your time to figure out if it's the right decision.  You do have time on your side, and you don't need to feel pressured into making this decision in days or weeks.  Research your options, and talk to as many people as you can.

The way you describe going into treatment for your Breast Cancer is not dissimilar to how I felt going into my AN surgery.  I was happy it was finally time to get rid of the tumour, and I felt comfortable that I was going to get the best possible outcome for me.  I wasn't sure what that outcome was, but I was sure that I was in the right person's hands.  It felt comforting at a time of high stress.

I hope you find your comfort as well.  I know for a fact that it is possible.

Huge ((hugs)).  You'll get through this.

Adrienne

[Kathleen_Mc]

Sonia: I can relate to the anger you're feeling. I had been undiagnosed for something like 6 years, and in actual fact I know the neuro. I saw had diagnosed me as "psychosomatic"....and he hadn't even done an MRI before he determined this.......from this my GP treated me as such! When the tumor was finally found was when she showed me his note to her some years earlier.....needless to say the letter I wrote him was not pretty (and that was difficult 'cause he works in the same hospital as I and often came to see my patients!)
Anyway.....I can understand the anger, it needs to get out some how and writing to those who "screwed up" can be very helpful (whether you send the letter to them or not). To say it will subside in time......problem with that is the anger can turn into depression.....better to get it out somehow!
I hope you are able to move past this stage somehow work through it don't ignore your feelings!
Kathleen

[Sonia]

     Thank you for your continued welcome. Ironically, I  just mentioned to my husband the fact that I have scheduled the radio surgery for November 9th but I am still not a peace. No doubts about the machine or even the doctor. But I can't shake the feeling that there is something else going on?
     Today, I started getting my reminders (vertigo and headaches) that this "thing" is there.  I feel I have to do something before this "thing" effects something I won't be able to get back. Then later have regrets of ''should of, would of''' and now what? I do not want to go through another painful surgery. Been there, done that, 8 hours of surgery with my breast cancer and 2 years of reconstruction.
     I am a very strong women but this "thing" has got me down. I am trying hard to make decisions and moving forward for my family sake. I can't stand seeing the worried looks at my kids faces. My poor husband has literally not left my side for a month (sweetie) because he sees how I am feeling. I see the toll it's taking on him too.
     I am praying that God will light my way to what I need to see? Or grant me the peace to do the radio surgery and kill this ''thing '' once and for all.....

[moe]

Sonia,
I'm sorry to hear that you still don't "feel right."  You did not mention the size of your AN?
The Prayer of Serenity comes to mind with your last sentence.. I love that prayer, say it all the time, just to get through life and all the trials and tribulations. (not to mention all the AN stuff).

As far as you being unable to shake that feeling that something else is going on..... Are you afraid that it is not the AN causing these symptoms? How often are the bouts of vertigo and headaches.?

Truly if you don't feel right, would be something to talk to your doctor about. Hopefully they can give you some encouraging words.

All we can do here is offer support, and pray (I will anyway), for the peace that you need to get through this. As compared to breast cancer, the treatment is so much simpler, and there is no brain surgery, so that in itself hopefully gives you some peace of mind.

Hang in there,
Maureen