Author Topic: Newly Diagnosed  (Read 12375 times)

Jim Scott

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Re: Newly Diagnosed
« Reply #30 on: March 20, 2009, 02:20:38 pm »
Molly ~

I'm pleased to learn that you're making plans to eventually address your AN.  A temporary 'Watch-and-Wait' approach is fine because you're moving forward, as it were, and not simply stalling the inevitable.  Although I hope they might dissipate, I suspect that your symptoms will motivate you to deal with your AN, likely by September, as you indicated, if nothing untoward happens between now and then.

While you're contemplating your decision, many people will be thinking of you and including you in their prayers as you deal with this dilemma.  I'll be one of those people.

Stay strong and please stay connected, here.    :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Keeping Up

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Re: Newly Diagnosed
« Reply #31 on: March 21, 2009, 09:30:51 pm »


My tumor, though small (about the size and shape of a Good 'N Plenty Candy  :D) is located right next to the cochlea, vestibule and semicircular canals - those important organs for hearing and balance.  This makes preserving hearing with surgery all the more tricky.  Because of the size of the tumor and my age (50) , he suggested watch and wait and, if it grows - surgery. 

A temporary 'Watch-and-Wait' approach is fine because you're moving forward, as it were, and not simply stalling the inevitable. 




Hi Molly (again)
A bit curious - as I assumed a few things on the first read.  Since I can't have a conversation with you ... I will just continue typing.  Based on the above description, I would assume you have an intracanicular tumor as the IAC is about 1cm before it reaches the CPA and since your tumor appears to be up against the inner ear structures (right  next to the ear drum) thus, far away from the CPA.  [See comment below - I am an accountant and don't know inner ear anatomy very well]  I would imagine this is why the doctor is suggesting W&W and perhaps reluctant to pursue radiation due to the proximity - my point, ICA tumors grow even slower than their cousins next door in the CPA.  [A bit of humor - another reason to be happily Cdn - I get along with metric measurements!]

I am also curious, because maybe I have misinterpreted your posts - how long did your ENT think you could remain in W&W/conservative mgmt.  I haven't quite gotten down what different doctors might mean by W&W (as you will read, my ENT and radiologist don't think I will need treatment for a substantial period) - is it months or years?

I am (potentially) in a similar sinking ship - however, it is important to distinguish these suckers - alas, my position in W&W.  I have been led to believe by both the ENT and the radiosurgeon that these ICA tumor will most likely not grow much beyond 1 mm/year (of courses - stats again, the tumor may react abnormally).  I have also been told with tumors all within the IAC, the W&W could be 2 or 4, or potentially 10 years - the key is, as long as you are comfortable with hearing loss and continuous follow-up (both of which you could potentially have with either surgery or radiation, in particular GK).  The likelihood of the tumor growing sufficiently to hit the brainstem without a lot of warning is very remote. 

Thus, I come to Jim's comments.  While I know it doesn't help very much in the early days post-diagnosis - and I may eat my words in a few months at my 6mnth MRI, but I believe I will sit in the W&W for at least a few years - anything more than 2 years, I don't view as temporary - I will be out of diapers in this household in two years - and that is practically a lifetime of relief.  Do I think I will eventually receive treatment - yes, but do I think the odds say it will be within 2 years - no, I think, as long as I have no symptoms that substantially slow down my exceptionally busy life (active, mom of 4 little ones, full time working in an interesting/demanding job) I won't seek treatment - save of course deteriorating hearing loss, tinnitus - I do think that odds are higher that I will have a hearing aid, at less than 40, than have treatment before 40.  I will admit, I am a bit laid back in many aspects of my life.

I have a few interesting studies/articles - some of which were published by my ENT team on conservative mgmt (a 10 year study - 72 patients followed for median 10 years - 65% patients have done nothing ... the bulk of the 'failures' occurred in the first five years) - if you are curious, PM me - I will email them on.

Again - my comments are rather specific to intracanicular tumors so I could be way off base as inner ear anatomy isn't my specialty (I am an accountant by training) as they are known to even grow slower than the CPA tumors.  I am also comfortable with hearing loss - as I will take that over the other potential deficits of AN treatment.  I am hoping I fit that long-term W&W basket, perhaps a bit of stalling to watch my kiddos grow up and become more independent, allow me to remain active well well into my 40s, and also to earn a good living (I am key source of income in this household).

Good luck - I found it useful to ask the ENT for conservative mgmt studies or other studies that fit his philosophies - especially if you interpreted you might be on the waiting ship for awhile.

As with everyone's decision, but in particular those with small tumors - I will wait on the sidelines and watch your story unfold with great interest.

Ann
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

mk

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Re: Newly Diagnosed
« Reply #32 on: March 22, 2009, 09:20:06 am »
I agree with Ann that having an AN probably "guarantees" a hearing loss at some point, whether it is immediate (as after translab surgery), or long term (as with radiosurgery and W&W). Oddly enough, hearing loss is more of a common problem with small ANs (inside the IAC), rather than large ones (on the CPA).  From what I have read though, I have also realized that problems like vertigo, dizziness, extreme fullness in the ear etc. are also more common with the small - IAC ANs. These can occur even after minimal growth, since the space inside the IAC is so limited therefore the pressure due to the AN can be substantial, and they can be quite debilitating.

Ann, I know that you have found a "confort zone" with W&W, but I just wanted to point this out. I think that living with hearing loss can be quite manageable, as so many have attested here, but extreme vertigo etc, can be another business ... Did your ENT discuss this at all?

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

MissMolly

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Re: Newly Diagnosed
« Reply #33 on: March 22, 2009, 10:59:20 am »
Hi Marianna and Ann,

Thanks for your posts, I always appreciate learning more about other peoples' experiences. 

My tumor is actually right up against the inner ear organs (vestibule, bony labrynth and cochlea).   The eardrum is the first 'solid' thing you run into as you enter the ear canal from the outside.  So, if you're walking through my ear you would walk through the drum, the ossicles (those three little bones) and then hit the labrynth, vestibule and cochlea - the organs for hearing and balance.  The auditory nerve shoots out from there and into the CPA.Sooooo, the tumor is nestled against those three and goes through the channel in the skull and is just starting to poke out into the cranial cavity.  The neuro otologist tells me that tumors generally grow towards the brain, and it looks like mine is just getting ready to move in there.  As to how much it grows and how long that will take is the big question. 

The vertigo and dizziness are a concern, though they come and go.  They aren't debilitating at this point, but I do see them progressing.  I'm also having twitching in my left eye (a sign that the facial nerve is under stress).  As for the hearing loss, I'm a speech pathlogist and listening is a BIG part of my job.  I am also a trained singer and am a member of a very active women's acappela group.  I need both my ears to blend my sound with other voices.  So the losing hearing thing has been a big worry for me.  I'm concerned about the quality in which I do both of those things, both of which I LOVE.  It's been an emotional rollercoaster for me since I learned that I most likely will lose hearing in that ear.  The quality of my life may be impacted more than if I had a different job and interest. 

I'm feeling pretty confident in the team at Mass Eye and Ear that they are giving me the straight story.  It's all the variables that keep me up at night!  So, I'm taking my time before I make take any quick action to go into surgery.

Molly


Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

mk

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Re: Newly Diagnosed
« Reply #34 on: March 22, 2009, 02:02:08 pm »
Molly,

there have been quite a few ANers with concerns about hearing retention recently, so it might be worthwhile looking at their posts. Tumbleweed and Tisha come to mind.
I also noticed that your doctors talked only about Proton Beam radiation. How about CK?  There have been quite a few positive outcomes with CK, including good hearing retention. You may want to contact with Dr. Chang at Stanford.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

LisaP

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Re: Newly Diagnosed
« Reply #35 on: March 23, 2009, 05:17:22 am »
Miss Molly,

Thanks for your update about how you feel about Dr. McKenna.  I too liked him but he only talked about surgery with me.  I continue to w&w and deal with symptoms daily, (oh what fun us AN people deal with!!!).  Please keep us all posted.  I still after one year do not know what I will do.  I am not due for my next MRI until Feb of 2010.  Until then my AN and I march on and on!!

LisaP

LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Mickey

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Re: Newly Diagnosed
« Reply #36 on: March 23, 2009, 08:28:20 am »
Hi Lisa! Reading your post I noticed my AN to be just about the same dimesions. Diognosed in 2006 I have had 3 mri's and now waiting for my first yearly in AUG. I`ve also turned 60 in this process but have had symptoms for 30 years! As per consiltation with my doctors W+W is a very good course of action when no growth and minimal symptoms are present. There are many opinions here and one that is gaining popularity is that in some cases AN`s do run their course and no intervention may ever be required. In any case a monitoring of symptoms and mri`s should be all we need to determin course of actions. Best Wishes, Mickey

Jim Scott

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Re: Newly Diagnosed
« Reply #37 on: March 23, 2009, 08:28:35 am »
Molly/Ann:

To clarify: For the vast majority of AN patients, 'Watch-and-Wait' (observation) is by definition, temporary.  While there is always the possibility that the tumor will simply cease growing, this is more of a hope than a reality, although it does occur.  Thus, I consider observation (watch-and-wait) as a temporary situation - one that is likely to change at some point.  My comments made the observation that if a patient is 'monitoring' their AN via regular MRI scans, this is progress, as opposed to ignoring the AN, altogether.  I regret any misunderstanding.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Esperanza

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Re: Newly Diagnosed
« Reply #38 on: March 23, 2009, 12:31:03 pm »
Just to add my pennyworth on watch and wait - it is all about location and individual anatomy rather than just size! 

Mine is only 12mm but starts much higher up in the IAC (in fact I only have a tiny 'tail' in there! but is already 'kissing' my brain stem - nerves of steel needed somestimes for this journey - I am holding out for now in the hope it behaves as I have things I want to complete before I 'deal' with it but of course am aware of my symptoms and how they interefere with my quality of life -  which I why I think I would plum for SBI and endoscopic which would (?) minimise recovery time and let me carry on with my life with minimal disruption - just got to work out a way of funding the £92k plus travel etc...   :o

I think these AN things are like putting a jigsaw puzzle together and just hoping you've got all the pieces to complete the picture!!

Good luck with yours!
« Last Edit: March 23, 2009, 12:33:23 pm by Esperanza »
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

Mickey

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Re: Newly Diagnosed
« Reply #39 on: March 25, 2009, 10:24:22 am »
Hi bambi! Just do what you are doing and let your MRI be you guide! Whatever the case there is light at the end of the tunnel and your going to be alright! One step at a time, prayers are with you, Mickey

GRACE1

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Re: Newly Diagnosed
« Reply #40 on: March 25, 2009, 01:36:45 pm »
We are here for you.  You will be in the thoughts and prayers of a lot of people. 

Grace
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

 


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