My tumor, though small (about the size and shape of a Good 'N Plenty Candy ) 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.