malignant meningioma metastisis to clavicular area

[jp2008]

I am the primary care giver for my 75 year old aunt who has had surgery four times in the past ten years for meningiomas.  She underwent proton radiation for six weeks about a year ago.  She found a small growth above her clavicle starting last fall (2007) which has now grown to about 8x4 inches and 5 inches high. It is pushing up under her chin and now fills her neck area on one side.  It is thought to be a metastisis of her meningioma.  Her speech is almost unintelligible, I imagine from damage to the speech area of the brain.  She does talk but most of the words are not what she intends.
She is under hospice care, (a weekly assessment from a visiting nurse).  Her vital signs are good and she has a good appetite.  She does seem weak and complains of dizziness, but is able to dress herself and walk to her kitchen.
She asserts that last September 2007, her neurologist told her she had 3 months to live, and she has been waiting to die since then.  The whole family is wondering what to expect.  We are happy to have her with us still, but, it is hard not knowing what is going on.
Since she went on hospice care, no brain scans or other diagnostic tests have been available (medicare won't cover), so we don't really know what is going on in her brain, liver or lungs.
Do you have knowledge of patients with similar situations?  Can you share any knowledge you have helping us know what to expect?
Thanks

[Michael Lim, MD]

I am sorry to hear about your aunt.  In general, meningiomas are benign diseases, but there are variants that can be very aggressive.  I would suggest confirming that they obtained a tissue biopsy of her chin lesion to confirm that clavicular area is a meningioma.  If they didn't perhaps confirming with a biopsy may be a good next step.  If the biopsy confirmed a meningioma, determining how much time someone has left is a very difficult thing.  I would suggest that you follow-up with her doctor to have them make re-evaluation since she's survived much longer than 3 months.

[jp2008]

Thanks for responding.
She does not have a separate lesion on her chin.  The tumor mass which started in the clavicular area has grown as big as a very large eggplant, or football.  It is "pushing up under her chin", as it has grown so large.
The neurologist who did the last brain surgery on her put her on hospice care, so they will not pay for any more diagnostic tests.
I think your suggestion to ask for more tests since she has lived longer than the three months estimate is a good idea.
I will try and talk with her pcp and see if this is possible.