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Long term prognosis for malignant convexity meningiomas?

gregormiguel
Posts: 3
Joined: Sep 2011

Hi all
My lovely 19 year old daughter has recently had a malignant convexity meningioma removed from the back of her head.

Docs are confident they got it all but the brain surface was reddish and they said this might mean some malignant cells remained. She has just fininshed 6 weeks of radiation and is diong perfectly but will need follow up MRIs for what sounds like the rest of her life?

While she is happy to talk about the mechanics of what she has been through (she is a med student), I do not want to discuss with the long term prognosis and life expectancy etc with her.

I have read a 1997 paper that focuses on the very topic but the conclusions look quite negative regarding re-occurence and long-term survival rates. Can somebody please direct me to a more current research or inform me of what she can realistically expect in the future?

Thank you
Greg

gregormiguel
Posts: 3
Joined: Sep 2011

- nil response confirms this I guess

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I have multiple mengingiomas throughout my skull: skull base, optic nerve, optic nerve chiasm, eustacian tubes, 2 of the 4 sinus cavities, carotid artery and they are fused into the jaw bones in my face.

As far as meningiomas go, they are considered the "best" tumor to get if you have a brain tumor. Meningiomas typically take 20 years to grow and show symptoms

That said, I was diagnosed at the age of 32. I had an 18 hour brain surgery that included the skull base, optic nerve and my sinuses. I also had 2 sinus surgeries and IMRT radiation therapy (30 sessions). It is now 15 years post-radiation, 17 years post-brain surgery and I have been told that the tumors are back. Back in the same areas where I had surgery and close to the area where I had radiation.

MRI's and CT Scans are a way of life with meningiomas. I was actually at the once every 5 year mark for MRI's and they found new tumor growth. I am on Watch and Wait while we battle the other issues that have shown up because of the radiation therapy. Hypothyroidism (low thyroid) and low adrenals. I am now on medication to help counteract the effects of the radiation and we are in the process of deciding whether or not I need more surgery: sinus and brain. We have ruled out more radiation at this time because if I have it again, I will never be able to have it in the future and we are saving that as a last resort. The MRI's and CT Meningiomas are graded by location, size, etc just like other brain tumors. The tumors can be benign or malignant due to the location and the accessibility of the tumors. Mine are considered malignant because of the inoperability around the carotid artery and optic nerve chiasm.

Arm yourself with research. Meningiomas are beatable and treatable and people can live a long and healthy life with them. But get the knowledge you need, via internet or the specialists, to know what to expect. There are many good websites available that discuss meningiomas. You may have to look a little to find them, but they are out there.

Best,
Teresa

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