1. < Brain Tumor

Watching a Meningioma Brain Tumor

Posted by robinem @robinem, Feb 8, 2018

I've just been diagnosed with a 2cm meningioma tumor on the right front of my head. I am 59 years old and the surgeon has told me I will need to "do something" with my tumor someday since I am younger. What is the benefit of waiting?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 16, 2019
In reply to @bosslady18769 "The dr didn't seem to be concerned and kept repeating that these meningioma are always slow..." + (show)
@bosslady18769

The dr didn't seem to be concerned and kept repeating that these meningioma are always slow growing and would be decades before I noticed symptoms, however I have never had a seizure before and have only had the 1 so far. The migraines are persistent and these symptoms have only been present for about 3 weeks. Thank you for your reply, I was thinking about going to a neuro oncology doctor just to make sure all the i's are dotted and t's are crossed. Especially because I have other health issues
I pray that you get to feeling well and I will pray for a speedy recovery!! God bless

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Hello @bosslady18769
You mentioned the possibility of getting a second opinion from a neuro-oncologist. Just wondering if you were able to get an appointment yet. Are you still troubled with migraines? How are you feeling otherwise?

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gloriajean | @gloriajean | Mar 17, 2019
In reply to @bosslady18769 "I didn't even know I had the seizure until the next day, my husband thought I..." + (show)
@bosslady18769

I didn't even know I had the seizure until the next day, my husband thought I had one related to medication I was on, I had an MRI in November because I thought I was having symptoms related to ms which runs in my family, balance issues, weakness in my legs and just feeling tired. They found the 6mm meningioma on superior frontal lobe on left side. Since the diagnosis I just didn't want to think about it and go on with life. Then 3 weeks ago I started having headaches and then my husband told me about the seizure. I have also been terribly tired and feeling exhausted. Also I'm forgetful I went to my follow up and dr is going to do an eeg, and in may wants to do an angiogram and repeat MRI. I thought ok I will repeat test and if I'm still uncomfortable with him I will go to Nebraska Medicine which supposedly have good neuro oncology drs. I just worry because of my symptoms now. I feel they are related to the meningioma.

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what did your existing NS say would be his solution to an existing 6
cm meningioma? Did he says it was a benign grade 2 tumour? What meds does he have you on - antiseizure meds??

REPLY
gloriajean | @gloriajean | Mar 17, 2019
In reply to @bosslady18769 "I didn't even know I had the seizure until the next day, my husband thought I..." + (show)
@bosslady18769

I didn't even know I had the seizure until the next day, my husband thought I had one related to medication I was on, I had an MRI in November because I thought I was having symptoms related to ms which runs in my family, balance issues, weakness in my legs and just feeling tired. They found the 6mm meningioma on superior frontal lobe on left side. Since the diagnosis I just didn't want to think about it and go on with life. Then 3 weeks ago I started having headaches and then my husband told me about the seizure. I have also been terribly tired and feeling exhausted. Also I'm forgetful I went to my follow up and dr is going to do an eeg, and in may wants to do an angiogram and repeat MRI. I thought ok I will repeat test and if I'm still uncomfortable with him I will go to Nebraska Medicine which supposedly have good neuro oncology drs. I just worry because of my symptoms now. I feel they are related to the meningioma.

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did your NS say why you would have to wait till May for another MRI? His schedule or what reason
?

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bjh369 | @bjh369 | Mar 25, 2019
In reply to @sandra511 "Anyone ever try accupuncture for treatment of their meningioma? I am on "watch and wait" and..." + (show)
@sandra511

Anyone ever try accupuncture for treatment of their meningioma? I am on "watch and wait" and would like to avoid syrgery! I'm 67 years old. I have slight headaches and dizziness. I have ringing in my ears that comes and goes. Worry seems to increase my symptoms. Golfing always helps! Thanks for all of ypur posts. Knowledge is power.

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I've got a watch area where a new tumor is trying to form just a bit below where they took out the 7.2cm one. They want me to go back on double temozolomide and I really don't want to and at 66 I would not like anymore surgery.

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Mar 25, 2019
In reply to @bjh369 "I've got a watch area where a new tumor is trying to form just a bit..." + (show)
@bjh369

I've got a watch area where a new tumor is trying to form just a bit below where they took out the 7.2cm one. They want me to go back on double temozolomide and I really don't want to and at 66 I would not like anymore surgery.

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Hi @bjh369 Always hard when we get into the waiting and watching times with our medical journeys. Plus the kinds of decisions you are having to make are incredibly difficult ones. All I can say is when my wife was presented with care options she did her best to gather all the input and information she could and then made her personal choice based on her mantra of always opting for the choice she felt was offering the best quality of life for her, even if it wasn't the one that might have meant more quantity.

Best of wishes and strength to you!

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1 reply
bjh369 | @bjh369 | Mar 25, 2019
In reply to @IndianaScott "Hi @bjh369 Always hard when we get into the waiting and watching times with our medical..." + (show)
@IndianaScott

Hi @bjh369 Always hard when we get into the waiting and watching times with our medical journeys. Plus the kinds of decisions you are having to make are incredibly difficult ones. All I can say is when my wife was presented with care options she did her best to gather all the input and information she could and then made her personal choice based on her mantra of always opting for the choice she felt was offering the best quality of life for her, even if it wasn't the one that might have meant more quantity.

Best of wishes and strength to you!

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Thank you.

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gloriajean | @gloriajean | Mar 28, 2019
In reply to @colleenyoung "Robin, you asked "I am 59 years old and the surgeon has told me I will..." + (show)
@colleenyoung

Robin, you asked "I am 59 years old and the surgeon has told me I will need to “do something” with my tumor someday since I am younger. What is the benefit of waiting? That is an excellent question. Like Scott says, every person's situation is different. My understanding is watch and wait is recommended when the risk of growth is lower than the risk and/or side effects of treatment. That is a dreadful over simplification. It is better explained here: https://www.braintumour.ca/5833/ask-the-expert-the-wait-and-see-approach

We have several members living with meningioma who have had treatment and others who are under "active surviellance" (my preferred term to watch and wait). Let me bring a few more members into this discussion @eleanor1931seminara1931 @pegorr @lindajean @barbarabx @nancye3 @cnesselroad.

If I were you, I'd ask the surgeon to explain more specifically about the position and rate of growth that may lead to needing surgery later. And if surgery is inevitable, why not sooner?

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Hello - I had a grade 1 benign meningioma tumour removed over a year ago. It was completely removed & determined to be non-cancerous. It'd diagnozed on Oct. 17 in 2013 as a result of my first & only seizure. The NS waanted to operate within 2 days - I believe more because of the edema - than because of the existing benign tumour. Because of extreme fear of craniotomy & not having any time to figure out & realistically look at all options, I simply let each day go by without commiting to surgery. Just couldnt do it. My NS put me on anti-seisure meds & I just got on with my life. It wasnt until April 2017 that I started to have real problems..MRI was done & the tumour has shrunk 10% in size & its shape changed. So I knew I had to go ahead with the surgery. I will not get into the details - I dont want to add any more to your worry. My reason in replying to you is that you MUST ask your NS about the post surgery outcomes & your quality of life! I didnt not - didnt really know ai should ask those ki ds of questions & my bloody NS never, ever told me about the problems I most likely would happen. My head healed well, the tumour was removed successfully but ....
Do as.much research about after-effects & what will be your quality of life & the provlems you will have. it is such a decision to reach. I wish you well!!!!

REPLY
1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Mar 28, 2019
In reply to @gloriajean "Hello - I had a grade 1 benign meningioma tumour removed over a year ago. It..." + (show)
@gloriajean

Hello - I had a grade 1 benign meningioma tumour removed over a year ago. It was completely removed & determined to be non-cancerous. It'd diagnozed on Oct. 17 in 2013 as a result of my first & only seizure. The NS waanted to operate within 2 days - I believe more because of the edema - than because of the existing benign tumour. Because of extreme fear of craniotomy & not having any time to figure out & realistically look at all options, I simply let each day go by without commiting to surgery. Just couldnt do it. My NS put me on anti-seisure meds & I just got on with my life. It wasnt until April 2017 that I started to have real problems..MRI was done & the tumour has shrunk 10% in size & its shape changed. So I knew I had to go ahead with the surgery. I will not get into the details - I dont want to add any more to your worry. My reason in replying to you is that you MUST ask your NS about the post surgery outcomes & your quality of life! I didnt not - didnt really know ai should ask those ki ds of questions & my bloody NS never, ever told me about the problems I most likely would happen. My head healed well, the tumour was removed successfully but ....
Do as.much research about after-effects & what will be your quality of life & the provlems you will have. it is such a decision to reach. I wish you well!!!!

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Thanks for sharing your experience here, @gloriajean I believe it is very important to get a wide variety of views and experiences shared! These things are so different from person to person! Thanks again and I hope things are going OK for you now.

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averagewoman | @averagewoman | May 26, 2019

I am a young 68. I have been on watch and wait for 10 years. Last year it grew, and the surgeon said it needs to come out, but I had parathyroid surgery scheduled. (Now I have Grave's Disease and Thyroid Eye Disease.) This month the MRI showed no change, so the surgeon said we can watch and wait again or I can have it removed. I chose to not have my head cut open this year. If it grows again, the surgeon may tell me now is the time. But at my age? The fun don't done.

REPLY
bjh369 | @bjh369 | May 26, 2019

Man I don't blame you for not wanting your head opened back up. I am a young 66 year old just starting the wait and watch game. I had emergency surgery Sept 27th, 2018. Did 6 weeks of radiation and 6 weeks of tremozolomide. Right now everything looks good even looks like it's backing off a little. I'm doing old Chinese medicine and therapeutic doses of vitamin C IV drip every other week. I will pray yours backs off for good.

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