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robinem
@robinem

Posts: 2
Joined: Feb 08, 2018

Watching a Meningioma Brain Tumor

Posted by @robinem, Thu, Feb 8 12:47pm

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?

REPLY

Same boat except I’m 62. Wait and watch. Might grow. Might not. The uncertainty truly sucks.

Hello @robinm I am sorry for the circumstances, but it is nice to e-meet you here on Connect. I am Scott and I was the primary caregiver for my wife during her war with brain cancer. Her initial diagnosis was given to her in Chicago and was basically told to ‘just wait and watch’. I understand cancer is a very individualistic disease and I certainly am no medical professional, but in her case especially she was a Type-A personality that was not an option for her so she decided on a second option and to undergo a stereotactic biopsy at the Mayo Clinic in Minnesota.

In her case she simply felt she would rather know all she could immediately than take a wait and see approach. But as I said I fully understand how cancer is a very individualistic disease both in how it attacks, how each body reacts, and each patient’s psychological approach to it.

Strength, Courage, and Peace.

Liked by robinem

@ees1

Same boat except I’m 62. Wait and watch. Might grow. Might not. The uncertainty truly sucks.

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Thanks for your response. It helps to know others are dealing with the same issue. My family is freaking out, as I am their “person”. It doesn’t seem fair to them or me to wait and watch, when they have already told me I will need to do something with it. I’m scared to death of the craniotomy surgery, but I guess I would like to get it over and move on with my life hopefully…

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?

Hi Robin, I was 59 years old as well as my Meningioma was discovered on the left side “sphenoid wing” growing round my optical nerve, it had a size of 6cm. I was operated immediately since it was pushing on my brain creating seizure, etc. Anyway, back in 2012 I got my operation, since then I am on the Wait & Watch list, every six months MRI. Unfortunately, at the last MRI they discovered a small growth 5mm (total size 3cm x. 4.4cm). I was informed that during the next operation my speech could be damaged and I could loose my vision in both eyes. I am sad/concerned about this news and look for the very best Neurosurgeon who has done these kind of surgeries. Otherwise …I am so happy I did do the operation back in 2012 and if it would stay like this, I could not wish or ask for a better life!!!

Liked by wkindel, robinem

@pranas

Hi Robin, I was 59 years old as well as my Meningioma was discovered on the left side “sphenoid wing” growing round my optical nerve, it had a size of 6cm. I was operated immediately since it was pushing on my brain creating seizure, etc. Anyway, back in 2012 I got my operation, since then I am on the Wait & Watch list, every six months MRI. Unfortunately, at the last MRI they discovered a small growth 5mm (total size 3cm x. 4.4cm). I was informed that during the next operation my speech could be damaged and I could loose my vision in both eyes. I am sad/concerned about this news and look for the very best Neurosurgeon who has done these kind of surgeries. Otherwise …I am so happy I did do the operation back in 2012 and if it would stay like this, I could not wish or ask for a better life!!!

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Hi,
My sister had Gamma Knife at Mayo in Rochester for 3 small new tumors. She had had surgery 15 years ago for a 5cm meningioma on her frontal lobe. Also caused seizures. She will return to Mayo in April for another MRI. We live in Atlanta but she felt more confident to let the Neurosurgeons at Mayo make the critical decisions. Is that a possibility for you instead of more surgery? Best Wishes for you, Nancy

@pranas

Hi Robin, I was 59 years old as well as my Meningioma was discovered on the left side “sphenoid wing” growing round my optical nerve, it had a size of 6cm. I was operated immediately since it was pushing on my brain creating seizure, etc. Anyway, back in 2012 I got my operation, since then I am on the Wait & Watch list, every six months MRI. Unfortunately, at the last MRI they discovered a small growth 5mm (total size 3cm x. 4.4cm). I was informed that during the next operation my speech could be damaged and I could loose my vision in both eyes. I am sad/concerned about this news and look for the very best Neurosurgeon who has done these kind of surgeries. Otherwise …I am so happy I did do the operation back in 2012 and if it would stay like this, I could not wish or ask for a better life!!!

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Nancy, thanks for your note. Unfortunately for a Gamma Knife treatment my tumor is too big… a surgery is needed. However, at this point I still have time to search for a good NS. I am looking at Rochester as well, it is the best Clinic for brain tumors, based on a statistic. I think I would fly around the world to find the right NS for me. My next MRI is due next month…needless to say I hope it didn’t continue growing. My tumor is Grade 1…which is supposed to grow slowly.

Liked by EES1

@pranas

Hi Robin, I was 59 years old as well as my Meningioma was discovered on the left side “sphenoid wing” growing round my optical nerve, it had a size of 6cm. I was operated immediately since it was pushing on my brain creating seizure, etc. Anyway, back in 2012 I got my operation, since then I am on the Wait & Watch list, every six months MRI. Unfortunately, at the last MRI they discovered a small growth 5mm (total size 3cm x. 4.4cm). I was informed that during the next operation my speech could be damaged and I could loose my vision in both eyes. I am sad/concerned about this news and look for the very best Neurosurgeon who has done these kind of surgeries. Otherwise …I am so happy I did do the operation back in 2012 and if it would stay like this, I could not wish or ask for a better life!!!

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Hi, I have been on watch and wait for many years. Diagnosed even younger than you. Dr. Oneil at Mayo explained at my initial workup that since the risk could be high for surgery in my location of left frontal lobe, and because I was not having damaging symptoms, that I may NEVER need surgery….not that I would HAVE to have it down the road, just depended on growth and symptoms that could happen. Many people have meningioma's and never even know they have them. I have become very comfortable with my watch and wait. With the rapid advances in less damaging and more precise techniques every year, I am GLAD I have had 12 or so years of avoiding such a tramatic surgery and know every year of research is a "gift" in my pocket IF IF IF I ever do need to have surgery. It is very scary when first diagnosed, but at least for me, watch and wait is not much different than going in for my routine health checkups…just part of my "new normal"-ha!

Hello @lindajean

I appreciated your post, especially your comment, "I have become very comfortable with my watch and wait." I agree that advances in medicine make the waiting very worthwhile.

I look forward to reading more posts from you – we all learn from each other!

Teresa

Liked by Lindajean

@pranas

Hi Robin, I was 59 years old as well as my Meningioma was discovered on the left side “sphenoid wing” growing round my optical nerve, it had a size of 6cm. I was operated immediately since it was pushing on my brain creating seizure, etc. Anyway, back in 2012 I got my operation, since then I am on the Wait & Watch list, every six months MRI. Unfortunately, at the last MRI they discovered a small growth 5mm (total size 3cm x. 4.4cm). I was informed that during the next operation my speech could be damaged and I could loose my vision in both eyes. I am sad/concerned about this news and look for the very best Neurosurgeon who has done these kind of surgeries. Otherwise …I am so happy I did do the operation back in 2012 and if it would stay like this, I could not wish or ask for a better life!!!

Jump to this post

I needed your upbeat message. Thanks!!!

I was diagnosed last Sept with a 2 cm meningioma and on the wait and watch path. It was a scary plan at first but I went and got two more opinions. One more neurosurgeon and one neurologist. Basically they said the same thing that many people have them and don’t ever know. My tumor is just left of center against the main center vein about two inches from the front. The risk of surgery out weighs the risk of wait and watch. Meanwhile no serious symptoms. I get how stressful it can be having something in your head that doesn’t belong. I have done some of my own research and trust what the doctors are saying. I have my moments like tonight where it comes to mind and I can’t sleep but most of the time I just live my life like it’s not there. My third MRI is this May. I hope you gain some peace about it. This blog helps and so does my faith. Thoughts and prayers.

When I first heard I had a brain tumor, I thought I was the only one. I've learned, meningioma's are very common. Some grow, some don't. Mine unfortunately was pushing against my brainstem and had to be removed. Not all was removed so I continue to have MRI's. I can say I'm no longer claustrophobic!

It’s very helpful reading all your responses to a mengioma diagnosis. I am 60 years old and just found out about my own diagnosis after suffering a concussion. The doctor recommended CT scan at which time they discovered the meningioma. The doctor recommended an MRI to see the exact size and location so I’m waiting to proceed with that. I’m fairly certain I will have a “watch and wait” approach and I think I’m fine with that.

Welcome to Connect, @twomama. I'm sorry to hear about your diagnosis, and so glad that you've joined this group. While we wait for others to join in, here's some information from Mayo Clinic which you might wish to read: https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643

@twomama, would you be able to share a few more details? How did the concussion occur?

thanks this gives me a calmer outlook because I was diagnosed with one about a month ago and it is located behind my right ear they want to do surgery in a couple weeks thanks for your feedback.

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