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Grade 2 Meningioma Diagnosis: Looking for a place to share my worries

Posted by roggae @roggae, Mar 8 2:39pm

Hello,
I had a craniotomy Jan 30 for a CPA meningioma. Challenging surgery but doc called it a total resection. Surgery report states some affected dura was left. I feel great physically.

Pathology came back grade 2. What I hoped was behind me has moved to conversations about radiation and referral to radio oncologists and discussions of NCI (cancer) treatment before even the follow-up 4 month MRI. Surgeon has largely passed me off though I’ve had follow up questions.

Grade 2 prognosis seems not great and I’m trying to process the news and what comes next. I’m 49, have two tweens, and am the major income earner in my house. I’m having trouble finding a space to share my concerns and feelings.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

p0zitivthnkng | @p0zitivthnkng | Mar 11 7:42am

I hope you, too, find the support you are looking for here.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 15 2:06pm

@roggae, you've come to the right place to be able to speak openly and frankly about your concerns and feelings. I'm also inviting fellow members like @amkaloha @teresaallen @fiddlinchuck @purpleturtle @jmb73 to join in.

You've got a lot on your shoulders as the main bread-winner and 2 tweens that you want to see graduate from high school and college, prepare for life and more.

How much do you share with your family? Do they share their feelings and fears with you?

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1 reply
lctobey | @lctobey | Mar 15 4:17pm

Who was your surgeon.
I was just diagnosed with Stage 1 and my emotions are all over the place not knowing what the MRV scheduled for next week will reveal. Last year I went through breast cancer.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 15 6:40pm
In reply to @lctobey "Who was your surgeon. I was just diagnosed with Stage 1 and my emotions are all..." + (show)
@lctobey

Who was your surgeon.
I was just diagnosed with Stage 1 and my emotions are all over the place not knowing what the MRV scheduled for next week will reveal. Last year I went through breast cancer.

Jump to this post

@lctobey, I can imagine your emotions are all over the place. Do you know if the brain tumor is a separate issue or is it spread (metastasis) from the breast cancer?

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roggae | @roggae | Mar 16 12:07am
In reply to @colleenyoung "@roggae, you've come to the right place to be able to speak openly and frankly about..." + (show)
@colleenyoung

@roggae, you've come to the right place to be able to speak openly and frankly about your concerns and feelings. I'm also inviting fellow members like @amkaloha @teresaallen @fiddlinchuck @purpleturtle @jmb73 to join in.

You've got a lot on your shoulders as the main bread-winner and 2 tweens that you want to see graduate from high school and college, prepare for life and more.

How much do you share with your family? Do they share their feelings and fears with you?

Jump to this post

Thank you. My wife and I have talked a bit about it. Trying to keep things upbeat while also planning longterm. I feel great now so I don’t want to overlook that.

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roggae | @roggae | Mar 16 12:11am
In reply to @lctobey "Who was your surgeon. I was just diagnosed with Stage 1 and my emotions are all..." + (show)
@lctobey

Who was your surgeon.
I was just diagnosed with Stage 1 and my emotions are all over the place not knowing what the MRV scheduled for next week will reveal. Last year I went through breast cancer.

Jump to this post

Schwartz and Friedman at ucsd. Top notch.

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lctobey | @lctobey | Mar 22 8:50am

Where did you have your surgery.

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1 reply
roggae | @roggae | Mar 22 9:03am
In reply to @lctobey "Where did you have your surgery." + (show)
@lctobey

Where did you have your surgery.

Jump to this post

UC San Diego.

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geegeebabe | @geegeebabe | Mar 25 10:35pm

I had a meningioma 20 years ago. The first doctor who found it told me over the phone that I had a brain tumor. Needless to say, I lost it. The second doctor I went to, scheduled surgery, and the day of surgery came in a told me he didn’t think I’d make it through the surgery, so he wouldn’t do it. But I did get stereotactic radiation, which dissolved it. Fast forward 21 years and I now have a second one. This is in a different spot, but could possibly be a growth from the original cells that weren’t eradicated the first time. Of course, I am living in a different town now, but the surgeon is one that is highly recommended by my other doctors, so I feel good about that. I am a bit nervous, but after having gone through this once, I am much calmer than I would be otherwise.

I say all of this to let others out there that are going through this for the first time, it’s not as bad as a cancerous tumor. It is slow growing, and it’s NOT CANCEROUS. If you are worried, talk to your doctor, find support wherever you can find it, and take it one day at a time. You will get through this. My first one sat on a major blood vessel, and they were worried about it cutting off the blood supply to the brain. It’s scary, but you will get through it. You will be okay. Treat yourself well and remember to love life. Take time to appreciate the world around you, and the people in your life. You will get through this and you will live a long and happy life. I send my love to each and everyone of you.
Gina

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