Just diagnosed with Meningioma

DamonMD
DamonMD Member Posts: 3

Ya i got hit today with the news.  I am devastated. I dont even know what to think about it all yet.  I knew something was wrong because when i moved my head around  a lot with some speed or force I felt like I had a headache, or if i bent over..  Sometimes it was hard for me to focus on seeing words.. and some ringing in my ears once in a while.   I went to the Veterans hospital and got a CT scan , and later today she called me..  

VA health care isnt the best, and her profesionalism bothered me, because she kept saying dont worry , its only 4mm  its a beniegn tumor.. she laughed giggled while talking to me.. I dunno.. To me this seems pretty serious..  Maybe it isnt such a bad type of cancer compared to the others that are aggressive, but nevertheless  this scares me, and I fear for my life, wondering if this is going to kill me soon..  

I did contact by phone the National Cancer Institute and some other cancer place that had hotlines to talk to someone to get information.  So this has really been helpful.  

I figure I could join a community of others with sypport because I didnt want to go through this alone. As I said, im scared, worried,  dont know much yet about the diagnosis until I see a neurologist.

This was the first discussion board I found, so I am not sure if its a popular one where many people communicate, or if there are others.

But anyway ya..   it sucks.. I hope my life can still move forward.

Thank you for listnening ..and any encouragement is welcomed

Damon

Comments

  • Rocklibby1
    Rocklibby1 Member Posts: 1
    edited September 2020 #2
    Meningioma

    First diagnosed with meningioma after not having the strength to get out of my bathtub. Surgery removed the plum size tumor in July 2012. I felt so much better after surgery because I did not know that my constant fatigue was being caused by this tumor. I recovered very quickly and began the annual to 18 month scans to insure the tumor was gone.

    In 2016, the MRI showed my tumor returning and my doctor has been watching it's growth since then. I have no symptoms that I am aware of.  Last week, I met with a radiation oncologist to learn about another option for treatment other than surgery. Chemotherapy is not usually a treatment for brain tumors.  But every patient is different, so develop a good relationship with your doctor(s) and their staff. Keep a journal to write down everything you learn and the questions you want answered. Don't be shy about asking questions. This is you life after all. 

  • DamonMD
    DamonMD Member Posts: 3
    edited October 2020 #3
    Thank you

    Thank you for letting me hear your story.  I finally did get to talk to a Neurologist and he said mine is realy small like 4 mm .. I asked if I should be concerned..  But he said, " If I had this I wouldnt be worred about it, it would be the last thing on my mind"  So I put it out of my mind.  He is going to have a MRI with contrast done in a few months to see how much blood flow to it there is.  He comcpared it to a catscan done back around 2013  and even though no one said there was anything back then, he thinks maybe there was..  I dunno.. its all over my head..  I did have an appointment with an oncologist as a second opinion in a couple weeks.

    My main thing that scared me is i got on the internet and read meningioma this and that .. all i seen was death death death.. doom and gloom...  It all scared me, but after talking to the neurologist and him saying what he did, if he feels it is nothing to worry about then I trust that.  I think its like 4 mm in size, which is very small. I think he said its growing in the back of the head some where like a tiny little nub on something back there.  So anyway.. Ill see what the oncologist says.

  • DamonMD
    DamonMD Member Posts: 3
    edited October 2020 #4
    DamonMD said:

    Thank you

    Thank you for letting me hear your story.  I finally did get to talk to a Neurologist and he said mine is realy small like 4 mm .. I asked if I should be concerned..  But he said, " If I had this I wouldnt be worred about it, it would be the last thing on my mind"  So I put it out of my mind.  He is going to have a MRI with contrast done in a few months to see how much blood flow to it there is.  He comcpared it to a catscan done back around 2013  and even though no one said there was anything back then, he thinks maybe there was..  I dunno.. its all over my head..  I did have an appointment with an oncologist as a second opinion in a couple weeks.

    My main thing that scared me is i got on the internet and read meningioma this and that .. all i seen was death death death.. doom and gloom...  It all scared me, but after talking to the neurologist and him saying what he did, if he feels it is nothing to worry about then I trust that.  I think its like 4 mm in size, which is very small. I think he said its growing in the back of the head some where like a tiny little nub on something back there.  So anyway.. Ill see what the oncologist says.

    I seen the oncologist today..

    I seen the oncologist today.. So between him and the neurologist they said they wouldnt even worry about this thing. Its small, 4mm x7mm  its not pushing againt anyting.. Nothing is out of alignment.  The oncologist said that many people have these their entire life and never know they even have them. He said they are most of the time non cancerous, beneign, and dont invade spread..  

    So the only thing they plan to do is just an MRI down the road with contrast to see the blood flow to it..  Maybe check in a year after that. if no growth then forget about it all together.  So im relieved. The worst thing i did was read the internet about Menigiomas and it was all doom and gloom 5 years for this or that.. etc.. I should have known better than to read all that stuff.

  • Forherself
    Forherself Member Posts: 631 **
    edited October 2020 #5
    DamonMD said:

    I seen the oncologist today..

    I seen the oncologist today.. So between him and the neurologist they said they wouldnt even worry about this thing. Its small, 4mm x7mm  its not pushing againt anyting.. Nothing is out of alignment.  The oncologist said that many people have these their entire life and never know they even have them. He said they are most of the time non cancerous, beneign, and dont invade spread..  

    So the only thing they plan to do is just an MRI down the road with contrast to see the blood flow to it..  Maybe check in a year after that. if no growth then forget about it all together.  So im relieved. The worst thing i did was read the internet about Menigiomas and it was all doom and gloom 5 years for this or that.. etc.. I should have known better than to read all that stuff.

    I was just looking over from another page

    And wanted to say how nice to read you got good news.   It is scary to hear the word cancer.  You mentioned the word benign, and that usually means its a growth but not cancer.  I hope it stays that way!

  • Rynn_2
    Rynn_2 Member Posts: 3 **
    edited December 2021 #6

    A meningioma is a primary central nervous system (CNS) tumor. This means it begins in the brain or spinal cord. Overall, meningiomas are the most common type of primary brain tumor. I recommend getting live-in care if it gets worst. You don't want something to happen and not be able to do anything. My mother was immobilized four years ago, and I hired (content removed by CSN moderator) for her. The good news is that it can be removed if it's small and not in complicated areas. People can live long lives with it. But I recommend getting live-in care if it gets worst. You don't want something to happen and not be able to do anything.