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elfprincess's Recent CancerCompass Activity

  • elfprincess has replied to a post on the message board

    I know you posted this 2 months ago but I came across this.  I was diagnosed in 2012 with a low grade glioma as well.  The first neurosurgeon  that I met with had the worst bedside manners.  Basically told me the minimum, inoperable, could cause paralysis if we do a biopsy, we'll  do a fmri   (functional mri).  3 weeks later I found that they never followed through with the insuranc...

    December 21 at 10:21 PM view post
    • elfprincess has replied to a post on the message board

      I so understand where you are coming from but no guarantees.  Mine grew enough to cause partial seizures and enough for me to get help, which lead to a diagnosis.  Inoperable. But in 3 years it has grown very little.  I'll be totally honest in one regard though, I wish I never knew it was there.  I'm so freaking tired of the seizure meds, the fake smiles, the pity looks, and I'm really, really tir...

      December 21 at 9:56 PM view post
      • elfprincess has replied to a post on the message board

        Good luck on the 2nd opinion. One of the most important thing I can say is that you need to find one that you guys are comfortable with.  One that won't rush you or make you feel like an idiot.   If you aren't sure about a Neuro Oncologist in your area I would call your Neurology office and see if they can recommend someone or call your local cancer center and see if they have a recommendation.  

        August 17 at 3:28 PM view post
        • elfprincess has replied to a post on the message board

          From what my Neuro Oncologist and Neurosurgeon have said that there is not genetic link at all.  Just a coincidence.  After my diagnosis my mom reminded me that my Aunt died just 5 years earlier from a GBM.  We mentioned it to my Neuro Oncologist and she said that they don't run in families that it was just a coincidence.  Maybe in 30 years they will find a link between BTs and Genetics.

          August 13 at 7:00 PM view post
          • elfprincess has replied to a post on the message board

            I'm sorry to hear about your mother's diagnosis.  Before making a decision on a biopsy or not I would get a 2nd or 3rd opinion.  If it is in operable they shouldn't be pushing to do a biopsy.   I have an inoperable BT, no clue what it is besides a glioma because a biopsy is to risky.  I went to 2 different neurosurgeons.  1st one basically said no chance, biopsy would even leave you paralize...

            August 13 at 6:51 PM view post
            • elfprincess has replied to a post on the message board

              I would contact your pharmacy.  They might be able to help you.  There are many regulations out there for prescription medications so donation might not be an option.

              August 08, 2014 view post
              • elfprincess has replied to a post on the message board

                Definitly call your insurance company to see if you need a referal or another doctor near by.  I tried a neurosurgeon locally first but was not pleased with her manner.  She didnt let us ask questions and left us sitting staring at the 1st mri for over 30 minutes before she came in to talk to us about it.  Her office then dropped the ball with my insurance company while trying to set up a functional mr...

                August 08, 2014 view post
                • elfprincess has replied to a post on the message board

                  The waiting game sucks.  I was diagnosed just a month shy of 2 years ago with either a grade 2 astro   or oglio.  Unfortunately mine is in the motor scensory area of the brain so surgery is not an option unless I want to be paralyzed on my right side.  Would need to have a biopsy to determine exact diagnosis, but still risky.  I started out with mris every 3 month and due to scheduling errors...

                  August 08, 2014 view post
                  • elfprincess has replied to a post on the message board

                    First of all how old is your son?  If he is at the age that he can decide which is more important to him: quantity over quality?  Then that is a decision HE needs to make.  I know it is frustrating as a parent to have to watch them make a decision like that, but let me tell you something.  Having to be the one to make that decision for yourself and adding on the expectations of parents and other l...

                    August 05, 2014 view post
                    • elfprincess has replied to a post on the message board

                      I am sorry to hear about your husband's diagnosis.  I want to pass a long something that I read about here on this message board.  It is something that I wish I would have known about 9 months ago when I got my diagnosis.  It is a book called "Navigating Life with a Brain Tumor"  it is available through amazon.com or B&N.com.  It answered a lot of questions and gave some very helpful info...

                      June 03, 2013 view post
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                      About elfprincess

                      Patient
                      Brain Cancer

                      Diagnosed in 2012 with a low grade glioma. I have some support system in place but they don't want to see the reality or hear the reality of it. They don't understand how I feel or how much of a struggle it is to keep what I really feel about it to myself, not that they really want to hear it.

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