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elfprincess's Recent CancerCompass Activity

  • 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
                  • elfprincess has replied to a post on the message board

                    I go to Mayo in Rochester for my brain tumor and I have been happy with my doctors.  My problem is that there are some office staff in the neuro department that couldn't care less.   I also have to disagree with your statement about "if you have money you can get anything, and you can be cured of this dreaded 'c word'.  Otherwise, you're a nothing to them, and they would prefer you just 'go away'". &n...

                    June 03, 2013 view post
                    • elfprincess has replied to a post on the message board

                      I did end up going to an estate lawyer as well.  at the time it was the one thing that I could control and I needed that.  I signed the papers on the will, living will, health care initiative and my dnr on 12/31/12, what a way to start a new year.  I just want to make sure that certain people get certain things and I know my parents will make sure that happens but some of the things are going to go to ...

                      March 30, 2013 view post
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                      About elfprincess

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                      Brain Cancer

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