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beforearnold
Regular
Joined: 31 Jan 2009
Posts: 17
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 Posted: Sun Feb 01, 2009 3:02 pm Post subject: new (to me) brain tumour |
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This past tuesday, a CT scan done because I had headaches and was not feeling well, found a large rt sided temperoral tumours. I have been in hospital, started on decadron, had an MRI and will have surgery Feb 5th. The surgeon, radiologist etc believe it will be malignant. Anyway, of course, i got on the internet and here i am. Thanks for allowing me to post. As so many say, I am most worried about my loved ones (Hsb, children, father, friends) i am 55 years old, have been working until now and i am about to leap into the great unknown.
Thanks for hearing me out. Any words of wisdom will be appreciated.
mindy |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5985
Location: Tennessee
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| Posted: Mon Feb 02, 2009 5:08 am Post subject: Re: New (to me) Brain Tumour |
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Hi Mindy. I am truly sorry about your tumor. As you can read in the links in my signature block, I have a lot of personal experience with brain tumors. While most of the time the doctors are right in their pre-biopsy assessment, they cannot be 100% sure until the pathology report comes back.
You are doing right (at least in my opinion) by learning all you can now. You might want to read some of my story and the story of others to find so good questions for you to ask you doctor. Key to knowing exactly what will happen next are:
- The specific cell type (astrocyte, oligodendroglial cells, GBM)
- Grade of the tumor (I through IV)
- Genetic information (do you have the 1p/19q gene deletions that make your tumor more responsive to chemo?)
- Location
- Possibility of total or partial surgical removal
You might want to get a notebook and start a medical journal to keep track of your story, questions and answers, medications, etc... and take the notebook with you to your appointment and to the hospital. You would be amazed how many important questions flew out of my mind the moment the doctor walked into my room.
Get and keep copies of all your test results. I even ask for a copy of my MRI. Fortunately, the MRI center where I go puts the images on a CD... I just need to remember to ask.
Good luck. You are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54
FaceBook: http://www.facebook.com/James.Hawking54?ref=profile |
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beforearnold
Regular
Joined: 31 Jan 2009
Posts: 17
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| Posted: Mon Feb 02, 2009 11:19 am Post subject: new brain tumour |
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thank you so much for your reply. I have been reading all of your story which i thank you so much for sharing with the world. i will take your advice regarding appointments and the note book. This afternoon, i have to go to work and "clean up". Life is full of surprises and i sure didn't imagine this.
Thanks again
Minda |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5985
Location: Tennessee
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beforearnold
Regular
Joined: 31 Jan 2009
Posts: 17
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| Posted: Mon Feb 02, 2009 10:37 pm Post subject: Thank you |
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i am so glad i found you..... and it is Mindy, i guess i am losing it only that is not funny anymore. I worked in the afternoon and will also tomorrow. I am a contract manager in a large organization and i have to leave some kind of a trail to follow. Then admission Wed for awake craniotomy Thurs. I sure have good family and friends so i am grateful
Mindy |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5985
Location: Tennessee
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beforearnold
Regular
Joined: 31 Jan 2009
Posts: 17
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| Posted: Tue Feb 03, 2009 9:35 am Post subject: Re: New (to me) Brain Tumour |
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Thank you for your support and wisdom of experience. I am on this journey and there is no turning back (realistically anyway). Today, i am going to try to get my "affairs in order" as much as i can. i also am going to work in the afternoon. In the evening my 24 year old son has asked me to go to his "pick up" basketball game, so i will try to do that. I also want to write my 81 year old father a letter. He lives away from me in a small town and was counting on me to be there for his final journey. Anyway, as he says as he is french "c'est la vie ca" (This is life). I sound morbid, but i am actually realistically optimistic.
bye for now and thanks again for sharing your gift
Mindy |
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beforearnold
Regular
Joined: 31 Jan 2009
Posts: 17
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| Posted: Fri Feb 06, 2009 7:04 pm Post subject: Re: New (to me) Brain Tumour |
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well i am home. I had the awake crainiotomy to debulk the tumor thursday. Certainly not fun, but i survived so that is the main thing. i do no have any apparent deficits so i am happy about that. The tumor was approx 5 inched long,2.5 inches in diameter. He did not try to remove as much as he could but had to stop finally because of the risks. There is major blood vessel involved in the tumor. So the Malignant Gio part was confirmed by quick section. I will need to wait for more details after the more extensive pathology. I will see an oncologist next week. My jaw is really sore and i am having difficulty eating because he cut through the temporal mandibular muscle. But as I told my daughter, i have been building these chubby thighs all these years for a reason, so they can damn well sustain me. The support from my friends and family is very heart warming.
Anyway, just wanted to update you on my circumstances |
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brainman
Site Admin
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Posts: 5985
Location: Tennessee
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beforearnold
Regular
Joined: 31 Jan 2009
Posts: 17
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| Posted: Sat Feb 07, 2009 1:25 pm Post subject: Re: New (to me) Brain Tumour |
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Thank you for your reply. You have become like my new best friend - already. I feel fairly well today. I will keep you posted.
Mindy |
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beforearnold
Regular
Joined: 31 Jan 2009
Posts: 17
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| Posted: Wed Feb 11, 2009 2:25 pm Post subject: question about Memorial Sloan-Kettering Cancer Center |
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I am a Canadian and I have been given this information by a friend whose young son successfully fought neuro blastoma by engaging in experimental therapy (20 years ago). They of course have offered to review my records. It is all overwhelming. I am just 2 weeks since diagnosis. I have had the tumour debulked and i am to see the medical oncologist thurs. At this point i don't even know the final pathology results. I don't know if it appropriate to discuss particular facilities/physicians here but i thought I would throw this out anyway to see if anyone has comments or opinions.
Thanks in advance
Mindy |
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brainman
Site Admin
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Location: Tennessee
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Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
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| Posted: Wed Feb 11, 2009 8:12 pm Post subject: Re: New (to me) Brain Tumour |
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Hi Mindy,
Welcome to the forumn - I'm glad Jim has been helping you out with answers - as he is so good to do. Just wanted to say hello from a fellow Canadian. I don't see where in Canada you are from, but there are a couple of us on the board here.
My husband is the bt patient and we are in BC and get treatment at the cancer agency in Vancouver, along with naturopathic treatment in Richmond.
Sounds like you are doing really well post surgery - keep it up and look forward to hearing from you again soon!
~C~
_________________
Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis |
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beforearnold
Regular
Joined: 31 Jan 2009
Posts: 17
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| Posted: Wed Feb 11, 2009 10:41 pm Post subject: Re: New (to me) Brain Tumour |
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ok thanks brain man
mama, i live in northern ontario - thunder bay
i will report post onc appt tomorrow. i feel very lost at this point in time
Mindy |
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brainman
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Location: Tennessee
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