i_am_scared's Journey with High-Grade Astrocytoma (also called G...

Family/Friend: Brain and Spinal Cord Tumors in Adults > Glioma > Astrocytoma > High-Grade Astrocytoma (also called Glioblastoma)

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: about 5 years ago, Male, Age: 67

  1. 1
    almost 5 years ago
    i_am_scared's Avatar

    Initial Visit to a General Practitioner

    Clinical Trial

    My father, aged 62, was absolutely normal until about the 3rd week of September 2012. Just to give you some basic info - He has never had any major ailment/weakness/surgery whatsoever. His vitals are normal (Blood Pressure, Non-Diabetic etc). A very healthy and active person in general. Since the 3rd week of September 2012, he was not really talking much and had a slight fever and general weakness. There were a few days he passed loose stools. We took him to a General Practitioner who gave him medicines for the fever and stools. We though he wasn't talking much due to fatigue. 2 weeks or so later, we noticed a drastic change in his mental orientation. He would not talk. He would stare at me blankly for about a minute when I asked him a question. Only when I repeatedly asked him something he would give me an answer using very little words. His sentences would be really short. His general mental orientation became poor. There was this one night he was vomiting. The next day (12th October 2012), I took him to another doctor (Our family doctor). I didn't take my dad to our family doctor right at the first instance because of the distance to the clinic from home which is quite a bit. As soon as our family doctor saw my dad, he asked us to rush him to a hospital immediately without further delay. I did what I was told to do.

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  2. 2
    almost 5 years ago
    i_am_scared's Avatar

    Diagnosed

    Oh No

    As we got to the hospital, my dad went through a few tests (Blood, urine and a brain CT scan). The doctors suspected a Brain Tumor and suggested further diagnosis/investigation for which my dad had an MRI with contrast test. That confirmed the Brain Tumor. The tumor was located in the Left Frontal Lobe (in lay man's terms - In the left side of the brain just above the eye and towards the ears). The size of the tumor was 5x3x2 cm (quite big). The doctors told us (including my dad) that there are about 90% chances that the tumor is malignant. The MRI scan with Contrast report read as Astrocytoma. They told us that my dad had to go through a brain surgery. They would remove the tumor and get the tumor tissue tested to diagnose if it is a malignant or a non-malignant tumor by the Neuropathologists.

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  3. 3
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    My dad was prepared for the surgery which was done on the 20th October 2012. He is a courageous person and we were by his side wishing him a speedy recovery and gave all the strength and love we could. The surgery lasted for about an hour and a half. The tumor was removed. The very day I could see a great change in his mental orientation. He came out of the surgery smiling at me. I just asked him a few memory based questions (like my name and stuff) which he answered without thinking for a second! He could talk to me. A huge improvement compared to his condition prior to the surgery. I was very happy. He had a real speedy recovery. He could even step out for a walk!. (There was a nice garden just outside his room and I used to take him out of his bed on an evening walk while we had a nice chat everyday - pre & post sugery) But that's not the end of our misery. I figured that the surgery was just phase 1 which of course went extremely well. The surgery was just a part of further diagnosis. We were told that the Neuropathology report (tumor being tested in the lab) will tell us the actual condition and post that the real treatment would start.

    Went as Expected: Strongly Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    almost 5 years ago
    i_am_scared's Avatar

    Diagnosed

    Oh No

    After a few days (30th October 2012) the test results arrived. Holiday season in Bangalore, South India where I am. Hence the delay. The results came out just 2 days ago (today's the 1st of November) and it read as GLIOBLASTOMA GRADE IV Left Frontal. The first thing I did was read about Glioblastoma on wikipedia. Unfortunately for me, the article written on wiki was quite convincing! I just wished wiki was wrong this time. But when I met the doctors again, they made me sit down and explained to me that the this condition/cancer is highly critical and my dad would survive for anywhere between 11 months to 2 years. Median being about 15 months. The chances of him surviving for over 2 years is 27% and the chances of him surviving for over 5 years is less than 10%! I took a deep breath and brought my mind to a composed state. I asked about the quality of life my dad would have. They explained to me that for the next 1 year or so (12 - 14 months), he will be alright. Post which these below will happen and will happen fast. Headache - Vomiting - Mental Disorientation - Loss of Memory - Loss of control over his bowels - Death. And importantly - This is the prognosis even IF we go ahead with Chemotherapy (Temozolomide) + Radiation Treatment.

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  5. 5
    almost 5 years ago
    i_am_scared's Avatar

    Numerous questions in my head!

    Decision Point

    1. As of today - should I break the news to my dad (patient) and my mother just now? Dad - He's just out of surgery and recovering. May not want to hear this news. Mum - A very emotional person. May not be able to digest this news. 2. Should I break the news - Who should do it? Me? A close relative like my uncle? or the Doctors themselves? 3. Should we go ahead with Chemo + radiation as per doctor's suggestion? - Heard that it sorta sucks out all the life/light out of the person. Might stay alive, but like a vegetable. (I could be wrong on this. Rather I hope.) 4. Any alternative therapies? Just so you know - I am his 24 year old son. Just started my career. Feel really scared. But trying to put up a really brave act - atleast in front of my mum and dad. Telling them that its gonna be alright. I have an elder sister who lives/works overseas. She did visit my dad post surgery for 5 days and she's equally scared/worried and feeling helpless since she lives away! I would really appreciate if someone could give me some hope/ right guidance/ answers to my above questions as soon as possible.

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