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Brain Cancer Survivor..??? 21 years old

anna.rhi
Posts: 3
Joined: Jan 2014

I'm feeling a little at lost and would like to explain my scenario to those who also understand what im going through.

 

7 years ago I experienced consistent headaches. The dotor suggested a CT. Nothing so we followed up with an MRI and a referral to a neurosurgeon. His opinion was its a "smudge" lets monitor it for changes. So it followed for the next couple of years. I had my son when I was 17 years old so I took a break and noticed my headaches easing. Until the June of 2012 they came back severe and I followed up with another request to a difference neurosurgeon. Her opinion after first seeing my scans was "Cortical Dysplasia" She took it to a board meeting with my previous scans and upon next visit informed me her new classification was a Low Grade Glioma. The only thing she wanted to do was another scan in 6 months time.

My mother was not happy about this at all and contact Dr Charles Teo in Australia. We made a booking and saw him within 3 weeks. He explained to me about this being low grade. Given statiscally 4 1/2 years to turn into high grade then 12 months until death. He wanted to remove it to prolong my life. The only thing standing between low grade and high grade was time. It was showing small growth but it was changing. I walked out of the room being told its 6 days until surgery. 

I never had enough time to get my head around the operation, let it sink in or accept it. I wasnt sure if I was in denial that this was happening or accepting it was my future.  The tumor had formed over the left side affecting my speech. He said you can be alseep or awake the only difference is being asleep you are allowing me to remove as much tumor as possible and accept the risks that may come. There was a 20-25% chance I would wake up with a speech problem.

I had the operation and woke up perfect. I even read the book I took on the plane with me that night. I was shifted from the main ICU to a smaller room within the same care and was released from hospital under 24 hours from surgery.  I flew home the following day and reached day 7 from surgey. I was aiming to get back into work. I struggled with headaches daily but average 1 lowest and 10 highest i was sitting around the 5 mark with it being nothing more than a normal headache.

Day 8 I woke up ill. I had a terrible headache and was vomitting. I was driven to the doctors who informed me to go to the hospital. Between switching hospitals as they had no neurocare I repeated the Emergency service having CT scans and Chest scans, taking bloods and unrine samples to test for infection. I gained a lot of swelling around my left eye and side of my face.  I was taking tablets every 4 hours to keep my headaches at ease. After following through with an MRI being outsourced as the hospital had me on emergency but couldnt promise me a time, the following morning I was let go and told to contact Dr Teo. He wasn't in the country at this time so I got on with my days taking Neurofen, Merysondol and Endone tablets.

My headaches eased but are still there and the funny thing is.. these headaches were not a cause of the tumor. It was by luck it was discovered. This is my 6th week since surgery and I just had my follow up with TEO. He is amazed and shocked that my speech is perfect he even made a video of me talking for my record. Since my tumor was removed its new classification is Grade 2 Low Grade Glioma. He has asked to do more testing to find out if its Astro or Oliden. He said Astro is worse and whatever outcome I have from this test wont change or cause any treatment. He couldnt tell via scan how much was removed of the tumor was the contast is still picking up swelling but my next scan is in 12 months time.

I sit here feeling very lucky. I had no symptoms of brain cancer just yet although I went through a major surgery and came out perfect. He said there is a 80-85% chance this tumor will grow back and he has never said he is curing me but prolonging my life. Do I have the right to say I survived brain cancer? I was never ill, nothing has changed about me and I feel no different.   I never needed Chemo or Radation therapy. I still feel like non of this has happened to me and nobody else I know has even been through brain cancer before. I understand there are hundreds of brain tumors a lot worse. I am grateful I was able to be operated on.. but does anybody else feel this way? I never teared up or got emotional over needing the surgey.

Thank you in advance to those who took the time to read this.. I know its long but its better to understand the full story..

mccindy
Posts: 82
Joined: Jun 2013

Yes, you are a brain cancer survivor.  Although they grow slowly, grade II tumors are considered malignant.  I am a little curious about a couple of the things in your story.  First - usually pathology comes back in a few days, or acouple of weeks after surgery, and you will know what your tumor type is.  I knew mine was a fibrillary astrocytoma 3 days after i was released from the hopsital.  Also, 12 months between MRIs after surgery is an awfully long time.  Most people have scans every three-six months.  finally, I'm curious as to why they can't tell you how much of the tumor has ben removed.  Again, my own experience and that of others I've spoken to - most people are told after the first post-surgical scan how much of the tumor was removed.  Then they decide whether to use radiation or wait and watch every few months.  I think these are important questions and you should ask them.

Congratulations on being a survivor. 

anna.rhi
Posts: 3
Joined: Jan 2014

I live in QLD Australia and I flew to Sydney for the operation. Pathology came back 3 or so weeks but I wasn't notified unless it was bad until the 6 week check up.  The type was grade 2 low grade glioma where as before his professional opinion was  a low grade glioma. Now that we know he is doing another test on the issue to confirm if it's astro or oiled as it costs $300 or so.  12 months because he was confident in my recovery and I never had any outstanding issues before. It was a very early discovery and he removed also lost all. I had a scan from  3 weeks. And my 6 weeks shows rapid deduction in the area he removed kt but as contrast aalso picks up the swelling he was unable to tell the exact percentage. His opinion was he attacked it aggressively . 

 

 My surgery date was the 25th of Nov 2013. All tied in around Christmas and the new year with his centre being closed over the break until the 6th. My appointment for post op check up was on the 7th.  The tumor he removed was also the size of a walnut. 

mccindy
Posts: 82
Joined: Jun 2013

It's certainly good news that you had nearly all of the tumor removed-  certainly that means there is less left in there to grow back.  Hopefully you have no regrowth and a long and happy life!  My NO is also confident in my prognosis because 99% of my tumor was removed, but she did say she's more comfortable with scans every 6 months, just to be safe. 

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