my story - long term survivor

JakeLee Member Posts: 10

I've never really shared my 'story' with anyone before and thought I would post it on this forum.  I've posted here in the past trying to get in touch with any other long term survivors.  



I'm writing this from my phone, so please excuse any spelling and/or grammatical errors.  


At 12 years old (in 1997) I was diagnosed with an anaplastic astrocytoma grade 3. It all started with what my parents and family doctor thought were sinus headaches caused by fumes from the construction materials in the New home we had just moved into.  After a few days of severe headaches that wouldn't disappear and a phone call from one of my teachers voicing concern because my handwriting had progressively gotten worse over the last few months. .. I was rushed to the hospital for an mri. A few hours later I was called in to the doctors office (after hours) to go over my grim results. I remember the dr pointing at my scans and mentioning something abnormal showing up on my scans.  




Immediately,  I was rushed to musc in Charleston sc to be prepped for surgery.  I remember that 1hr drive like it was yesterday.  I nervously asked my parents "it's a brain tumor,  isn't it?". At 12 years old. . I really don't think I knew what that meant or even what a brain tumor was.  Frankly,  I don't ever recall hearing the word tumor before. Anyway, after admittance to the hospital.. I was immediately greated by the resident priest. At the point I realized 'this must be bad'. 


After a 9hr surgery: I woke up in icu surrounded by family and friends.  A few days after surgery.. It was explained what had happened to me. Well,  in 12 year old terms.  I had a softball sized anaplastic astrocytoma grade 3. The surgeon removed 99.9 percent of the tumor (all visible signs of the cancer).



After a few weeks, I started radiation.  I don't remember my actual dose. .. but I do recall it lasted about 3 months almost everyday. I also remember my radiation oncologist having a sincere conversation with his 12 year old patient:: "some kids don't make it past the treatment"



I finished my treatments off with a year of chemo after I completed the radiation therapy.  My chemo consisted of vincristine and ccnu. 



4 to 6 months into my journey. . There was a scare.  Something was showing up on my scans. This 'change' was watched closely and I had a few additional tests over a few weeks.  My'team' came to the conclusion it was scare tissue from the surgery. 


After finishing treatments I returned to school. I did fairly well in school. .. although I was rebellious like any other teenager.  drinking,  smoking,  promiscuous behavior. Probably not the best idea for someone who had been on their death bed only 2 years or so before.  



Fast forward 6 or 7 years. I dropped out of college to 'become my own boss' in 2006. At 28 years old,  I now have a thriving business... a beautiful wife... and a three year old daughter.  I am thankful for the life I have and extremely thankful that I'm still able to live it. 

On September 27th I will be celebrating my 16th cancer anniversary, my 4th wedding anniversary,  and justfinishing construction on my new Beach House.  A person must embrace their past in order to appreciate their future. 

I'm a pragmatic thinker,  primarily.  I know that my cancer will return one day. However,  when it does. . I'll be ready to fight again.  



If anyone had questions about my surgeon or treatments.  Please email me at [email protected] or message me on Facebook at www. Facebook. Com/jakeleerealestate


I am also looking for other long time survivors of an anaplastic astrocytoma. I have had no lint term effects. . But I am curious what the potentials could be.  






  • I_Promise
    I_Promise Member Posts: 218 Member
    Thank you for sharing your story

    It is comforting to read about someone who has beaten this for 12 years. My sister just passed the two year mark (AA garde 3) and she does not have any long term deficit, graduated from her PhD and now juggles two jobs and an active social life. 

    Sometimes the tumor does not come back. And the longuer you go before a reccurence, the better the prognostic. It looks like you are heading to have a long long life. All the best,