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Update 8 years out: Anaplastic Astrocytoma; read if looking for hope.

I_Promise's picture
Posts: 218
Joined: Aug 2011

For anyone looking for hope, I leave (infrequent) updates about my sister. I know I read so many post and journal articles looking for data about long term survival when she was first diagnosed. She was diagnosed with an anaplastic astrocytoma (grade 3) brain tumor in August of 2011 when she was in her late 20s. 

Chemo, 2 surgery, radiation, more off label chemo, a good lifestyle (mostly vegetarain). 

She travels the world; work full time, doing well. She is healthy. 

You can beat the odds. 

Posts: 10
Joined: Oct 2014

 I am so happy to read that your sister is still doing well!  She was on my prayer list for a long time, and thank God she is still still doing well! I was diagnosed in August 2013, and I found this discussion board and you and several others gave me so much hope. I am now six years out and doing well. I have my MRI coming up in early November, I’ve been blessed to have very few complications.  I was even able to have a baby after my diagnosis. Unfortunately, the first pregnancy after my diagnosis was a miscarriage, and then I lost an infant to preterm labor. While I was grieving, I got pregnant again and I now have a happy healthy six month old daughter. I was diagnosed with a brain tumor exactly one week after I gave birth to my first child.  It was terrifying to have a newborn and to find out that I had an anaplastic astrocytoma in the same month. Your posts gave me hope and comfort in a very bittersweet time. Bittersweet because I had this perfect little baby in my life, but I had a doctor telling me that I’d be doing good to live five years. That was terrifying. The same doctor that said five years was good told me that 2 to 3 years with more likely. Needless to say, she did not become my treating oncologist. I found somebody with a little bit more confidence in my survival! Is not good for the soul to stay with the doctor that’s already digging your grave. It was devastating to think of my child growing up without his mother. I always thought my newborn would be an only child, but as the years went on with no complications I decided I was living my life out of fear and still had a strong desire to have more children. My son and daughter are five years apart, and both are very healthy. I unknowingly had the tumor growing in my head while I was pregnant with my son, and when I was pregnant with my daughter  I was taking medicine for the secondary diagnosis of epilepsy from the brain tumor.   I had pre-conception consultations with high-risk obstetricians, Nuro oncologist and neurologists and my regular treating oncologist. I did my homework, but I also always looked for the survival stories on here to give me hope.  I needed your  experiences of survival, and even thriving, to help me get through my treatments. I’m so thankful! And I’m so happy to see your post!  Thank you for leaving your  experience here.  I think it gives hope to more people than you will ever realize! 

I_Promise's picture
Posts: 218
Joined: Aug 2011

I don't know when you will see my response, since I came back two years later to finally read yours. I am so so so happy that you are doing well and that you are seeing your children growing. Thank you for your wonderful  long message. My sister is now learning figure skating this year. 😀

AA3SurvivorNat's picture
Posts: 2
Joined: Aug 2021

I just wanted to say hello to a fellow "Brain Sister" who is also a Longterm Survivor who shares positivity just like I try my best to do even on the days I long to be the person I was before this diagnosis!! Keep up the good work !!

Posts: 1
Joined: Sep 2021

My 10yo was recently diagnosed with diffuse astrocytoma grade 2. Underwent surgery in Aug but they weren't able to removal all the tumor on her left frontal lobe due to the remainder of it's location leading to the base of her brain. Oncologist decided on a watch and wait approach with her having a MRI scheduled in Nov looking for possible growth of the remainder of the tumor in her left frontal lobe as well as the base of her brain and her entire spine for possible growth. My husband and I decided to seek a second opinion from St Jude and we're just waiting on their thoughts for treatment once they receive her records from her current oncologist and neurosurgeon. Her seizures are back and she's finally scheduled to see a neurologist in Oct for another EEG after my persistence about the referral since her surgery in Aug. I have days of wanting to scream, days of pure anger and days of sadness. What gets me though is my 10yo. Children are very resilient. 
With all of that said, your story of resilience and your years of remission is giving me hope for my 10yo. I thank you for sharing your story bc it truly helps and gives others hope.🙏🏾

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