r/braincancer • u/camelontherun • Dec 13 '19
STICKY: Self Diagnosis Posts
The intent of this /r/ is for people who have been diagnosed, are in treatment, or know someone that has a cancer or tumor to come and get support or chat.
Coming to this /r/ to self diagnose is not helpful. It is impossible to diagnose a brain cancer or tumor without an MRI so asking strangers about your general symptoms is not beneficial for anyone. Thanks.
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u/ala_kano May 09 '25
I was diagnosed in January 2020, and now it is May 2025 (5 years and 4 months).
Initially, I was diagnosed with Grade 2 Astrocytoma, IDH-positive. Two years later, my diagnosis progressed to Grade 3 Astrocytoma, IDH-positive. I underwent proton radiotherapy in April 2022, followed by the standard chemotherapy with Temozolomide for approximately one year.
Seven months after treatment, I developed radiation necrosis. My oncologist informed me that necrosis occurs in about 20% of cases, although this rate can vary significantly due to the limited number of patient cases available for analysis.
I have been dealing with necrosis since that time. Treatment with Avastin was ineffective, but Hyperbaric Oxygen Therapy (HBOT) did provide improvement. After an additional year, I will (not yet) undergo another round of HBOT (hopefully by the end of May), hopefully reducing the necrosis by half again. However, I understand this won't ultimately improve my condition, unfortunately.
That summarizes my medical history up to now.