My name is Lisa and my mother had gist all throughout her abdomen. I think blocking the blood supply to her liver causing the liver not to function properly. She became very irate. I thought it was due to her stopping her anti-depressant meds. She has been taking them for 14 years since my father passed away. She was admitted into the psych. ward at a hospital on Long Island, NY. I knew something was not right because her behavior was not one of my mothers. They kept giving her psychotic meds, telling me she had a psychotic break. I fought with the hospital for five weeks until they realized her liver was not functioning. She finally was transferred to a medical floor where they told us she had a tumor in her abdomen that was quite large. They took a biopsy and told us it spread to her liver. After finding out she had cancer they told me there was nothing they could due and she died a week and a half later. We later found out through the autopsy that it did not spread to the liver or any other organ. My mother died may 3rd 2007. I was 8 months pregnant and had a one and a half year old daughter, Alex, when she died.
Alex was the world to my mother. My mother did have abdominal discomfort years before she died. She went to every doctor possible, and no doctor found anything. She even had a hysterectomy because of the discomfort in her abdomen. If my mothers GIST was found sooner, maybe she would be taking Gleevec( a drug used for this type of cancer)and be alive today to see her grandchildren grow. But she is not because GIST is a cancer, that is rare and there is not a lot of awareness of it.
I went to the doctor the other day for a checkup and when asked any new family history… I said ” My mother died a year and a half ago of a very rare type of cancer…called GIST.” The doctor had no clue what it was and asked me what it was! How sad! I am not a doctor and a doctor is asking me…
I am telling this story because I dont want what happened to my mother to happen to anyone else. I miss my mother more than words could express, but every new person that knows about GIST makes me a little happier.