Trista’s Story

Low-grade Osteosarcoma at the skull (orbit)
Age at Diagnosis: 22
Date of Diagnosis: 2003
Location: Oregon

Diagnosis: During the summer of 2003 I was experiencing blurry vision in my right eye and minimal swelling. I thought that I was having reactions from my hay fever but my parents suggested that I go to the doctor “just in case.” I was scheduled for MRI and CT scans to see what was happening internally. The results were shocking and devastating; I had a small tumor growing near my sinus and right orbit. The tumor had been pushing on my eye which was causing the swelling and blurred sight. After reviewing my scans the surgeon told me that it most likely was not cancerous. I was told that I would get the results 2 weeks post-surgery. It took over a month for them to find out that the tumor was in fact cancerous (Osteoblastic Osteosarcoma) and that I may need additional treatment. I flew from Oregon to M.D. Anderson in Houston for second opinions (since Oregon did not know how to treat my type of cancer). The doctors at M.D. Anderson told me that I should monitor the area every 3 months with CT scans and they were hopeful that it would not return. However in March 2005 I went in for one of my scans and had found that my cancer had returned. I was beside myself and inconsolable. I had another surgery to remove the growth once again. During my surgery the doctors found that it had spread much more than first anticipated. I would have to have another surgery to remove the correct margins, my right eye, and all surrounding tissue. Not only would I be fighting the cancer but the permanent disfigurement that would follow. I was afraid of what my life would become after that surgery but I decided to continue to fight. And I still am.

Treatment: I have had 3 major surgeries to date (Oct. 2003, May 2005, Aug. 2005). The first two involved removing the tumor in the right orbit of my skull. The third was the removal of the remaining tumor, meeting the margins, resecting my right eye and surrounding eye tissue. I was told that chemo and radiation would be more detrimental than helpful to my specific situation and the only way to get rid of the cancer was surgery. My first surgeon was very reassuring and made me feel like a living being. I have a horrible relationship with my last surgeon. He makes me feel less like a human and more like patient number such and such. He had no concern whatsoever for how I would feel or deal with life after this traumatic surgery. He basically told me to get over it and deal. I have since canceled all appointments with him. What is most upsetting is that he came so highly recommended. Right now I am back to monitoring it with scans; however I have not yet had the courage to do so.

Recovery: There were complications with my last surgery so I still have open wounds. I will need to have between 2-3 more surgeries to close them. I was never told that this was even a possibility, so I am constantly frustrated with the painful daily bandage changes. Now that I have monocular vision I no longer have depth perception which is tough. Hiking has proven to be a bit of a challenge but it’s not enough to keep me from it. I am also blind on my right side which is taking some adjustment.

Life now: Right now I am awaiting June so that I can finish school. I was in the middle of my master’s degree when my cancer resurfaced. If all goes well I will be done in December. The one thing that has kept me going is all of the support and encouragement from family and close friends. My boyfriend especially…he has shown me that unconditional love is possible (even at 23, who knew!!?!?). Everyday presents a new challenge but I’m just trying to take it moment by moment. And that is all anyone can ask for.

Thoughts and hints for new patients: It is okay for you to cry, scream, be numb, mourn, and grieve for what you have lost. But it is also okay to laugh, smile, and celebrate all that you have overcome and gained.