Brain Tumor Survivors :: Their Stories

June 15, 1994. Grand mal seizure. My eyes rolled. I turned blue. Stopped breathing. My husband was terrified. He thought I was dying.

Rushed to ER. Woke up in a wheelchair. Nurse, in my face, loud: “Do you know where you are?” Hospital, I knew. “Do you know what happened to you?” Not a clue. Carsick from the frantic car ride, still fuzzy from the seizure. Stood up and nearly fell over.

Waiting on a gurney in the hallway. Young doctor stops by: “We think you have one of three things: a brain infection, a brain cyst, or a brain tumor - most likely a brain tumor.”

I am Shannon O'Brien. Self-advocate and brain tumor activist. 26 years old at diagnosis, now 40 and a 14-year brain cancer survivor.

At the time all this took place, I was living in Seattle, working as food server at a Japanese restaurant. No medical insurance. The hospital decided to discharge me. I had received no tests or treatments of any kind. Luckily, my Aunt Molly was there. She went to find a doctor. Bless the luck of the Irish, the doctor she found turned out to be world-renowned neurosurgeon Dr. H. Richard Winn. He declared my case an emergency, and five days later performed my emergency 8-hour brain surgery, successfully resecting my huge tumor, 100 percent.

I remember waking up in my hospital bed. Music on the little radio, cello and piano, my two favorite instruments. My life flew before my eyes. I just cried. It all came out. I felt the time ahead would be the toughest time of my life. And it has been ...

Diagnosis: oligodendroglioma, grapefruit-sized, right frontal lobe. Radiation therapy (external beam focal ), six weeks, a lifetime dose. I went through rehabilitation at UWMC, re-learning to walk and talk all over again. My memory of this part of my journey is kind of patchy. I did have to stop working and go on welfare, then Social Security disability. Marriage ended. Between the tumor, the seizure, the surgery and radiation, I now had a lot to cope with: depression, short-term memory loss, headaches, fatigue, pain. Somehow I began putting my life back together. Six years went by. I dared to hope the nightmare was behind me.

But no. May 2000. My first recurrence, after six years. Same diagnosis. Brain surgery again, June 2000. Again, 100 percent resection by my brilliant Dr. Winn. But my tumor had “progressed” - anaplastic oligodendroglioma grade 3, a more aggressive tumor. My hero, neuro-oncologist Dr. Alex Spence, now advised chemotherapy. I completed 12 grueling months of Temodar between 2000 and 2002. I decided to quit after one year of Temodar because it was killing my spirit.

After four or five years of clear MRIs, a confusing period followed in 2004-2005, with something showing up on my MRIs that my doctors thought might be from the late term effect of radiation treatment ten years earlier. I also got second opinion consultations with several other doctors, but the diagnosis remained uncertain. Finally in May 2006 they confirmed. My second recurrence. Since I was having MRI scans every month or every other month, it was diagnosed when it was still relatively small. Both UWMC and UCSF recommended radiosurgery for this recurrence, but Dr. Del Maestro recommended conventional surgery. My medical team at UWMC agreed, and I had my third brain surgery on May 18, 2006. By this time, my beloved Dr. Winn was no longer with UWMC. Dr. Silbergeld performed my surgery. He said he performed a gross total resection of all visible tumor. I went through another year of Temodar, completing that course of chemotherapy in June of 2007.

September 2007. Third recurrence. My MRI showed a large recurrent tumor with some parts enhancing. The UWMC tumor board considered my new tumor inoperable. This terrified me! We sent my scans out to Rolando Del Maestro in Montreal Canada, Mitch Berger at UCSF, and Keith Black at Cedars-Sinai Medical Center in LA. Dr. Del Maestro said “operable.” Dr. Berger said “operable.” Dr. John Yu ( Keith Black's Co-Director at The Maxine Dunitz Neurological Institute at Cedars-Sinai in LA) said “operable.” Cedars-Sinai offered a trial including surgery, Gliadel Wafers, and dendritic cell vaccine treatment. I chose Dr. Yu and Cedars-Sinai.

I traveled from Seattle to Los Angeles and underwent my fourth brain surgery on October 17, 2007, performed by Dr. John Yu. The nine-hour surgery was exhausting. The good news: Dr. Yu was able to remove all the malignant (enhancing) areas. Unfortunately, there was a shadowy area in the motor strip he could not remove, but he said it was not a big problem, that it looked like low grade. The pathology showed mixed oligo. I found some of this frightening. Before this, I had always had gross total resection (all visible tumor removed), and my diagnosis had always been pure oligo. Also, during the weeks after surgery, I found the Gliadel Wafers made the recovery from surgery much slower.

Then began the vaccine trial. Once they determined I was eligible for the trial (based on recovering enough tumor tissue), they began with leukapheresis (white cell collection) on December 5, 2007. Then they prepared my vaccine, using my tumor cells and my white cells. The vaccine was administered three times at two-week intervals: December 21, 2007, January 4, 2008, and January 18, 2008. When I went back a month later for my follow-up MRI after the vaccine trial, on February 27, 2008, I received the best possible news -- the MRI showed no visible tumor! All gone, no tumor left in the motor strip. Of course I was thrilled.

My doctors at Cedars-Sinai recommended follow-up chemotherapy treatment, which can be administered by my “home team” at UWMC. At the time of this writing (June 2008), my latest MRI showed a small spot. My case will go before the tumor board at Cedars-Sinai, and I will face a treatment decision again.

The present treatments for brain cancer are not curative. We need new and better treatments. More funding for research. Legislation to improve the research system and to provide better access to care, treatment, and rehabilitation services for all brain tumor survivors.

My tumor was a MENNIGIOMA, behind the right eye, ilt was tangled up in the OPTIC nerve. I was diagnosed with it when I had a Gran Mal seizure on 4/26/07 and my surgery was 5/08/07. The surgery was successful; the tumor was 100% removed.

I still have small seizures and will take seizure medicine the rest of my life. I have to put drops in my right eye the rest of my life. My nerve was damage; it does not produce tears. These are just a couple of small side effects I will live with the rest of my life. I am very lucky and Thank God everyday that I survived having a Brain Tumor. ROBIN

Sally is the mother of three children and two stepsons from my previous relationships. She worked three jobs. One full-time that was very stressful and two part-time jobs. I think she worked them because she couldn't keep still.

On June 12, 2008, she had a full blown seizure that just devastated her. It changed her life, to put it mildly. The doctors at our local hospital had tested her for everything from AIDS to bad blood. All came back negative. Three weeks passed through this process. Finally, they had exhausted their resources and we were referred to Dr. Quinones at Johns Hopkins, where two tumors were discovered in the left portion of her brain, the motor cortex and was similar to a barbell in shape. Surgery was performed immediately. The doctor was able to remove all of the tumor.

After testing, it was determined that Sally's tumor was a "Glioblastoma Multiforme" Stage 4 cancer. After surgery, we proceeded with six weeks of chemotherapy and radiation combined. This was very difficult on Sally. She, then, took a four week break and then started back on a one year program of chemotherapy at a very high dose. The doctor said that if she survived that treatment she would have a better chance of survival. In December of '08, she seemed to be declining physically. She had another MRI done in Baltimore and they discovered a change and needed to go back in again. Sally had a second surgery on January 29, 2009. Since that surgery, daily activity has been a struggle, since she has all but lost the use of her right arm and leg. Her life change from working three jobs to not being able to do for herself. This has really taken it's toll on her mentally. She has continued her treatment and one more to go to finish out the year.

She is doing better with the support she is receiving from her family and friends. We don't know what our future holds. If we all try to live with this understanding that life is truly precious, we can be better than we are.

SURVIVORS STORIES

Shannon OBrien's Story