September 09, 2014
My bladder cancer journey
BY Susan Dixon Woods
In June 2009, I noticed a tinge of blood in my urine, but I quickly dismissed it because I had bigger fish to fry at the time. My husband's business had suffered financial losses, and we had just sent our daughter to a long-term treatment program across the country. I never thought it could be a bladder cancer symptom.
In August, I finally made an appointment with a local urologist, thinking I had a mild urinary tract infection (UTI). I went alone with the intentions of returning to work after the appointment. The urine specimen they collected showed traces of blood, but no bacteria.
A cystoscopy was performed and revealed a tumor at the dome of the bladder. I calmly asked, "Could it be cancer?" The doctor responded, "It likely is."
My bladder cancer diagnosis and treatment
A few weeks later, I underwent a transurethral resection (TUR), a surgery in which the tumor is scraped from the bladder, then a partial cystectomy. Both confirmed that I had urachal adenocarcinoma, a rare type of bladder cancer. It represents less than 0.5 to 2% of all bladder cancers, and research showed survival at less than a year.
All I could think about was that I could not die because my family needed me. Yes, you could say I was a control freak and thought the world would not go on without me.
I was referred to a local oncologist who said he had never seen this cancer in his 26 years of practice. In our conversation, I mentioned a previous X-ray that showed a spot on my right lung diagnosed as a granuloma, an inflammation of the tissue. The oncologist ordered a PET scan and then a biopsy of my lung.
Because there was no protocol for treatment, he referred me to MD Anderson.
The biopsy report came back the day I arrived at MD Anderson for an appointment with Padmanee Sharma, M.D., in Genitourinary Medical Oncology. She told me I have stage 4 bladder cancer with distant metastasis to the lung. She drew a bell curve with 6 months at the top showing the average survival rate. I was offered the opportunity to participate in a clinical trial under Dr. Seifker-Radtke, and my thought was, "What do I have to lose?"
Why I haven't given up
I took many chemotherapy drugs off and on, both as an inpatient and outpatient. I experienced all the common side effects, including hair loss. I had radiation and later a wedge resection to my right lung.
In May 2012, it was a pleasure to hear the words "in complete remission," even if it lasted only a little more than a year. In September 2013, a CT scan revealed the airway leaving my right lung was blocked, a portion of the remaining lung collapsed, and new tumor growth outside the lung in the chest.
A bronchoscope confirmed we were again dealing with metastatic disease. We tried chemotherapy until my immune system was too compromised, then transitioned to a maintenance drug.
In August 2014, CT scans showed the tumors growing, and I was taken off of all treatment. The next step is to see if I qualify for a new phase I clinical trial that targets a specific mutation identified in my tumor tissue. Neither my oncologist nor I are ready to quit.
Through this journey I have learned much about life and myself. Each day I put on my bright lipstick and earrings and charge forward, not allowing cancer to take life from me. I work, I play, I relax, I meditate. I seek balance in my life.
Oddly enough, cancer has been a blessing. It brought me to my knees to find peace within through surrender. I learned that the material things in my life mean little, and that my faith and my relationships mean everything.