December 02, 2019
How I’ve lived with uterine cancer for seven years
BY Michelle John
I've always had to fight for my health. I had my left leg amputated at age 1 due to a birth defect, and I was born with the sickle cell anemia trait.
When I was 21, I watched my mom die from complications of sickle cell anemia.
I had open-heart surgery for a heart defect discovered in my 20s. Then, I had fibroid surgery six months later.
Up to that point, I'd been through a lot, so I was overwhelmed when I was diagnosed with a rare type of uterine cancer -- endometrial stromal sarcoma -- at age 28.
How my uterine cancer symptoms led me to MD Anderson
I was a Head Start teacher, and I knew something was wrong when I needed to leave my classroom frequently for restroom breaks. I was gaining weight, too.
In September 2012, I went to the emergency room for kidney pain. Doctors found that my urine was backed up into my ureter, the duct through which urine passes from the kidney to the bladder.
An ultrasound revealed a possible fibroid and smaller masses near my right kidney. Suspecting it might be cancer, the doctors referred me to MD Anderson.
My uterine cancer treatment
During my first appointment at MD Anderson, I met with gynecologic oncologist Dr. Pamela Soliman, who had the tumor biopsied.
The results confirmed I had endometrial stromal sarcoma, so Dr. Soliman referred me to sarcoma specialist Dr. Robert Benjamin.
Because the tumor was growing slowly, Dr. Benjamin monitored me over the next few months. Given the tumor’s size and location, surgery would be risky.
Dr. Benjamin put me on Lupron injections – a type of hormone therapy. I also began a clinical trial in March 2013, where I received 10 cycles of the chemotherapy drugs gemcitabine and taxotere.
Coping with side effects from my cancer treatment
I had to stop the Lupron shortly after I’d started it. I had a rare reaction to it, which damaged my optical nerves and weakened my vision. I now get annual eye exams to monitor my vision.
The chemotherapy was brutal, too. I started losing my hair, and I constantly felt fatigued. I took a five-month break from treatment due to low blood platelets.
Finding hope in a Phase I clinical trial
When I finally started chemotherapy again, I took Adriamycin. It wasn’t as hard on my body as the taxotere, but it wasn’t doing much to shrink my tumor.
Then, in 2016, I switched to the targeted therapy drug pazopanib and another chemotherapy drug, gemcitabine.
But the tumor was growing, and I was slowly getting worse. Dr. Benjamin believed an immunotherapy clinical trial would benefit me more. So, at the end of 2017, I was referred to Dr. Filip Janku for the Phase I clinical trial I’m currently on.
I’ve had some nausea, lethargy and neuropathy, but I rest and drink lots of water to help. My care team is helping manage my pain and other side effects.
I now visit MD Anderson every three weeks for CT scans, labs to monitor my progress and treatment.
Compassion and community put me at ease
I was devastated and terrified when I learned I had uterine cancer, but there's a vibe at MD Anderson that always makes me feel at ease. You feel a sense of community and warmth there even though you’re going through a difficult time.
I've spent countless hours in hospitals, and I can tell you that MD Anderson is special. Whether I am at the Texas Medical Center Campus or visiting my care team at MD Anderson in Sugar Land, I feel warmth and hope.
How I keep moving forward
It's been a long, difficult seven years since my cancer diagnosis, but I consider myself lucky. Every time I'm feeling down, I remind myself that others have been doing this longer than me. I'm lucky to be here, thanks to clinical trials.
After my mom died, my grandmother told me, “Life goes on, life keeps moving and you have to keep moving, too.” This helps me keep moving forward despite everything.
I wish life slowed down for us to grieve, but it doesn't. So, I just take it one day at a time and thank God for every good day and for what I learn from every bad day.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
I consider myself lucky.