I Saved My Life By Listening To My Body
All I heard over a 12 hour period was that I was pregnant and/or miscarrying across several floors--from the ER to Labor & Delivery to Telemetry--until they tried to send me home. The last remark I heard before an actual diagnosis was that I was having a heavy period. As I was hemorrhaging. We're talking two buckets full, nearly-passing-out, horror-movie stuff. Give me a break.
Repeatedly, I refused their explanations for my four-month-postpartum intermittent bleeding. Repeatedly, I refused to go home. I was NOT going to bleed to death in my bed. I knew something was wrong and that there was something on the right side of my uterus; my regular OB-GYN and I saw it the afternoon before. It appeared as a perfect grape-bunch image, hanging off my uterine wall. He advised my husband and I to go to this hospital early the next morning.
I had other odd suspicions during my pregnancy, too; like getting regular contractions from around 25 weeks on, like a rise in hormones that caused a negative yeast infection test but continuous itching, like losing more blood than usual at delivery-- which was in the back on the ambulance, as we didn't make it to the hospital due to these ongoing contractions.
Then, bleeding for 8 weeks postpartum. At my 4 week postpartum checkup, it was passed off as being a result of my age. " I had about two weeks off from bleeding until it started again, with what felt like menstrual cramping. After a few weeks of suspicion, I finally had a small hemorrhage and then passed a flat, grape-like clot. It was then that the OB-GYN called me in, stat.
I knew that I was not crazy, I was not a hypochondriac and I was not overreacting. I answered all of their mental evaluation tests correctly as they tried to pick my brain. I felt like a subject to an experiment. They had no explanation to offer other than telling me that it was the result of being a woman with excessive vaginal bleeding. I was a woman who recently had a full term pregnancy, and had given birth just four months prior; a woman who was not just having a menstrual period and had been breastfeeding her newborn; a woman who had walls in her uterus as thick as a woman who was six months pregnant, but with no baby.
Their hands were tied as they passed me around from floor to floor until, finally, I ended up getting a diagnosis: choriocarcinoma placenta cancer, a derivative of the pregnancy-related disease gestational trophoblastic neoplasm disease (GTD). This pregnancy disease and its cancer are only "briefly mentioned" in med school, as several in the medical field have told me.
I know that, with so many diseases and cancers in the world, the most common ones are the ones that get more attention, studies, research and extended treatment. This sets a huge gap between the common diseases or cancers and the rare ones. And as a result, many misdiagnoses, which happens far too often. Many expect doctors to be miracle performers, but we forget the term "practicing medicine" means exactly that. Doctors learn as they go along in their career. It's been this way from the beginning.
Doctors are also human. They make honest mistakes. The complexity of science, health, and disease is beyond more than most of us know or understand. Unfortunately, it takes survivors like myself and their loved ones of those lost to raise their voices for awareness of these less common, but all too real diseases.
After my diagnosis, I learned that have I had lost an undeveloped twin. Yes, my newborn daughter was the surviving twin of a complete twin molar pregnancy.. High bCG level is a clear indicator of this disease or its cancer. I remember one of the doctors popping in as I was having this near-death hemorrhage, and it was like a light bulb went off in his head. He ordered bCG blood draw stat. For your reference: an hCG level of anything above 25mlU/ml is considered positive for pregnancy. As it turns out, my levels were over 221,000mlU/ml. I ended up with lung metastasis in my right lung (metastasizes from uterus to the lungs to the liver and finally the brain). It is now believed that the choriocarcinoma had been fully gestated at around 25 weeks into my pregnancy. My baby and I are very fortunate to be alive.
My advice to you after all of this medical turmoil is to be your own advocate. You know your body and you know when something is wrong. It doesn't matter what the greatest doctors tell you because if I had listened, I would not be alive today. Choriocarcinoma is very fast and aggressive moving and my time was very limited, if I had not bled to death first. Unfortunately, many are not taken seriously and do not have a second chance. Some are questioned with their mental capacity, even threatened with mental health disorders, to the point where they lose their ability to advocate for themselves.
Stand up for your body, your health. Be your own advocate. Do your own research. Seek out others with your situation. With social media, this can be very easy and so beneficial. Get second, third, even fourth opinions. The old saying, 'You're better to be safe than sorry," fits very snug. It could save your life.
Photo courtesy of Tomo Nogi.
Cindy Lupica is a wife, mother of four, and survivor and advocates for Choriocarcinoma & Molar Pregnancy Awareness. She is also an advocate for the Choriocarcinoma Research Fund at Brigham & Women's Hospital, where you can donate to here. You can connect with her on IHC under the username CindyLupica.