Be Your Own Advocate

The date was February 1st, 2014, a date my husband and I will never forget. I had given birth to our fourth child just four months earlier. We thought it was a healthy pregnancy, despite regular contractions around 25 weeks on. We were on the twelfth hour of being at the hospital, originally checking into the ER as my regular OBGYN advised. Then we moved up to the fourth floor, Labor & Delivery. As I lay on the half bed, my husband watched as I began a never-ending massive hemorrhage — so much, that I nearly lost consciousness. I remember my sight becoming blurred as my hearing faded in and out. The RN ordered a large bucket, then two more to catch the excessively large clots, while still insisting that it was just a “heavy menstrual period.” But uncertainty lay on her face. It indeed was not, and I refused to be discharged to go home and bleed to death.

After earlier tests in the ER and on the second floor, all the doctors and nurses still reassured me I was either miscarrying or newly pregnant. They wanted to discharge me. I refused each time, because deep down I knew there was something wrong. The day prior, my OBGYN did a vaginal ultrasound and we saw the grape-like image on the screen. Something was there.

After I was given oxygen and laid with my head lower than my feet, I was able to regain full consciousness and sit up. It was then another floor doctor had come in and ordered labs for a b-hcg draw. Within 30 minutes, we were facing four various doctors, telling us I had choriocarcinoma from a complete twin molar pregnancy that resulted from our newborn’s undeveloped twin.

What? I only briefly knew of this rare, placental cancer from the book, “What to Expect When You’re Expecting.”

I was admitted late that night after I tried to breastfeed my baby one last time. The rest of the night until early morning consisted of tests, from a CT scan, to an MRI, to a florescent contract glow agent CT.  I was alone and scared.

It was then I was told it hadn’t metastasized to my brain, luckily, but possibly to my right lung. My pregnancy hormone, b-hcg levels were extremely high, over 221,000.

Choriocarcinoma metastasizes from the uterus to the lungs, liver, and finally the brain, very aggressively and fast. It is very responsive to chemotherapy IF caught in time. I was between stage II/III, FIGO Score 6.

A picc-line was inserted the following morning and I was given my first needed blood transfusion in prep for chemo. Everything had happened so fast that it was hard to comprehend it all.

My oncology team believes the choriocarcinoma was fully gestated around 22-27 weeks into my pregnancy, around the same time I began getting regular contractions. The only other symptom was intermittent postpartum bleeding and passing round, flat clots. Other symptoms can include regular pregnancy symptoms, menstrual or pelvic pain, increased or high b-hcg levels, coughing, shortness of breath, dizziness, blurred vision, headaches and even seizures. I had regular pre-natal care and addressed my OBGYN regularly. And still, nothing was detected with exams until four months after giving full term birth.

Which is why I stress, be your own advocate.

I began weekly Methotrexate chemotherapy February 4th, and after four rounds, learned it wasn’t working, due to resistance. My b-hcg levels weren’t dropping quickly enough. I was then put on aggressive “5 agent chemotherapy” known as EMA/CO. I had week after week of infusions, with a total of 12 total rounds. Going through the treatment was very hard. And there were many times I didn’t think I could continue on, looking death in the face. I was neutropenic most of the time (low or no white cells) and we learned to give Neupogen shots at home in my belly. I had many complications, including needing another blood transfusion, getting a UTI, and being rushed to the ER a few times for fever.

After inpatient chemotherapy, I was instructed to not pass on any bodily fluids, like kissing, especially with my newborn, due to my toxicity levels from the chemotherapy. Most of my days were spent sleeping in bed, snuggling my newborn and listening to the noises slipping by of my children and husband.

What is molar pregnancy and placental cancer (choriocarcinoma)? A molar pregnancy results from the disease gestational trophoblastic neoplasia and not all turn malignant like mine did. Basically, the abnormalities begin at fertilization. In a partial molar, two sperm fertilize one egg, leaving an abnormal fetus that will either naturally abort or have to be terminated. In a complete molar, one sperm fertilizes one egg that has missing DNA/chromosomes, thus stopping at the placental formation causing abnormal placental cells. In my case, I had two eggs fertilized; one being our healthy baby girl and the other a complete mole egg. This type of case is rare, especially with our baby surviving. She will be three years old this September and is still healthy.

One key change I would like to see is more awareness. Since my own diagnosis, I’ve been a strong advocate, raising awareness through Facebook support groups, as well as my own Facebook page, Choriocarcinoma & Molar Pregnancy https://m.facebook.com/choriocarcinomaandmolarpregnancy/ and others to further reach the public.

I realize others have not been so fortunate, and try to help their families in any way by providing support for their loss. I’m in contact daily with hundreds of other women, some new cases, each week.

I also advocate and raise funds for Dr. Goldstein’s exclusive Choriocarcinoma Research Fund at Brigham’s in MA https://giving.brighamandwomens.org/choriocarcinoma

I give credit to my oncology team and Dr. Goldstein’s fast acting, life saving treatment, but most of all, to God for sparing me. It was hard to explain to my children, especially my 4-year-old at the time, that I may die, and why all my bodily hair was gone. He was devastated to see my eyelashes and eyebrows fall out. It’s not the easiest to talk of death to young children.

The anxiety of this journey and being away from my children was just unbearable. I also suffered PTSD and became unknowingly dependent on Lorazepam as a result of using it as pre-chemo meds every week. I am now free from these bondages through faith and prayer. I still have the normal “scan-xiety” and fear when a fellow choriocarcinoma sister has recurrence or loses their fight. I am two years cancer-free now and will ne two years chemo-free this July.

I now live with chemotherapy side effects, such as premature menopause, bone pain, low bone density, neuropathy, chemo brain and vision loss, to name a few. I also suffer from nerve damage from the picc-line.

My advice is to listen to your body, regardless of what a doctor may tell you. A simple home pregnancy test can pick up any detected b-hcg levels.

Be your own advocate, because no one else will.