It's hard enough to express you've had cancer, but explaining a rare cancer is even more difficult.
Most patients automatically expect to hear breast cancer, colon cancer or bone cancer. When I say choriocarcinoma they ask, "What's that?" When they hear placental cancer their faces drop, almost in dismay, disbelief. Some even change the subject. Besides, it's a rare cancer, right? The chances of getting
it are slim, so why focus on it, why learn of it? Because this is a pregnancy cancer, the ‘I'm a man’ or ‘I'm beyond child bearing age’ or 'It won't happen to me' type of attitude can set in.
Is this the real way to perform basic human responsibility-- to turn away faces, lips closed? Rare cancers are just as serious as all other publicly known, media-pushed cancers. Some of these rare cancers have lower survival statistics, less available treatments, and can be very aggressive. Are these cancers treated any different than 'other' cancers? Do we get off any easier by the clouded disguise of rarity and hidden publicity? The answer is NO, by no means. How do I know? Because I am a survivor of a rare cancer from a rare disease.
I was diagnosed February 1, 2014 with rare and aggressive growing placental cancer called choriocarcinoma, a germ cell cancer. This is a type of gestational trophoblastic neoplasia disease or GTD. Not all molar pregnancies turn cancerous; most do not. Mine resulted from a molar pregnancy. Have you heard of this?
What about a more rare case: complete twin molar pregnancy? I got cancer as a result of my daughter's undeveloped twin. I had 2 eggs that were normally fertilized, one was my healthy daughter, the other was her undeveloped twin. This twin egg was missing chromosomes or DNA, therefore unable to form the full placenta, thus turning into abnormal cells that turned malignant. I wasn't correctly diagnosed until 4 months postpartum. I was Stage II/ III, FIGO Score 6, high risk, possible lung metastasis. My b-hcg levels (pregnancy hormone) were over 221,000.
I had massive vaginal hemorrhaging and menstrual like cramping. In my pregnancy, I only had regular contractions from 25 weeks on and vaginal itching (yeast infection test was negative). My oncology team believes the choriocarcinoma was fully gestated around 22-27 weeks into my pregnancy! I carried this aggressive cancer for almost 8 months without knowing. This alone is a miracle my baby and I are alive because it should've already metastasized from my lungs to my liver and brain within this time frame.
How was my cancer treated? Very quickly. Time is of the essence with this cancer. I was admitted that night, had a Picc-line inserted and begin single methotrexate chemo the next day. I had various scans of my lungs and brain. After four weekly outpatients, b-hcg levels were not lowering quickly enough, showing I was resistant. I was then put on weekly 5 agent regimen called EMA/CO. This consists of etoposide, methotrexate, dactinomycin (act-D) given inpatient for 3-4 days hospital stay and 2 weeks worth of chemo. The following week was outpatient with cyclophosphamide and vincristine. Every week was rotating. I ended up with 12 total rounds, 6 1/2 months worth of chemo. Because this chemo is so aggressive, I had to have 2 blood transfusions, took Neupogen shots every other week for days at a time since I was neutropenic most of the time, and also took magnesium pills.
I am two years cancer free now. My daughter will be three years old next month. Since my own diagnosis, I've been a strong awareness advocate since a lot of info was not available on the Internet. Dr. Jen Arnold from Little Couple also had a choriocarcinoma diagnosis from a molar pregnancy and had just finished up her treatments around my own diagnosis. The only other cases that popped up were two women that didn't survive, unfortunately. One brought public media attention while the other's mother is a fellow awareness advocate. You can imagine my own fears seeing this.
I may not be a celebrity backed with power of money and fame, but I do have the power as a survivor to keep pressing on. I have a Facebook awareness page and work directly with Dr. Goldstein’s team at Brigham and Women's Hospital in Boston, MA. They opened up their exclusive Choriocarcinoma Research Fund to the public with an official gifts page on their website as a result.
I have a Facebook support group called "Choriocarcinoma & Molar Pregnancy Awareness" and am in contact daily with hundreds of other women and their families from all over the world. I have others reaching out to me, some now coming forward with less fears of connecting and opening up about their situation and their loss.
Rare cancers deserve the honour, respect and public ear equally, if not more than known cancers. Our support group is small, funds and research minimal, but it's the few that have a big voice and the hearing public that can change this. Stand up, let your voice be heard for your survivorship, others behind you, and those in the future. It takes courage to speak of a personal tragedy but a willing ear to listen. I encourage it on both ends.