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 6/7, high risk, possible lung metastasis (later scans found it was). 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 17-29 weeks into my pregnancy (I began to round it off to around 25 weeks). 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 begun a single chemo the next day. I had various scans of my lungs and brain. After four weekly outpatients, my b-hcg levels were not lowering quickly enough, showing I was resistant; they actually rose higher. I was then put on a bi-weekly five agent regimen. This consists of inpatient hospital stays for 3-4 days with two weeks worth of chemo. The following week was alternating outpatient chemo, two of the remaining cocktail. Every week was rotating. I ended up with 12 total rounds, 6 1/2 months worth of chemo. During my journey, I needed two blood transfusions, magnesium, and was neutropenic most of the time.
I am cancer free now. My daughter is healthy. 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.
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.