So let me tell you what I know about my cancer. I’ve researched this diagnosis for months, spoken with two teams of oncologists from two universities, received reports from 4 different pathologists, and I still have many questions. Most of the statistics I will mention have come from the American Cancer Society, or other scholarly journals on the subject, as well as my doctors.
I had a Placental Site Trophoblastic Tumor which is a type of Gestational Trophoblastic Disease. GTD encompasses many kinds of tumors and cancers that all, in some way, involve abnormal cells in the uterus. Though this is a gynecologic cancer, it only develops from cells that are involved in pregnancy (not just uterine cells themselves). Placental Site Trophoblastic Tumors are extremely rare and they develop in the space where the placenta attached to the uterus. When they form, it’s usually after a normal, full-term pregnancy or an abortion, but can result from a molar pregnancy as well. Sometimes, it takes years after a pregnancy for these tumors to grow or become detectable. Not all forms of Gestational Trophoblastic Disease are cancerous, but according to my oncologist, PSTTs always are. Generally, and especially if found early, GTD is very treatable, but the treatments vary based on the diagnosis and stage.
From my research, I’ve learned that Gestational Trophoblastic Disease accounts for less than 1% of all gynecologic cancers (think ovarian, cervical, uterine, etc). GTD occurs in approximately 1 in 1000 pregnancies, and most of those are molar pregnancies (but remember, not all of these are cancerous). Placental Site Trophoblastic Tumors account for less than 1% of all Gestational Trophoblastic Diseases. Hence the 150-200 cases recorded worldwide. So I’m sure someone can do the exact math on that, but all I really cared about when I read those statistics was “that’s an extremely small number – why me?”
Generally, the symptoms of this tumor can include missed periods, abnormal bleeding, and low beta-HCG levels (the hormone produced by the placenta during pregnancy and what pregnancy tests detect). My symptoms didn’t exactly follow the norm, which makes this whole thing even scarier, but more on that later.
Many GTDs can be treated with chemotherapy, some require surgery, and still others require both. Mine required surgery and hopefully I won’t need other treatment, for which we are very thankful. It’s strange to be thankful that all you needed was major surgery to treat cancer. It still feels completely surreal. If you want to learn more about Gestational Trophoblastic Disease and/or Placental Site Trophoblastic Tumors (because I obviously haven’t scared you enough), I would suggest visiting The American Cancer Society’s website on the subject – it was a very helpful resource for me.
Very bluntly, I hate this diagnosis. I hate that I grew this amazing organ during pregnancy that kept my baby alive and thriving, and then it betrayed me afterwards. I hate that I have spent the past four months of my life thinking about some piece of this every single day, instead of doing all the other things my family and I thought we would be doing. But I’m also proud of how we have handled it. I’ll go into more detail on how we got here, but I’m proud of the way I advocated for myself and for my family, I’m proud of the decisions we have made, and I am proud to be part of a family that came running when I needed them most. This entire process feels like it has been one piece of bad news after another, but looking back now, I realize that wasn’t exactly true – we got a lot of encouraging news along the way and we just had to slow down and take it one step at a time to truly realize it.
Life One Step At A Time 