My Cancer Journey

My Cancer Journey

If you follow me on social media, you are probably aware that I was diagnosed with cancer back in January. I am fortunate to be receiving excellent care and my prognosis is good. It has been a wild ride, though and I have an update for you.

When I was first diagnosed, my doctor told me that I had ovarian / fallopian tube cancer. To keep things simple, I said publically that I had ovarian cancer since ovarian / fallopian tube cancer is a mouthful. But, it turns out that I don’t have either of those – I have uterine cancer!

What I didn’t realize when I started chemo and when I was filming my videos on ovarian cancer awareness was that the organ that they “blame the cancer on” is largely a guess based on what is statistically most likely.  But they can’t actually tell by looking at the cancer cells under the microscope where the cancer originated.  The type of cancer that I have most often originates in the ovaries or fallopian tubes.  My symptoms overlapped perfectly with ovarian cancer and the cancer in my uterus was not evident on the CT scans that I had prior to surgery. It wasn’t until after surgery that the pathologist determined that given the growth pattern of the tumor, the cancer started in the endometrium of my uterus. So in rare cases like mine, the diagnosis changes after surgery.  The news that I had uterine cancer really threw me for a loop at first, but once my doctor and her medical team explained the situation to me, I felt a lot better. Nothing changes in terms of my chemo treatments, and thankfully, I have been responding well.

Even though my diagnosis changed, I still feel strongly about raising awareness about gynecologic cancers. I couldn’t believe how challenging it was for me to get a diagnosis and I wanted to share my story in the hopes that it helps someone now or in the future reach a diagnosis sooner rather than later.

Given that cancer in someone my age (42) is incredibly rare, I bounced around from doctor to doctor in search of a diagnosis for months. (2.5 months to be exact) That felt like an eternity to me since I was super uncomfortable and at times in a lot of pain.  I went from my gynecologist, to my primary care, to a GI specialist, back to my gynecologist, to a different gynecologist (that’s a whole other story), and finally onto my oncologist at Duke. It was quite the odyssey.

The symptoms that I experienced looked more like a GI problem. The first gynecologist that I saw did an ultrasound and didn’t find anything unusual so she suggested that I go see a GI specialist. The funny thing is, even though I have uterine cancer, my symptoms looked more like the symptoms of ovarian cancer. Many people with ovarian cancer have a similar story because the symptoms can be mistaken for GI problems.

Here are the symptoms that I experienced: 

  • Bloating – let me tell you, when I first noticed the bloating, I looked about 3 or 4 months pregnant.  But by the time I saw the oncologist, I looked about 6 months pregnant.  That bloating was caused by something called ascites, or fluid build-up in the abdomen.  At that first visit to the oncologist, I had 2.5 liters of fluid withdrawn from my abdomen, which is the equivalent of 4 or 5 pounds of fluid.
  • Abdominal and pelvic pain
  • Changes to my appetite and digestion, particularly heartburn. I would get full really fast and at times it hurt to eat.  I would also get these burning pains around my stomach and when it was at its worst it felt like someone was scratching at my insides.
  • Frequent need to urinate
  • Weight Loss

Compare that to the symptoms of uterine cancer below…

Symptoms of Uterine Cancer:

  • Bleeding or discharge not related to your periods (menstruation) — over 90 percent of women diagnosed with endometrial cancer have abnormal vaginal bleeding
  • Postmenopausal bleeding
  • Difficult or painful urination
  • Pain during intercourse
  • Pain and/or mass in the pelvic area

I had a few of the symptoms of uterine cancer, but I didn’t have the most common symptom, which is irregular bleeding. The thing to underscore here is the importance of being aware of your own body and paying attention when your gut tells you that something isn’t right. In fact, in my next blog post, I will discuss how trusting my instincts and not giving up on a diagnosis very likely saved my hide. 😟