My name is Amy, and I am 38 years old. Before May 23, 2013, I was in perfect health. And I expected to live a long life, at least until that all changed on July 3, 2013.
The Back Story
I was never an athlete, but I had taken up running the year before at age 36, and in that first year I ended up running 2 5k races, 2 10k’s, 3 half marathons and even completed the Chicago Marathon in 2012. On April 6, I finished another half marathon, and I had never felt healthier in my entire life. Other than getting my wisdom teeth removed when I was 16, I had never had surgery. Whenever I had to fill out a medical questionnaire, I was the one who checked “no” beside every condition listed. In fact, I’d never even broken a bone or had stitches. I was so healthy as to be utterly unremarkable in the view of any physician. Literally the only medical issue I had was an inability to conceive. Since the doctors could find no explanation in either my husband or myself, it was chalked up to “unexplained infertility.”
In March and April of 2013, I experienced a weird symptom – post-coital bleeding – that happened just two times, a full month apart. Nothing else was out of the ordinary (and there were plenty of other post-coital occasions in those two months without bleeding!), and I continued to feel great. The first time it happened, it was easy to not pay too much attention, but the second time I realized I should get it checked out. I scheduled my annual woman doctor visit for my pap test, which ended up being normal, just like always. However, because of my symptoms, my doctor wanted to do a biopsy “just in case,” though she was sure it would turn out to be nothing. I got the biopsy done and was told the results would be in early the following week. The next week I headed out on business trip, so I wasn’t too worried when I didn’t hear back right away.
By Thursday of the next week, I was at a conference and had stepped out to join a conference call. While on my call, I saw my doctor’s phone number pop up on the call waiting, but I was so convinced it was nothing that I let the call go to voicemail. I mean, I had a business call to finish first! When I checked the voicemail about 20 minutes later, it was a message from my doctor personally, asking me to call her. That had never happened before, as her nurse usually calls, and if I don’t pick up she’ll leave a voicemail telling me the results are normal and that she’ll see me in a year. Now my radar was on high alert, and I returned the call right away; it got worse when the receptionist put me through to the doctor right away. When she picked up, she didn’t mince words: the biopsy had shown invasive adenocarcinoma of the cervix, and that she was very sorry. She told me that she had arranged for me to see a gynecological oncologist that same day, and that his office was waiting for my phone call. She concluded the conversation by saying once again that she was so very sorry, and that she wished she were telling me in person so that she could give me hug.
The day was May 23, 2013, and just like that, my self image as a healthy person was obliterated. Still in shock, I packed up my things and left the conference. From the car, I called my new oncologist’s office to arrange the appointment. It was 11:30am, and they would see me at 1:00pm. Things were moving in warp speed, yet I was completely numb. Next I called my husband. He’s a worrier, so I was afraid he would freak out. I left out the scary sounding medical term I’d just heard, “invasive adenocarcinoma,” but gave him the rest of the story. Amazingly, he stayed completely calm, promising to cancel his afternoon commitments and meet me at home so that we could go to my appointment together. I will always be grateful for how he stayed strong when I was falling apart, especially since I have no doubt that he was at least as terrified as I was, and probably more so.
I vividly remember the first time we checked in at the Samuel Oschin Cancer Center at Cedars Sinai Hospital. In what feels like an orientation, they give you a glossy folder that reminds me of the old Trapper Keepers I had in school, except that the branding is much slicker. In spite of my fear, I was trying to keep it light as I clutched what I nicknamed my Cancer Kit, which I earned as a brand new member of the Cancer Club. We even got an escort from the front reception area to the special waiting room they have at the center. Welcome, Campers!
The whole day was surreal, but things got better as we met with the doctor. He explained that while adenocarcinoma accounts for about 15-20% of all cervical cancer cases, and like the more common squamous cell cervical cancer, it was still highly treatable. I was diagnosed as Stage 1B, with the primary treatment being surgery with a possibility of radiation if the cancer had spread to the surrounding lymph nodes. Chemotherapy was not used to treat this type of cancer, and best of all, the prognosis was excellent, with a 5-year survival rate of 90% or higher. We could even pursue getting my eggs frozen before the hysterectomy, and we had every reason to believe I’d live a long and healthy life after the surgery. We left the appointment feeling so much better, and we both really liked my new doctor. Surgery would be in about a month, and about a week to 10 days later, we’d have lab results to tell us whether I’d need radiation. That would tell us when this chapter of my life would be over, and then we could get on with life.
Just a Bump in the Road
A bump in the road; a reminder to live life to the fullest; a close call but nothing to get too concerned about. Yes, cancer is cancer, but if you have to get one, a curable one is the way to go. These thoughts kept me calm in the wake of my initial diagnosis. Surgery was scheduled for the end of June, and we had plenty to do in those next five weeks. We immediately got to work sorting out the egg retrieval process with the fertility clinic we’d visited a couple of years previously in our earlier quest to conceive. In vitro fertilization had seemed like such a extreme and expensive option in 2010, but the impending loss of my reproductive system kicked us into high gear immediately. I also had to figure out things like insurance deductibles and short-term disability coverage. Most challenging was breaking the news to my family and a few close friends. With my parents, I was careful to avoid words like “cancer,” “tumor,” and “malignant,” instead saying I had a “growth that needs to be removed” and that this was “highly treatable.” It was tough, but I was fairly confident this would all be over soon. In fact, I was still planning to run the Chicago Marathon for the second time this coming October, which would be challenging since the surgery would fall during the 4 months required to train for such an event, but I had a goal, and it felt good.
After 3 weeks of injectable medications, blood tests and ultrasounds, I got my eggs retrieved on June 21. The following Friday, I checked into Cedars Sinai for my hysterectomy, which went exactly as expected. It definitely felt like I’d had major surgery, but I got to go home on Monday to start the healing process. My first post-op check up was scheduled for that Wednesday, July 3. That’s the day my life changed forever.
D-Day: July 3, 2013
It wasn’t easy to move around at this point. My surgical incisions were quite painful, and I had come home with a catheter, and having it removed was supposed to be the highlight of this follow up appointment. It was only 6 days after surgery, with a weekend thrown in, which meant that the post-op pathology report shouldn’t be available yet. With the July 4 holiday, I didn’t expect to hear any news at all until the next week. It was all about getting rid of that catheter! It was slow going to get to the cancer center, as I was still in a lot of pain, but we made it on time. When we were settled in the exam room, we learned that my doctor had had to leave because of his own medical emergency (doctors get sick too), so one of his colleagues who I had met while I was hospitalized joined us. Because of what came next, I’m so glad that my husband and I had both met her at the hospital and really liked her. After the brief pleasantries, she told us that the pathology report had come back, and they did not find what they had hoped or expected. Instead of adenocarcinoma, which is the less common of the two main types of cervical cancer, I had something called a high grade neuroendocrine tumor, which is extremely rare and very aggressive. And it had spread to my lymph nodes. My worst case scenario suddenly went from the possibility of radiation, which seemed terrifying enough, to a very aggressive cancer that would require an equally aggressive treatment regiment. Now we were talking about both radiation and chemotherapy, and we had to start soon. I’m usually very calm and professional with doctors, but the tears started immediately. I was in shock and overwhelmingly terrified. That 90% survival rate? Not applicable. A bump in the road? Hardly. The stupid jokes I’d been making for the last month, things like “I can’t do the dishes tonight, Honey, I have cancer?” Not remotely funny. Suddenly the sh*t got real.
It did get a little better. The doctor was wonderful. She kept getting calls on her cell phone, and without even looking at the caller ID, she just shut off her phone. She even said “whoever is calling me can wait, because I’m talking to you right now.” I could have hugged her, which is not at all like me. She also told me that Cedars Sinai has an oncologist on staff who specializes in neuroendocrine tumors, and that he is one of the preeminent experts in the country. My next steps would be to meet with this neuroendocrine specialist as well as the radiation oncologist, which would happen in the next couple of weeks. It was very, very bad news, but at least we would have a plan for treatment. At least I got that dreaded catheter removed.
I spent the next few days in shock, and my husband and I did not tell anyone at first. We did our share of Googling the terms we’d just learned now applied to me, a woman who 3 months ago thought I was in the best shape of my life. There were lots of applicable search terms: neuroendocrine carcinoma, poorly differentiated neuroendocrine carcinoma, high grade neuroendocrine carcinoma, small cell cervical cancer. We learned how rare this cancer is – only about 100 of the 12,000 cervical cancer diagnoses made in the U.S. each year. We also noted the dismal survival rates, which one (of the very few) studies put at 9% for someone diagnosed at Stage 3b, which was my revised staging after surgery.
Thanks for your story. I have mid-gut carcinoid cancer with mets to my liver (this is NETs also) and also blog about it and my life.
Each NETs story will raise awareness and help us all.
May we each have the best possible outcome,
Amy, You are in my thoughts and prayers. I understand the journey you are on. I just know that MD Anderson will provide you the treatment needed. Much love, Sherrie
Amy – I am rooting for you. And, I have my calendar marked for our date to run the 2015 Nike Women’s Half Marathon in San Francisco. Your story is amazing and inspirational. Thank you for sharing it.
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