No one ever expects to hear the words, “You have cancer”, at the age of 36. No one expects that, four months before her wedding, she’ll undergo major surgery to remove all of her reproductive organs, which she was hoping to use to carry a honeymoon baby. No one expects lose all of her beautiful hair and walk down the aisle wearing an itchy, uncomfortable wig. No one expects to live each day thinking that, at any time, she might face a recurrence that will kill her, leaving her parents, her children and her new husband to wonder why. But that is exactly what’s happened to me.
Let me start from the beginning. In 2009, I started experiencing some mild, pink streaking after intercourse. I spoke to my gynecologist about it, and he wasn’t concerned. Around that time, I tested positive for HPV, the virus that causes MOST types of cervical cancer. My gynecologist performed a colposcopy, or a biopsy, to test the cervical tissue and make sure we weren’t dealing with cancer. The results were negative, but I was instructed to come back every six months so he could keep an eye on me.
At my next appointment, I mentioned the post-coital bleeding once again, and once again, my doctor didn’t seem worried. Instead, he put me on birth control pills, assuming they would fix the problem. The HPV test was still positive, but no further tests were performed.
Six months later, in January of 2011, I returned for my next exam. I was still experiencing bleeding after sex, even though I had been taking my birth control pills regularly. After another PAP came back positive for HPV, my doctor, once again, decided to do a biopsy of my cervix. The results showed a higher level of dysplasia (abnormal cells) than the year before, so he scheduled me for a LEEP. A LEEP is a procedure done to remove the top layers of abnormal cells from the cervix and hopefully allow normal cells to grow back instead.
On April 1, 2011, the LEEP was done. Two weeks later, I went back to see my gynecologist for a follow-up, never expecting the news he was about to deliver. “There was some cancer there,” he explained. Wait. SOME cancer? But I’m getting married in four months! I’m young! I’m healthy! Why me? His words were, “This is directly related to the HPV. Don’t worry! It’s very treatable. Just a bump in the road!”
The next few weeks were a blur of appointments with doctor after doctor, hospital after hospital. No one seemed to be in a hurry to treat me…until I got the call I’ll never forget. “Hi Suzanne,” said the doctor’s voice. “I just wanted you to know that your cancer seems to be showing signs of a more aggressive and serious type of cell. I know you’re getting married soon, but you’re gonna need more extensive treatment than we’d originally thought. Not only will you need a full, radical hysterectomy, but you’ll also have to have radiation and chemotherapy. You might still be able to get married as planned, but with the hair loss, I don’t know if you’ll really want to.”
I couldn’t speak. I hung up the phone, curled up into a ball on my floor, and cried my eyes out. After I’d calmed down a bit, I called another oncologist, who I’d actually chosen to take my case, and explained what the first doctor had said. “Hmmm…” he thought for a moment, “The only type of cervical cancer that would be THAT serious is something called Small Cell Neuroendocrine Carcinoma. There’s only about a three percent chance you’d have that. Did he use those words?” I couldn’t remember. After assuring me that we’d get to the bottom of this, my doctor called the lab to have my original LEEP slides sent to his office for review.
It was a long few days waiting out the results, but, as I’d feared, it turned out that I was one of the super-rare cases of Small Cell Neuroendocrine Carcinoma of the cervix. Surgery was set up for a month later, on June 14, 2011. I really wanted to have my eggs harvested for future use, so I got that process started immediately. In the meantime, I was ordered not to Google my diagnosis because everyone’s case is different. I obeyed those orders.
At the end of May, 16 eggs were harvested. On June 14th, I had a full, radical hysterectomy, including removal of my ovaries and a bunch of lymph nodes. The pathology showed that my cancer had grown larger than they’d anticipated, and the disease was found in one of the nodes they’d removed. I was staged 2b, instead of the original thought of 1b.
After a few weeks of recovery and a nasty infection that landed me back in the hospital, I started my first of four rounds of chemotherapy, in conjunction with my first of 28 rounds of external radiation. I was sick and in pain and bald. Luckily, I found an online support group that helped me realize there were others out there with this terrible cancer. But I also found out all of the information I would’ve discovered had I been allowed to Google. And it scared me to death.
First, there is no known link between HPV and SCCC. It was just a coincidence that I had both. My original gynecologist, like so many people out there, was misinformed. Second, SCCC has an 80% chance of recurrence and death within the first five years of diagnosis. Third, women who were found with stage 2b or higher generally had even less of a chance of survival. I had to try and think positively, which, now that I knew the details, wasn’t easy to do.
I finished my radiation treatments, and three weeks after my third cycle of chemo, I actually made it to my own wedding – wig and all! And three days later, my honeymoon was spent back in chemo.
It’s been almost 18 months since I finished my last treatment. My hair is growing back nicely, we finally went on our honeymoon to Bora Bora, and we’re considering finding a gestational carrier for our frozen embryos. I go back for CT scans of my pelvis and chest every three months to check for recurrence. So far, I’ve been lucky. I can’t say that my mental state is always positive, but I will continue to try as hard as I can to keep going and living my life.