Location: United States
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 will undergo major surgery to remove all of her reproductive organs, which she was hoping to use to carry a honeymoon baby. No one expects to 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 mom, her children and her husband to wonder why. That is exactly what 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 was not 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 were not 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 did not 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. Also, by that point, I was extremely bloated all the time, not just around my period. I actually looked like I was 6 months pregnant! 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 to remove the top layers of abnormal cells from the cervix and hopefully allow normal cells to grow back in their place.
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 am 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 will 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 going to 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 had calmed down a bit I called another oncologist, whom I had 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 of the Cervix. There’s only about a three percent chance you would have that. Did he use those words?” I couldn’t remember. After assuring me that we would 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 had 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. Since I really wanted to have my eggs harvested for future use, 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 radical hysterectomy, including removal of my ovaries and a bunch of lymph nodes. The pathology showed that my cancer had grown larger than they had anticipated, and the disease was found in one of the nodes they had removed. I was staged IIb, instead of the original thought of Ib.
After a few weeks of recovery and a nasty infection that landed me back in the hospital, I started the first of four rounds of chemotherapy, in conjunction with my first of 28 rounds of external radiation. Two weeks later, I was sick, in pain and bald. Luckily, I found an online support group that helped me realize there were others out there with this terrible cancer. I also found out all of the information I would have 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 IIb or higher generally had even less of a chance of survival. I had to try to think positively which, now that I knew the details, was not 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.
Two years after I finished my last treatment, my hair had grown back nicely, we finally went on our honeymoon to Bora Bora, and a gestational carrier became pregnant with our little girl, Aria, who was born on May 16, 2014. I go back for CT scans of my pelvis and chest every six months to check for recurrence. So far, I’ve been lucky. I cannot 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.