Are you surprised?
He was wrong.
Two years before my cancer diagnosis I had been told there were abnormal cells, or dysplasia, in my PAP smear. They were following me very closely to make sure the cells didn't become precancerous which, interestingly, they never did. Yes, I had HPV, as most adults in the world do at some point or another, but the dysplasia was mild and nothing sent up a red flag for cancer. I followed up with my gynecologist every six months, as he'd suggested, to keep on top of any changes, but everything stayed mild. Then, at the two-year mark of my first abnormal PAP, the dysplasia showed up as slightly higher risk. My gynecologist performed a biopsy and, in no uncertain terms, assured me, "This is NOT cancer, but I think we should do a procedure to scrape out the abnormal cells and let new ones grow back in their place. That should get rid of the HPV for good." So that's what we did. On April 1, 2011, I had the LEEP procedure. In no way was I prepared for the words I heard on April 14, 2011, "There was some cancer there…" My doctor was so matter-of-fact; like he was telling me there was some mustard on my lip from a sandwich I'd eaten for lunch. "It's just a bump in the road," he continued. "This is an easy cancer. Very slow-growing. Very treatable. They'll probably just have to do a little bit more surgery to get the rest out. Maybe you'll have some radiation, but that might not even be necessary. Don't worry!"
One month and three oncologists later, I finally chose Dr. L as my surgeon. Sometime during those four weeks, my initial, basic, run-of-the-mill, cervical cancer diagnosis had changed to a much scarier and much less familiar cancer called small cell neuroendocrine carcinoma of the cervix. Dr. L insisted that I should not Google my illness because I wouldn't find any helpful information online. Not enough was known about the disease so I should bring any questions I had right to him. He was very straightforward and easygoing at the same time, and the fact that he couldn't squeeze me into his surgery schedule until June 14th led me to believe we weren't in a race against time. That was ok with me, though, because it gave me a chance to harvest my eggs for future use with a gestational carrier. Who knew that extra six weeks could've killed me?
At the end of May I put 12 embryos on ice and started preparing for my surgery date a few weeks later. My regular gynecologist's original statements of, "Just a bump in the road. Easy cancer. Very treatable," flew out the window as I got ready to say a final farewell to my uterus, fallopian tubes and ovaries. Then, looming on the horizon, was the promise of 4 cycles of chemotherapy, each lasting 3 days, with a two-week break in between. Oh, and on top of that, I would have a bonus 28 rounds of external pelvic radiation. Piece of cake! Did I mention that all of this was happening four months before my wedding?
On June 14, 2011, I walked into the hospital a complete woman and was wheeled out of the operating room, just the shell of one.
The pathology report was the next shocker. What was originally thought to have been stage Ib cancer had actually spread enough in a few short weeks to be classified as stage IIb, with one lymph node showing disease as well. I thought this was a slow-growing cancer?
While recovering from surgery and dealing with my anxiety over starting chemo and radiation, I searched online for a support group for this bitch of a cancer I had. I was careful not to read anything about my disease, as Dr. L had warned, but I just wanted to talk to other people who had been through what I was going through. That's when I found a Rare But There Facebook page for women who had received a diagnosis of small cell neuroendocrine carcinoma of the cervix or her sister, large cell neuroendocrine carcinoma of the cervix. There weren't very many of us, but what we lacked in numbers we made up for in strength and encouragement for each other. At that point I was too wrapped up in questions about what to expect during radiation and chemotherapy to really pay attention to what the other "sisters" in my group were discussing around me. The only thing I remember from that time was that six, yes SIX, women lost their battles to the disease between Thanksgiving and Christmas of 2011.
My treatments began on July 19, 2011 and ended on September 30, 2011. By November, I was starting to feel slightly normal again. Well, aside from the Sinead O'Conner hairdo. At that time I was given the name of a filmmaker who was looking for women for a documentary about cervical cancer for HBO. I jumped at the chance to get involved and the interviews began. The filmmaker came to my house on numerous occasions to talk to Jimmi, my kids, my parents and me. I realized quickly that the focus was mainly on the relationship of HPV to cervical cancer and the need for everyone to be vaccinated against the virus so we can wipe out cervical cancer altogether. Sounded like a good plan to me!
But then the research I'd been careful to avoid smacked me in the face so hard I couldn't ignore it any longer.
One of my small cell sisters made a video for Cervical Cancer Awareness Month in January, 2012. I hit play and watched as photos of my new friends flashed across the screen, followed by statistics and facts about the disease that had turned my once healthy body into a scarred up, bald, menopausal mess at the tender age of 36.
- 12,000 cases of cervical cancer in the country are reported every year. 1% of those cases make up small/large cell neuroendocrine carcinoma of the cervix (SCCC/LCCC)
- The 5-year survival rate for SCCC/LCCC is only 15-20%
- There is no precancerous phase of SCCC/LCCC
- There is no known link between HPV and SCCC/LCCC
I had to rewind and replay the video five times to make sure I had read that information correctly.
The 5-year survival rate is only 15-20%? That means there's an 80-85% chance I'll be dead before I turn 40? Is that why Dr. L didn't want me to read about SCCC? I immediately disregarded all of the warnings and went straight to Google to type in "small cell neuroendocrine carcinoma of the cervix." Every website said a different form of the same thing, "Prognosis poor. Death likely." And, even worse, the survival rate for patients in stage IIb or higher was almost nonexistent.
I was stage IIb.
I was so hung up on the fact that I'd been staring death right in the eyes, without ever knowing it, that I missed the part about HPV not being linked to SCCC/LCCC. Once I'd calmed down a bit, I went back to read the facts in the video again. Wait, SCCC and LCCC aren't linked to HPV? But my gynecologist said all cervical cancer was caused by HPV. I think I'd read that online as well. The information in the video must be wrong. Luckily I had an appointment with Dr. L that day and I planned on asking him directly.
The filmmaker arrived at my house in time to go with me to my appointment at the cancer center because he wanted to be there to film the results of my 6-month, post-treatment scan for the cervical cancer documentary. Unfortunately, we couldn't get permission quickly enough for him to film inside the building, but he had no problem waiting for me outside. On the car ride over, Jimmi drove and I was interviewed on camera. I couldn't wait to spill the big news. Not all cervical cancer is caused by HPV so not all cervical cancer is preventable! I knew this information was huge and so important for all women to hear. I was so lucky to have this documentary as a platform to get the word out to so many people at once! A negative HPV test does NOT mean cervical cancer is impossible. I was gonna help save lives with this information! To my surprise, the filmmaker didn't seem as excited about this new and important data as I was. He urged me to double-check with my oncologist to make sure what I was reporting was actually accurate. I planned on doing so.
Upon arrival at the cancer center, Jimmi and I left the filmmaker outside to wait for us while we met with Dr. L. "Your scan was clear!" announced the doctor, almost as surprised as I was that I was still cancer-free. "I Googled small cell," I confessed. He could see by the look on my face that I knew all the grim facts about my chance of survival. But I had more important things to talk about, "Is it true small cell isn't caused by HPV?" I asked. Dr. L was frank with me, "We can't find a definite link. We know for sure that the regular cervical cancers, squamous cell, adenocarcinoma and adenosquamous, are one-hundred percent caused by HPV, but not small and large cell. We really don't know what causes those." I still had questions, "But I had HPV." Dr. L nodded, "Yeah, it was just a coincidence. Honestly, most adults have HPV at some point or another and may not even know it. It's in something like eighty percent of the population. Chances are, if you've had sex, you'll have HPV in your lifetime. That doesn't mean you'll definitely get cancer. You just happened to have HPV and cancer at the same time, but your small cell was not caused by the HPV."
I couldn't wait to tell the filmmaker! This was gonna blow his documentary out of the water and help to disseminate the correct information to so many women!
The camera was rolling as I exited the building. My giant smile already told him what was about to come out of my mouth, "Clear scan!" I announced. "And," I went on, "small cell is NOT caused by HPV! Not all cervical cancer is caused by HPV so it's not all preventable." Again the filmmaker's face reflected disappointment and I couldn't imagine why.
A few days later, I got my answer.
"Hi Suzanne, it's F." This didn't sound positive. "So, I was discussing your new information with the producers of the documentary and we have a small problem." I listened. "You see, the producers are the manufacturers of the HPV vaccine and they are funding this project. Since your cancer isn't directly linked to HPV, it really doesn't fit the message of the video so they've asked me to let you know we won't be needing you anymore." For real? "They're cutting me out?" I asked. He replied, "Unfortunately, yes. It's just that, since your cancer couldn't have been prevented by their drug, your story really doesn't fit." I was livid, "I understand that, but don't you think women have the right to know that there are different types of cervical cancers they can get without HPV? You can help me get the word out. We can save lives!" He tried to ease the blow, "Yes, I think you have a good point. I think your story needs to be told and I plan on making a totally separate video with you and anyone else you know with small or large cell. You could really help a lot of women. I'll be in touch."
That was January of 2012. That was the last time I heard from the filmmaker.
And here we are, two years later, with two more Cervical Cancer Awareness Months that have been promoting only HALF of the awareness women need. I don't understand why it's so difficult for the correct information to reach the public. Don't believe me? Go online and read. The National Cervical Cancer Coalition says, "HPV is found in about 99% of cervical cancers." The Centers for Disease Control says, "Almost all cervical cancer is caused by HPV." These are reputable sources for medical information. I know I've never been good at math but, as far I can tell, if "HPV is found in 99% of cervical cancers," that leaves another 1% where it is NOT found, right? On the other hand, I am very confident in my verbal strengths and I know for a fact that "Almost all cervical cancer is caused by HPV" does not actually mean all cervical cancer is definitely caused by HPV.
Do the math, my friends. Read the words. Educate yourselves. Educate others. Pay attention to your bodies. Whether you've heard the words, "You have HPV" or not, if something doesn't feel right, it probably isn't.
Please share this post anywhere you can. Help save lives.