So this is a longer blog post, but it was almost therapeutic to write for me. In two years since my cervical cancer diagnosis, I’ve wanted to write my original gynecologist a letter. I don’t know if I’ll ever send this to her (I’m keeping her name out), but I felt it might remind others to ask questions and to never assume your doctor is doing what you thought was right. This is your body, your life. Ask questions and be persistent, no matter how well you know your physician.
Since I haven’t heard from you in over two years, I thought I’d write and let you know I am well. I am cancer free since the end of 2014 after undergoing a cone biopsy in July 2014, a radical hysterectomy the day before my 34th birthday in August 2014, and then five rounds of chemotherapy and 28 rounds of external radiation that ended in November 2014.
In September 2014, my daughter started Kindergarten, my daughter who you helped bring into this world via c-section on January 2009. She started less than a week after my hysterectomy. I still had a lot of discomfort and a catheter from the surgery. I tried to hide the tears as my family pushed me in a wheelchair so I could “walk” with my daughter on her first day of school. During treatment I missed attending some of her first school activities because it would have been dangerous to get sick.
Back then my daughter didn’t understand much of what was happening. She still doesn’t really. She asks why she can’t have brothers or sisters like many of her friends. She can’t yet comprehend that what made mommy better, what got rid of the cancer that could have killed me, also took away my fertility.
I’m telling you all of this because you need to know it. I need you to know what I went through, and I need you to know that I’m angry about it. I’m angry that when I came to you in November 2013 and complained that I was having some bleeding after sex, you told me I had a sensitive cervix, probably due to changing hormones. The only tests you did were swabs for infection. I’m angry you didn’t do a Pap test based on the knowledge that over the previous few years my tests had been clear. I’m angry that with my history of HPV (since 2007), abnormal Pap tests and multiple colposcopies/biopsies, you didn’t consider that a Pap test was warranted even though bleeding after intercourse is a symptom of cervical cancer, in which more than 90% of cases are caused by high-risk strands of HPV, one of which I have. I’m angry that I went on for almost a year thinking that the bleeding I was having was due to my “sensitive cervix”. I’m angry that when I returned in July 2014, less than a year later, it was so obvious that something was wrong the moment you did an internal exam and had to do a biopsy. I’m angry that less than a week later I had to get a phone call that I had cervical cancer. I’m angry that there’s a great possibility that my cancer could have been caught almost a year sooner if a Pap test would have been administered when I first complained of the bleeding.
When I was first diagnosed you offered your cell phone number, told me to text or call if I ever had questions or needed to talk. You made me feel like you were there for me through this horrible ordeal and that made me feel good. For a while you seemed genuine. You would answer my messages or voicemails fairly quickly based on your schedule. But as things progressed in my cancer journey, you stopped answering. It was hurtful and it was wrong. I often wonder if it was because you knew you’d messed up.
I went through a lot during my cancer journey, I still do. I was out of work during the months after my surgery and during treatment to allow my body to heal. My husband was also out of work during part of this time, so we had very little money coming in and a family to feed and a roof to keep over our heads. But at least he could keep me company during some of my chemo and radiation. We made it through with help from our loving and supportive family. I developed quite a bit of anxiety that I still take Xanax for; it doesn’t stop me from being fearful that my cancer will return, but it does soften the horrible panic attacks I’d been having. I’ll always be scared that cancer will come back, that I won’t get to see my little girl (who just celebrated her eighth birthday by the way) grow up, get married, and have children of her own.
I am currently NED for two years and my amazing gynecologic oncologist feels I’ll remain that way. I can only pray he’s right and that I get to live to be an old woman. But even though I am healthy, which I thank God for every single day, I am still angry with you. People have suggested I file a law suit, that your not performing a Pap test based on my history and symptoms was malpractice. I’ve considered it multiple times, but what would it fix? Yes, we could certainly use the money, but would it truly help anyone?
I’m writing you this letter because you need to know that I’m alive and I’m thriving, but that it could have been worse. I need you to know that I always wonder how things would have been if you had performed a Pap test on me when I first came in and discussed with you that I was bleeding after intercourse. No one can know what would have happened, but considering it was almost a year before my cancer diagnosis, I often think my treatment would have been far less invasive. Maybe a LEEP or cone would have been enough to rid my body of cervical cancer. Maybe I could have avoided a full hysterectomy, chemo and radiation, and could have had more children. Maybe I wouldn’t be in full blown menopause in my mid-30s. Maybe I wouldn’t have severe panic attacks.
But you can’t go back and change what has already happened. I can only be happy that I’m alive and healthy and able to see my beautiful, intelligent, compassionate daughter grow. That I can enjoy everyday to its fullest. But you need to know that there are other women out there like me who will trust you and take your words without questioning them. You need to know that a Pap test is warranted whenever a woman with a past of HPV comes in with even the slightest possible symptom that could signal cervical cancer or precancer.
I am an advocate with Cervivor now, a non-profit organization that educates women about HPV and HPV-related cancers. I’m using my story to help women understand these diseases and their bodies, so maybe they won’t have to go through what I did. I’m using the worst and most difficult thing that has ever happened to me, to help others.
I hope you understand that when I hit my five year NED mark that I will not return to your office. I hope you know that when someone tells me they’re a patient of yours, I ask them to be cautious and consider seeing someone else. Because I’m angry and because I worry for them. I know in my heart that you are a good person, but I also know that there’s a pretty good chance that my cancer journey could have been at least a little easier had you done the right testing in the first place. I hope you’ve already learned from my story when you surely heard from my oncologist, who you recommended, that I would need invasive surgery and then further treatment. I hope it made you stop and think and regret enough that you’ve been more diligent in the care of other patients.