Imagine being told you’re nine-year-old little girl has ovarian cancer. My mom and dad were told this on October 7, 1986 when I was nine years and four months old. Ovarian cancer is uncommon in younger girls but it does happen. I have met three other young ladies who experienced treatment for this type of cancer. For me, the ovarian cancer journey was not typical.
From the time I was a very small girl, my mom noticed my stomach would swell between morning and evening. Several doctors told her the problem was my swallowing air. Over time the pain became worse and I saw several doctors before one decided to do an exploratory laparoscopy. This procedure was done because over the course of one weekend I grew so nauseated I could not hold down a drink of water.
The grapefruit sized dysgerminoma, a rare tumor in that it is a germ cell but the most common of the germ cell tumors was removed from my right ovary. Due to a fall picnic where worked, the tumor wrapped around my ovary and caused me to become so nauseated I could hold fluids or food down. Finally after another trip to the doctor for pain, he asked my parents to bring me to the hospital that Monday for an exploratory laparoscopy.
I learned from one of the ladies my mom worked with and was present to deliver my anesthesia when they discovered the tumor that they were certain it was cancer even before pathology. She told me there was not a dry eye on the floor with the nurses when it happened. Dysgerminoma most likely traced back to being related to my Cowden Syndrome but we would not realize this until 2007 when Cowden Syndrome was officially diagnosed. In 1986, I honestly wondered if my parents believed I would live to be a teen.
The surgery revealed pathology consistent with dysgerminoma. I had cancer but I did not understand what cancer was, well not exactly. Looking back I am grateful I did not understand how ill I was or could have been. Although some cells looked on the verge of escape into metastasis, I was staged IA. For the following five years I attended St. Jude Hospital in Memphis, TN on gradually more distant visits. By the sixth year, I was placed on yearly visits. My mom was very nervous when this happened. She remarked about the cancer possibly coming back.
When I did not make my first yearly trip back due to physical problems, I did not believe it would be a recurrence. The doctors who examined me even said it was likely an enlarged lymph node. I wish it had been a lymph node. Instead, an egg sized dysgerminoma had grown through my inferior vena cava and sacrificed my right kidney. I had to start over to get to those yearly checkups and ultimately alumni status. I did not believe I would live to be 16 years old-must less the 26 I would be at dismissal. It is surreal to be writing this at age 33.
The standard chemotherapy for dysgerminoma still applies. I took Bleomyacin, Cisplatin, and Etipsode from Nov 1992-Feb 15, 1993. I was convinced I would not live to be 16 years old, then 17, then 20, etc. I worried a lot. I had few friends because I did not want to be close to someone and then die. I did not handle this diagnosis well.
Sometimes I wish I could go back to the 15 year old who ended chemotherapy and tell her to relax because she will live to be more than twice the age she was then. The temptation is to look too far ahead and I was afraid to look even one year ahead. New Years Day was a nightmare for me as I wondered if I would be around for the following year. Would I make it to see the new millennium? Yes, and at least ten years later.
The World Wide Web was a few years away when my cancer returned and I did not realize the high odds of survival a young lady has of surviving dysgerminoma. I only knew when I began to enjoy thinking my life was safe, I got sick again. This same thing would happen when I was diagnosed with ductal carcinoma in situ (breast cancer) in 2008. As of now I have a good understanding of why cancer is so strong in my life. I have an extra A nucleotide on my PTEN gene that leads to increased risk of cancers. In 1986 and 1993, I was many years from learning the cause of the cancers but it was there during the summer of 1977 when I was born.
Cowden Syndrome was a part of my life then even though I did not know the name of the condition. Not one year passed without scans prior to taking a break to conceive and carry my children without some type of cancer scare. I firmly believe this affected me in not being able to recover as fast as many people. Actually, all people are different. My advice to someone undergoing ovarian cancer is to not make the mistakes I did. I looked very far ahead in my life without making plans because I was never convinced I would live. In some ways turning 30 years old brought me out of this and I lost so much time I could have been enjoying my life.
I am not the typical ovarian cancer survivor. Many times people doubt I had ovarian cancer because I do have two beautiful children who unfortunately also have Cowden Syndrome. It is also odd for someone to read of a nine year old having that type of cancer even when dysgerminoma most often appears in adolescence.
The day I came into the world was 33 ½ years ago but I celebrate that day less than Feb 15, 1993. February of 1993 was when my chemotherapy ended. Chemo is an interesting thing no one understands until they go through it. My mom never left my side while I went through it but admitted she had no idea how bad it makes a person feel until she became sick herself. It is a shame chemo often makes a person feel sicker than before diagnosis but chemo is an amazing thing. This Feb 15, 2010 will mark 18 years since I ceased chemo for cancer. The ductal carcinoma in situ did not require chemotherapy.
My advice to those going through a similar thing is to keep the end goal of chemo in sight if you have a date. I had a Make-A-Wish delivered literally three months after treatment was completed. If you can, plan a trip or do something special for yourself when it is over. Knowing my trip would happen gave me something amazing to look forward to and helped in the months I did not believe I would make it through cancer treatment.
No matter what do not look at someone you have known in the past who may not have survived their diagnosis. Cancer treatment has come an amazing way. I once saw ladies return to St. Jude hospital after twelve and fifteen years free of cancer. I never expected to be able to say I have lived longer than those ladies had at the time. Life is an amazing thing and worry about illness will only take away from your enjoyment. Cancer takes enough-don’t let it have everything.
My name is Andrea. I’m 33 years old. I had ovarian cancer at ages 9 and 15. I had breast cancer at age 31. The experiences were hard but they made me stronger. If needed, find a support group and do not feel that admits weakness at all. Being able to talk about what you go through when fighting cancer is strength. If I had even $1000 for each time someone said my experiences have inspired them, I would be able to forget many of my medical bills. What counts is not the money. What counts is when you are a long term survivor and have people say, “If you can do it so can I.”