My name is Barb and I have been cancer free for six years! I had a very rare type of ovarian cancer called Granulosa Cell Tumor of the Ovaries. Granulosa cell tumors are usually not found in younger women, and out off all of the women with ovarian cancer, only five percent have this type of ovarian cancer. This type of cancer cannot be detected by the same blood test as the other ovarian cancers. Mine is an unusual story as I actually had the cancer since at least November 1993, but I was not diagnosed with it until March 2000.

In November 1993 I felt a slight tapping in my abdomen, I thought maybe I was pregnant. I went to the gynecologist and had an exam, and ultrasound. They found a mass on my ovary, later did a laparoscopic surgery and sent the specimens to pathology. The results came back negative and I was told that I had a benign fibroid tumor. In November 1994 I had the same sensation, just a tapping inside my belly. I had the same procedure, the specimens were sent to pathology. Again they came back negative and I was told it was just another benign fibroid tumor.

Over the next few years I had similar feelings in my belly, and when I went to the gynecologist, he assured me not to worry. He explained that women get fibroid tumors from time to time and they are not considered dangerous.

By May 1999 I had swelling in my abdomen and occasional cramping. I went to a different gynecologist. I had an ultrasound which showed a large mass on my ovary. At that time the gynecologist suggested that I have surgery to remove the mass and the ovary, if it was necessary. On my 29th birthday I was put under. They removed four tumors the size of kiwi fruits and one tumor the size of a cantaloupe from my abdomen. Some of these tumors were on my ovaries and some were on my uterus. The specimens were sent to pathology and again they came back negative, they were considered benign thecomas.

By January 2000 I had severe cramping and went back to the gynecologist. She referred me to an oncologist even though the previous tests came back negative, just “to be on the safe side”. In March 2000 I had surgery again, this time they removed five large masses, again one the size of a cantaloupe, my uterus, appendix, ovaries, tubes, lymph nodes and omentum. The specimens were sent to pathology, along with all of the slides from the previous years surgeries – all slides came back positive for Granulosa Cell Tumor of the Ovaries. I was a stage 3a by the time I was diagnosed. If the pathology department would have correctly diagnosed me in 1993, I would have only been a stage 1a.

During the time I had the cancer and did not know it, I had two children, one boy and one girl. I am thankful for my children, I love them dearly. I worry about their future health sometimes. Since I was pregnant with them and did not know I had cancer, I worry that since the ovary they were born from had cancer, could that have affected them in the long run?

I went through four rounds of chemotherapy, each round was five days, for about 6 - 7 hours each day. I had 12 weeks of radiation, two more surgeries and a blood transfusion. I have been informed that the amount of radiation I had is enough for a lifetime, I cannot have anymore. I received the strongest any one person can have. Not to mention all of the sores, shots in the stomach and medication. I lost my hair about a week or two after my first round of chemo. I remember clumps of it falling into my hands as I combed my hair. I was very tired and had a real loss of energy for nine months and I lost 35 pounds due to lack of appetite.

I thank my family and friends every day for the support they gave me during my treatment. They drove me to and from treatments, took care of my kids when I could not, brought me food to eat, sent me cards, flowers and books for encouragement, listened to me cry, made me laugh. My sister came over to bake Christmas cookies with me, although I could not even lift my head. She baked them all for me! My family would hand envelopes of cash to me every so often to help out with the bills since I could not go to work. My brother sent my family on a vacation during the summer. My other brother had a benefit for me in our home town and raised a few thousand dollars to help pay my medical bills. I will never forget all of the help, understanding and love I received from everyone. My husband is my strongest support. He keeps me positive, his strength kept me going, especially during those times I just wanted to give up.

Just recently I was diagnosed with lymph edema in my legs. This is swelling in the legs because I had some lymph nodes removed during my treatments. Additionally I have been having difficulties with bowel obstructions. These are very painful and I may eventually have to have some intestines removed that have been damaged by the radiation.

It’s been difficult for me emotionally throughout the years. The first few years every time I felt the slightest bump in my body I worried “is the cancer back?. Each exam I have had does not go past without much worry and stress, until I get the results. It’s is especially difficult for me when I hear of the struggles that other ovarian cancer survivors are enduring. I feel so bad for them, knowing what they are going through. And then worrying about my own health as I think about theirs. I have not had a recurrence, and I pray every day that I never have one. My husband continues to support me when I have my doubts and scares, he walks through every step of the way with me.

If I can deliver one important message to everyone that would be to listen to your body, and if you feel there is a problem, keep looking for the right answer. So many times people look for a second opinion when they get a positive test result. Well, I say, if the test came back negative, get a second opinion. We have to be our own advocate, and we have to get the correct results.