My Story | Linda O., Texas, USA
My name is Linda O. Because I am a diethylstilbestrol (DES)-exposed daughter, my gynecologic health has always been closely monitored. I developed squamous cell carcinoma in situ of the cervix when I was 21, and thereafter, always had regular Pap tests and gynecologic exams even after my hysterectomy for fibroid tumors at age 38. I am very thankful that I did.
My journey with vaginal cancer began a year ago. I had just met with my gynecologist the day before to receive the results of a biopsy of a nodule on the left side of my vagina near the Bartholin gland. She explained that it was squamous cell carcinoma of the vagina, and that the one case she had seen in twenty years had not turned out well. So, she told my husband and I to go home and mourn. Because vaginal cancer was so rare, she recommended that I find a gynecologic oncologist as soon as possible. I would also need a full body workup to determine if the cancer had spread elsewhere such as to my lungs or liver. "It is ALWAYS somewhere else," she said. Needless to say, my husband and I left the office in shock and despair.
We went to my sister-in-law's home and she called her gynecologist. He returned the call within ten minutes and, after she related my situation to him, he asked to speak to me. To this day, I call him my "Christmas Angel" because without having ever met me, he took immediate control of the situation. He said he would arrange an appointment for me the next day with the best gynecologic oncologist he knew. He was able to ease my mind by telling me to quit crying, go to work in the morning, and wait for him to call. He said I would die in a car wreck before I would die of this cancer; that what I would have to face would not be "cool," but I could get through it.
The next day I went to work wondering what could be accomplished with Christmas just a few days away. My sister-in-law's gynecologist called me there, telling me to be ready to meet with the gynecologic oncologist at a moment's notice, and, sure enough, I was called to his office that afternoon. My husband met me there.
I soon realized the doctor had come in just to meet me, as it was his day off. He was so wonderful. After studying my MRI (magnetic resonance image) and examining me, he told me he believed my cancer was still at an early stage. He scheduled me to meet with a radiation oncologist the next day for a second opinion on a course of treatment. They both decided that surgery was not an option. Because the tumor was so close to my anus, they felt it would be impossible to get clear margins.
They decided on 25 days of external radiation (to vagina and lymph nodes), and chemotherapy (cisplatin) once a week for six weeks, followed by surgery if needed. I went home for Christmas and was back the day after for tests and radiation therapy set up. I started radiation on Jan 2, 2001.
I didn't start feeling bad until the third week. I had chemotherapy every Friday. The treatment took eight hours and I would be sick until the next Tuesday. The daily radiation burned me so badly that I could not sit for two weeks. By the last five days of radiation, I had to have two blood transfusions and neupogen shots for a week to raise my blood counts. Then I did nothing for two weeks. At that point, my tumor was completely gone and there was no evidence of cancer in any other part of my body.
After the two-week rest, I went into the hospital for three days of internal radiation. My treatment ended on March 10, 2001, and since then, I have been doing wonderfully. All my checkups have been good. I feel that I really have been blessed to have such wonderful, caring doctors. I wish everyone could have this same kind of treatment. I was also blessed to have such a wonderful, caring husband. Although we had only been married four weeks at the time of my diagnosis, he was so wonderful during my treatment, caring for me when I was so sick. I really feel blessed.
Now, I just go for three-month month checkups and Pap smears. In March 2002, I will have additional tests done, but right now everything looks good, and I pray it stays that way. I am very thankful I did not have to have surgery, as it would have meant removal of my anus and more. Somehow, I believe the DES was responsible for my cervical and vaginal cancers, but my doctor feels that this is not the case, since they were squamous cell carcinomas rather than the clear cell type.
Even though I have never found anyone else who has had vaginal cancer, I am so glad I found EyesOnThePrize.org. It is so hard for anyone who hasn't been through cancer treatment to really understand it, or even want to talk about it. It is also very embarrassing to discuss such a personal disease with anyone who hasn't "been there".