Dysgerminomas are a rare form of ovarian cancer that most commonly occur in young women of reproductive age, unlike other forms of ovarian cancer that occur mostly in perimenopausal and menopausal women. Although dysgerminomas are the most common type of malignant germ cell tumors, they are still rare and account for approximately 1 percent to 5 percent of all ovarian cancers, according to WebMD. Dysgerminomas appear in teens and young women; WebMD estimates the “mean age being 22 years.
When I was 23 years of age, I was diagnosed with dysgerminoma ovarian cancer. It took one year for me to receive a proper diagnosis. I visited many doctors complaining about a swollen abdomen, abdominal pain, frequent bladder and kidney infections, and getting full after eating only two to three bites of food. Being young, I encountered doctors who did not take my symptoms seriously. They accounted my stomach bloating to weight gain, even though the rest of my 95 pound body had not gained weight. Doctor’s shrugged off my abdominal pain and inability to eat more than a few bites of food and they attributed the fact that I had frequent urinary tract infections to me just being a person that was prone to them.
For one year I did not feel well. More importantly, my instinct told me that something was wrong. Luckily, I listened to my instinct and continued to seek treatment from different doctors until I was finally diagnosed. My original diagnosis was not ovarian cancer, the cancer was not discovered until I had surgery. The beginning of my diagnosis started when I tested positive as pregnant. When the doctor performed an ultrasound, he did not find a baby, but instead found a large tumor that appeared to be sitting on top of my uterus. The doctor concluded that I had a harmless benign fibroid tumor and took greater concern with the fact that I was testing positive for pregnancy, without evidence of a baby in my uterus. Concerned that I had a tubal pregnancy, the doctor decided to operate.
Once the operation began, the doctor was surprised at what he saw. The tumor was indeed sitting on top of my uterus, because it was so large. The tumor– the size of a grapefruit–completely encapsulated my ovary, was sitting on top of my uterus and pushing on my bladder. If the tumor had been allowed to grow much larger, it would have broken my uterers–the tubes that connect the kidneys to the bladder–causing urine to spill out into my abdomen. Turns out my frequent bladder and kidney infections were caused by the tumor pressing on my bladder, deforming my bladder to a degree that made it impossible for it to completely empty, which left urine to sit and build bacteria inside my bladder. The bacteria growth caused bladder infections that spread to my kidneys.
Fortunately, the tumor was graded at stage 1A, which means the tumor only affected the one ovary and had not spread to other parts of my body. The large size of my tumor produced the symptoms that alerted me something was wrong. Some women have small tumors, about the size of a pea, that produce little or no symptoms, causing the tumor to go unnoticed until it spreads to the other ovary or other parts of the body.
The surgery I had was called a unilateral salpingo-oophorectomy, which means the affected ovary and fallopian tube was removed. Depending on the size of the tumor and how far the cancer has spread, some women require the removal of both ovaries and fallopian tubes, a complete hysterectomy or if the tumor cannot be completely removed, a procedure called tumor debulking is performed. Tumor debulking is when the doctor removes as much of the tumor as possible.
Depending on the stage of cancer, type of cancer and aggressiveness of the growth,radiation, chemotherapy, bone marrow transplants or a combination of multiple treatments may be performed after surgery.
I think there are a few reasons that it took so long for me to originally get a diagnosis. One, I did not have a doctor who I regularly saw, who knew my history. Two, I was young and the doctors mistook my symptoms for common complaints young women experience. Three, the doctors I saw were not oncologists and I do not believe they were equipped to recognize ovarian cancer signs.
I really believe that a person knows their body. If you sense something is wrong and are not getting satisfactory answers from your doctor, seek treatment from another doctor. If it takes you 20 different doctors to get a satisfactory answer, then see 20 doctors. It is not acceptable, in my opinion, to continue to have health symptoms and concerns go unanswered and untreated.
All of the symptoms I was experiencing are common early signs of ovarian cancer. Ovations, a partner of the American Cancer Society New England, lists the most common signs of ovarian cancer as “bloating, pelvic or abdominal pain, trouble eating or feeling full quickly and urinary urgency or frequency.” Additional signs of ovarian cancer can include back pain, pain during sex, unexplained bowel changes, menstrual changes, stomach upset, persistent fatigue and unexplained weight changes. If you experience possible signs of ovarian cancer, see your doctor immediately. Your doctor may perform a pelvic exam, vaginal ultrasound or CA-125 blood test to detect ovarian cancer. The CA-125 test is used to detect proteins produced by some types of cancer cells, but the test is not perfect and can produced false positives or false negatives.
The earlier dysgerminoma is detected the higher your chances of survival. The John Hopkins Manual of Gynecology and Obstetrics estimates the “five year survival rate for stage 1A disease is 95% and for all stages the rate is 85%.” A cancer diagnosis is scary and one nobody ever wants to experience, but the good news is that the survival rates after dysgerminoma are usually good. As I write this, it has been 15 years since I was diagnosed and I thank God I am healthy and cancer free.
emedicine from WebMD: Ovarian Dysgerminomas
Ovations: Ovarian Cancer – What You Need to Know
The John Hopkins Manual of Gynecology and Obstetrics; Kimberly B. Fortner, John Hopkins University. Dept of Gynecology and Obstetrics, Edward E Wallach; 2006
Learn More About Ovarian Cancer
American Cancer Society: Ovarian Cancer