This all started in early spring 2009. My belly was getting big, and I decided to start a diet. At seeing my bloated tummy, a well-meaning esthetician suggested that I have a tummy tuck. Insulted, I chose more exercise and sit-ups. But I wasn’t feeling my best — I was fatigued, and taking naps, something I never did. I passed off my frequent need to urinate, probably inherited. After all, my mother knew where every public bathroom was in two counties, why shouldn’t I follow in her rushed footsteps? Trips to my primary care doctor proved futile. The advice, keep dieting.
In late July of that year, I went to see my gynecologist and was shocked to learn that it was suspected that I had ovarian cancer.
I did not have a biopsy before surgery. Instead, I went right to surgery. A frozen section was done in the surgical suite during my operation, called “debulking” surgery (a complete hysterectomy including the removal of the ovaries, called an oophorectomy. This immediately determined the type of cancer I had. My diagnosis: ovarian cancer stage 3. Samples of tumors, tissue, and lymph nodes were then sent to a lab, where a more complete pathology was performed, but those results just confirmed the diagnosis.
Bravely I asked my doctor for my prognosis. She told me: “You have a 20 percent chance of surviving five years. That means out of 100 women that have this surgery, only 20 will be alive five years from now.”
The most difficult words I’ve ever heard, and I’m sure on her behalf, difficult to speak.
Only years later did I learn that my insistence on going to a local cancer institution rather than have my own beloved gynecologist preform my debulking surgery was a significant factor in my initial survival. Honestly, fear, not smarts, was my motivator – if it was ovarian cancer, didn’t I want the best shot at survival? I wanted to be treated by experts, right?
Little did I know that research shows that many women don’t get the treatment they need in their first year following ovarian cancer diagnosis, and how important a role expert surgeons play in reversing this trend.
The benefit of gynecologic oncologists
It’s important to seek experts in treating your cancer type. Why? They are likely the most up-to-date on the latest treatments, surgical techniques, and guidelines that are relevant to your case.
What I didn’t know back in 2009 is that having my surgery done at a high-volume hospital by a specialist called a “gynecologic oncologist” (or gyn-onc) would most likely be one of the factors in my being alive eight years later.
These specialists are scarce. There isn’t one in every town and village, but having surgery performed by a gynecologic oncologist was associated with a 30 percent increase in overall survival in comparison with other type of surgeons, according to a 2015 study by Lucas Minig and colleagues.
Who are these surgeons?
According to the American Board of Obstetrics and Gynecology, a doctor may sit for the gynecologic oncology certification only after previously having passed the Qualifying Examination for Basic Certification in Obstetrics and Gynecology and completing additional training called a fellowship, which lasts for 32 to 48 months. Trained to go the “extra-mile” during long surgeries, these highly skilled doctors are knowledgeable in extensive surgical and resection procedures. Your gynecologist or local surgeon doesn’t have this type of training, so these are the best doctors you can opt for, even if it means traveling for surgery.
In my case, for instance, the debulking surgery performed wasn’t a typical hysterectomy done by your gynecologist: these are surgeries to remove the “gynecologic” body parts, but also to perform ”debulking,” or the removal of tumor burden that has spread beyond the ovaries. Gynecologic oncologists are trained to resect bowel and other organs where tumor has spread throughout the abdomen. In my surgery, the doctor also removed my omentum, which is the layer in the abdomen that protects the organs. Mine had cancer tumors in it.
The National Comprehensive Cancer Network (NCCN) recommends in its clinical guidelines that surgical staging for ovarian cancer be done by a gynecologic oncologist. Why is this so important? Because the best surgery and staging often results in the best treatment plan after surgery.
Sadly, evidence suggests that many women not only don’t get the correct surgery and staging, but they also receive the wrong initial treatments. Because of such observations, the National Institutes of Health (NIH), American College of Obstetricians and Gynecologists, and Society of Gynecologic Oncologists have recommended that all women with ovarian cancer except those suspected of having very early-stage cancer be referred to a gynecologic oncologist for the initial management of their disease.
Gynecologic oncologists are the stars of the show and the captains of the team, providing women with gynecologic cancers their best and most effective treatment.
If you or someone you know has ovarian cancer, the Society of Gynecologic Oncologists (SGO) provides a database of specialists.
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Kathleen Maxian is an advanced stage ovarian cancer survivor. Because of the inherited BRCA 1 gene mutation, she was predisposed to breast and ovarian cancer that could have been detected through genetic testing. Those genetic tests are now readily available to American women thanks to a 2013 U.S. Supreme Court decision that declared it illegal for any biotechnology company to hold a patent on a gene. She has been credited in helping that groundbreaking decision happen through her patient advocacy. You can find her on Twitter @KathleenMaxian.