The website Nine Girls Ask? welcomes all women who have questions about ovarian cancer — and really, what woman doesn't? Joan Wyllie's nonprofit organization — named for her, her three daughters, and five granddaughters to equal nine — asks simply, "Why is there neither a test nor cure for ovarian cancer?"
Good question. In that vein, Nine Girls Ask? is a place for asking questions and getting answers. The organization raises awareness and funds for ovarian cancer research, but most importantly offers one-on-one patient advocacy and hope from beginning of diagnosis to, hopefully, “no evidence of disease."
Joan's ovarian cancer journey
In October 2007, Joan began experiencing gastrointestinal problems, bloating, shortness of breath, and many other symptoms indicative of ovarian cancer. After six months of being misdiagnosed by nine physicians, she says she knew something was wrong. She insisted upon exploratory laparoscopic surgery, which, in February 2008, resulted in the diagnosis of stage 4 ovarian cancer.
Twelve days after diagnosis, Joan endured a seven-hour surgery that removed "hundreds of tumors.” She received six rounds of chemotherapy, which resulted in numerous complications and several trips to the emergency room. But there is light here: Joan has had no evidence of disease for the last 10½ years.
Ovarian cancer afflicts more than 22,000 women each year and causes more than 14,000 deaths, says the American Cancer Society. Since Joan's experience with ovarian cancer, she has thoroughly educated herself about the disease with the purpose of sharing her knowledge and helping other women. “I did not want one woman to be afraid," she says.
Joan and all members of Nine Girls Ask? invite all women with ovarian and gynecological cancers to become involved with this powerful cause. As an ovarian cancer survivor, Joan knows her stuff and shares some of it here with you. Here are her best suggestions, gleaned from experience, about how to deal with the often formidable challenges of ovarian cancer.
1. Don’t rush this.
“When you first receive the news about ovarian cancer, it's OK to shut the door and cry. Go in your bedroom and pound your pillow or cry. Let your emotions flow, so you can transition yourself to fight.
If you've just been diagnosed, remember that this disease did not start overnight, so try not to panic. Take time to breathe, collect your thoughts, and do your research. You only get one chance at that all-important first surgery. Take time to try and find the most meticulous gynecologic oncologist surgeon — one that is near you or that you can reasonably travel to — who's also within your healthcare network. Ask Nine Girls Ask?, other doctors, family, and friends for help finding this person.”
2. Familiarize yourself with integrative medicine.
“Integrative medicine aims to bring conventional and complementary approaches together in a coordinated way. I have found this very helpful for me. It involves eating anti-inflammatory foods, practicing meditation — and doing visualizations — in conjunction with transformational breathing. I've taught myself how to best take care of my body, and you can do that, too. Enhance your spirituality or faith, and reach out for support to your church, your God, your friends, and your family.”
3. Stay organized.
“You may feel like you have so much on your plate, and you do. Remember to request all copies of your pertinent medical records, including all CT scans, MRIs, blood work, and biopsies. Yes, doctors' notes are important, but not as important as those diagnostic results. You may find working through your healthcare provider's patient portal helps you obtain these, or you may want to get them directly from your doctor. Make sure to stay on top of this, because no one is going to do it for you.”
4. Maintain optimism.
“During the last 10 years, I definitely see the needle moving at a faster pace, offering women with ovarian cancer more options. Research is progressing at a much faster rate. More clinical trials are now offered to women who recur, which happens to be the most difficult challenge we face. There are so many different types of ovarian cancer — it is a difficult cancer to treat. Innovations such as tumor profiling, targeted therapy, and immunotherapy are just a few examples of how treatment has changed during the past decade.”
5. Share and share alike.
“It's very healing during treatment if you reach out to other women who've been diagnosed. Share your experiences, notes, and any information you've gained along the way with those women, and while you're helping them, you'll be healing yourself. It is a miraculous way for your experience with your own disease to make a difference!”
If you or someone you know wants more information, Joan welcomes anyone who may want to contact her and Nine Girls Ask? directly at 619-708-7891 or firstname.lastname@example.org.