Advocating for Your Health as a Woman
- Jessica Sanders first started feeling a constant, sharp abdominal pain when she was 15. But doctors gave her a slew of incorrect reasons for her pain including period cramps, hormones, pregnancy, a urinary tract infection, a bladder infection and even restricting pants. She eventually was diagnosed with a rare and aggressive type of ovarian cancer after she went to the emergency room years later.
- Now, Sanders shares her story to raise awareness for ovarian cancer and encourage other women to advocate for their health. She even launched Fight for Female Health, an organization that sells T-shirts and sweatshirts to raise money for the Small Cell Ovarian Cancer Foundation.
- Ovarian cancer is called the cancer that whispers because its symptoms can be very vague. One of our experts wants women to keep an eye out for a variety of possible symptoms including feeling full earlier than you usually would when your appetite is strong, feeling bloated, changes in your bowel habits and pain in the pelvis.
- Sadly, we've heard many stories of women's concerns being dismissed by doctors. That's why being your own advocate can be key to getting a correct diagnosis and obtaining the best treatment possible while dealing with a diagnosis.
- One cancer survivor told SurvivorNet she recommends asking many questions, so doctors "earn that copay."
Struggling with a constant, sharp abdominal pain in high school forced Sanders to sit out at soccer practice and even leave school early. But visits to many doctors over the years never resulted in a correct diagnosis.
Read More“The doctors were saying nothing’s wrong with her, she’s fine, so I stopped complaining about my pain because I was dismissed,” Sanders said. “I just started to feel like I was crazy.”
Reaching a point of pain so intolerable that she struggled to even eat breakfast with her family, Sanders decided to go to the emergency room in November 2021. That’s when doctors discovered a nearly-7-inch cyst on her right ovary that needed removal.
During surgery, doctors also discovered the cyst had ruptured and a tumor was wrapped around her right ovary leading them to remove that ovary altogether.
Her pain eventually started subsiding after she was sent home, but more news arrived in December when she was told she had a kind of ovarian cancer called small cell carcinoma of the ovary, hypercalcemic type a rare and highly aggressive ovarian malignancy. This meant she would need to undergo further treatment in the form of six rounds of chemotherapy and a stem cell transplant.
“Even with my family’s support, I felt so lonely because I now have this disease in me and I can’t control it. It was really frustrating and shocking, especially being a super healthy person,” Sanders said. “All my friends are partying in college and I’m sitting in a chair, surrounded by a bunch of people a lot older than me with cancer.”
Sanders was declared cancer-free in April 2022, but she still struggles with symptoms from treatment like brain fog, nausea, fatigue and neuropathy.
“I went back to school, I started training with my soccer team again, obviously very slowly. But I’m still recovering from stem so I feel it all the time,” she said. “I feel trapped in a 50-year-old body almost because of all the things that I went through. So it’s definitely slowed down my body a lot more, which is hard because I was such an active person.”
But everything she’s gone through has lit a fire in Sanders. She shares her story to raise awareness for ovarian cancer and encourage other women to advocate for their health.
“People need to really speak up for themselves and not be afraid to tell doctors when they’re wrong and tell them to keep pushing for answers,” she urges. “This isn’t just happening to me, it’s happening to women all over the world.”
She even launched Fight for Female Health, an organization that sells T-shirts and sweatshirts to raise money for the Small Cell Ovarian Cancer Foundation.
“As females, we are very much overlooked because of our reproductive organs,” Sanders said. “A lot of my friends don’t even want to go to the OB-GYN because they’re scared and they don’t know what questions to ask.”
Understanding Ovarian Cancer
Ovarian cancer is when the ovaries which produce the sex hormone, estrogen, as well as eggs become cancerous. Women have two ovaries, one on either side of the uterus.
Feeling Overwhelmed by Your Ovarian Cancer Diagnosis? Here Are Some Ways to Regain Your Equilibrium
The fallopian tube, which brings the egg from the ovary to the uterus for fertilization, is actually where many ovarian cancers begin. First, a few cancerous cells develop on the fallopian tubes, then these cells stick to the ovaries as the fallopian tubes brush over the ovary. From there, the cancerous cells grow to form a tumor.
Your risk for ovarian cancer may be increased if you have gone through menopause, have a gene mutation like BRCA1 or BRCA2, are obese or overweight, had your first pregnancy after age 35 or never carried a pregnancy to full-term, have a family history of cancer or used hormone replacement therapy. You should talk with your doctor about your potential risk for the disease.
Symptoms of Ovarian Cancer
Ovarian cancer is known as the cancer that whispers because symptoms are vague and sometimes similar to regular menstrual cycle fluctuations. Dr. Beth Karlan, a gynecologic oncologist with UCLA Health, says that ovarian cancer can be difficult to recognize with its subtle symptoms.
Ovarian Cancer: The Cancer that Whispers
"Ovarian cancer does not have any specific symptoms," Karlan said in an earlier interview with SurvivorNet. "It's often referred to as the cancer that whispers in that it has symptoms that are really very vague… and nothing that may bring your attention directly to the ovaries."
But Dr. Karlan still wants women to keep an eye out for a variety of possible symptoms.
"The symptoms include things like feeling full earlier than you usually would when your appetite is strong… Feeling bloated," she added. "Some changes in your bowel habits. Some pain in the pelvis. These are symptoms women may have every month. These are not very specific. But what we've found from multiple studies, it's this constellation of symptoms."
Dr. Stephanie Wethington, director of the gynecologic oncology survivorship program at Johns Hopkins Medicine, previously told SurvivorNet that prevention for ovarian cancer is an important area of focus.
"We must remember that prevention is key and advocate for all women to discuss their family history and individual risk factors with their doctors and ask whether there are risk-reducing options available to them," Dr. Wethington wrote.
Our advice to readers: See your doctor if you feel like something is off. Given that ovarian cancer can have no symptoms or a myriad of symptoms that you might easily brush off as nothing, it's important to always seek medical attention when your gut is telling you something might be wrong. That doesn't mean we should assume the worst every time we feel bloated or have a change in appetite, but it does mean that we should always try to listen to the signs our body is giving us.
How to Advocate for Your Health as a Woman
Jessica Sanders’ ovarian cancer story is, sadly, not the first of its kind. In fact, we've heard many women talk about how their health concerns were not taken seriously prior to a very serious diagnosis.
In a previous interview with SurvivorNet, April Knowles explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake.
Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn't feel right.
I Wanted My Doctor To Like Me, Then He Missed My Breast Cancer
"I wanted my doctor to like me," she said. "I think women, especially young women, are really used to being dismissed by their doctors."
Jenny Saldana is another woman who's spoken up about advocating for yourself. She says she was told "you can't keep coming back here taking up resources for women that really need them" when she was trying to get her breast cancer diagnosis.
"The squeaky wheel gets the oil," she said as advice for others.
Advocating For Yourself While Navigating the Medical World
Evelyn Reyes-Beato feels similarly. As a Latina like Saldana and a colon cancer survivor, she urges people to "get knowledge" so they won't feel intimated by their doctors. She wants to remind others that they have a right to ask questions and make physicians "earn that copay."
Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, previously told SurvivorNet that healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources.
"The truth is you have to be in tune with your body, and you realize that you are not the statistic," he said.
Be Pushy, Be Your Own Advocate… Don't Settle
Dr. Murrell says not every patient will "fit into" the mold, so it's important to "educate yourself and be your own health care advocate."
"Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn't work, what the next plan is," Dr. Murrell said. "And I think that that's totally fair. And me as a health professional that's what I do for all of my patients."
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