Self Advocating for Your Health
- Writer Taryn Hillin shares her story of finally being diagnosed with cancer after a doctor dismissed her concerns.
- Hillin, in her mid-30s, was diagnosed with high-grade small cell neuroendocrine mixed with adenoma-carcinoma of the cervix in 2019. She was told she had a 7 percent chance of survival, but she’s now happily been cancer free for two years.
- Being your own advocate can be key to coming to a correct cancer diagnosis and obtaining the best treatment possible while dealing with a diagnosis.
Hillin, in her mid-30s, was diagnosed with high-grade small cell neuroendocrine mixed with adenoma-carcinoma of the cervix and told she had a 7 percent chance of survival. But thanks to her self-advocacy, she received her diagnosis in time for the successful treatment that’s gotten her to where she is today.Read More
In a recent piece for the The Huffington Post, for example, Hillin shares the story of how she actually arrived at her correct diagnosis and what her cancer journey has looked like from there.
In October 2019, Hillin’s new OB-GYN told her that she had a “two-centimeter tumor on [her] uterine cervix.” And despite Hillin’s concerns, the doctor told her not to worry because she likely didn’t have cancer. Still, Hillin was understandably terrified.
“As a non-doctor, when I hear the word ‘tumor,’ my first thought is cancer. Hers was not,” she wrote. “‘No, no,’ Dr. Can’t Be Bothered assured me. ‘This is not how cancer behaves.’ Then she added a sentence I’ll never forget: ‘For you to have cancer at this age, with this medical history, it would be like winning the lottery.'”
But hearing those words did not make Hillin feel any better. And even when the doctor said she’d need a biopsy because the radiology report said the tumor was “of concern,” she dismissed Hillin’s attempts to schedule it as soon as possible. Instead, she told her to be patient. She said there was no rush since it was probably “fibroids, a benign growth, maybe a polyp, or a million other little non-cancer things.”
“She made me feel like I was overreacting, like I was ignorant of how ‘these things work,'” Hillin wrote. “I peppered her with questions about the Big C, to which she kept saying, ‘No, no, that’s not how cancer behaves.’
“I let it go ― after all, she’d gone to medical school and I hadn’t. She wore a white coat, and I was a 34-year-old whose work wardrobe still included yoga pants. It was not my place to argue with her.”
But Hillin’s gut-reaction would prove to be more than warranted. After begging her old OB-GYN for an emergency appointment after explaining the situation, Hillin underwent another ultrasound, a colposcopy and an in-office biopsy with no anesthesia and no surgery required. And thank goodness she did.
“In my case, the casual dismissal of my symptoms almost cost me my life,” she wrote. “Turns out, I had won the lottery.”
Hillin was ultimately diagnosed with high-grade small cell neuroendocrine mixed with adenoma-carcinoma of the cervix and told she had a 7 percent chance of survival.
“After my diagnosis, my entire world turned upside down,” she wrote. “It was an onslaught of appointments, scans, and hard bathroom-floor crying. My imaging showed only ‘local disease,’ which means it had not metastasized to other parts of my body. My surgical oncologist said she was relieved. ‘Often patients with neuroendocrine cancer walk in at stage 4 ― it’s that aggressive,’ she said. ‘You’re lucky you came when you did.’
But even with the quick biopsy, she ended up having stage 3C cancer. From there, she underwent a radical hysterectomy where they removed her uterus, cervix, ovaries, fallopian tubes, a third of the vaginal canal and multiple pelvic lymph nodes. She also had adjuvant chemotherapy and radiation.
Fast forward to today, and she’s been cancer free for two years. Her oncologist even refers to her as a “miracle.”
“In order for me to survive this cancer, everything had to go my way,” she wrote. “I was fortunate that the second doctor I saw spent over an hour with me, listened to my concerns, tested me for everything on the spot and cared enough to pay attention to me. If my surgery, chemotherapy or radiation had been delayed by four weeks… it would have cost me my life. Instead, a team of doctors stepped up and recognized a needle-in-a-haystack cancer.”
Gracious for the gift of life that she’s been given, Hillin is determined to educate people about what she went through in order to encourage others – especially women – to always advocate for themselves.
“Ultimately, if battling a rare and deadly cancer has taught me anything, it’s to never stop fighting for yourself,” she wrote. “I spent countless hours fighting with insurance, begging labs and imaging centers for earlier appointments, and emailing every oncologist in the country for help. It’s your health, and your life. If you have to ruffle a few white-coated feathers, so be it. You’re worth it.”
Advocating for Your Health
Whether you are currently battling cancer or worried that you might have it, it’s always important to advocate for your health. You have every right to insist that your doctors investigate any possible signs of cancer – a lesson we can all learn from Hillin, who, thankfully, trusted her gut.
“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. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. “And I think that that’s totally fair. And me as a health professional – that’s what I do for all of my patients.”
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,” she said. “I think women, especially young women, are really used to being dismissed by their doctors.”
Figuring out whether or not you actually have cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way to ensure you’re getting the care and attention you need.
Another thing to remember is that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it’s essential to talk with multiple medical professionals.