If I’d Listened To My Doctor, I Would Be Dead Right Now

The medical system in most countries does not function the way it should. Not only do far too many people lack proper access to it, but the professionals working in the field are overworked and burnt out. Systems are set up to help people leave many un-helped, undiagnosed, or worse. This woman survived a rare and deadly cancer because she advocated strongly for herself in a broken medical care system. This is her story.

“If I’d Listened To My Doctor, I’d Be Dead”

I will start off by saying that this article is not meant to promote distrust in doctors or the medical system as a whole. They are there to help you and you should still go see them when you have a problem. Rather, this article is meant to remind you that doctors are humans. Humans make mistakes, have flaws, need rest, get overwhelmed by life, and the list goes on – doctors included. The goal of this article is to remind you that you need to take ownership of your health and the care you receive, which includes getting second opinions and advocating for yourself. If Taryn Hillin hadn’t done that, she’d be dead right now. (1)

Taryn’s new Ob-Gyn gave her some pretty scary-sounding news: A two-centimeter tumor on her uterine cervix. The doctor seemed very unconcerned. Taryn, on the other hand, was terrified. In tears, she asked the doctor if she had cancer.

“No, no,” the doctor said. “This is not how cancer behaves. For you to have cancer at this age, with this medical history, it would be like winning the lottery.”

Her medical chart described the tumor as “of concern”, but her doctor wasn’t concerned at all. She said Taryn needed a biopsy and assured her that it was most likely not cancer, but possibly something like fibroids or polyps. Then, she told Taryn that she would schedule the biopsy for four weeks from now because she was full and then would be on vacation for two weeks. Taryn begged for something sooner, but the doctor said it wasn’t possible.

Related: Doctors Misdiagnosed Both My Friend And Me. I Lived. She Didn’t.

Putting The Matter In Someone Else’s Hands

Taryn couldn’t shake the feeling that something was terribly wrong. She was also angry that the doctor wasn’t taking her seriously. When she got home, she called her old Ob-Gyn in tears and begged for an emergency appointment.

Her old doctor got her in less than two days later. He listened to her, did another ultrasound, and then walked Taryn through everything they were going to do next. He told her they would do everything they could to figure out what was going on inside her uterus.

“Turns out, I had won the lottery,” Taryn said. “The biopsy revealed I had a very rare cancer called high-grade small-cell neuroendocrine. I would need a radical hysterectomy ― where they remove the uterus, cervix, ovaries, fallopian tubes, a third of the vaginal canal, and multiple pelvic lymph nodes ― along with adjuvant chemotherapy and radiation.”

This is an extremely aggressive cancer. Taryn was very lucky that hers was still localized and had not spread. Her oncologist told her that usually, patients walk in with stage 4 because of how quickly it grows. Still, Taryn was already stage 3 and the survival rate was grim. Had she waited four weeks for the biopsy, however, the prognosis would have been much worse.

“Weeks later, after my surgery was completed, I finally got a call from Dr. Couldn’t Be Bothered’s office. They wanted to schedule the biopsy she’d put off. I laughed. “Are you kidding me?” I asked. “I’m about to start chemotherapy!” Then I angrily hung up the phone.”

Lucky To Be Alive

Taryn knows that she is lucky to be alive. Had she not gone with her instinct, sought out a second opinion, and advocated for herself every step of the way, she may not have lived to tell her story. She battled with insurance companies for coverage, labs for earlier test times, and reached out to oncologists all over the country for help. Taryn survived, but for many, the ending is much more tragic.

Second Opinions and Self-Advocacy

As I already said, this article is not meant to vilify doctors. They are simply human beings navigating an inperfect system. This is why getting a second (and even third) opinion is so important, particularly if you are feeling dismissed or like your doctor isn’t taking you seriously enough. For Taryn, her gut feeling told her something was wrong, and she was right. Of course, there was a chance that she was incorrect and it was just a polyp or fibroids or something else much more benign. If she hadn’t taken her care into her own hands, however, she would be dead.

There are many scenarios in which you should seek out a second opinion. This doesn’t mean your first doctor is wrong or bad, it just means that you are making sure something wasn’t missed. (2) Reasons to get a second opinion are:

• Symptoms persist after treatment is completed
• Your doctor diagnoses a rare disease
• If the recommended treatment is risky, involves surgery, is invasive, or could have life-long consequences
• The diagnosis is cancer
• Your gut feeling is something isn’t right

This is particularly important for women and minorities. Studies show in the United States that women and minorities (especially female minorities) are more likely to be dismissed by doctors, mis- or undiagnosed, and more likely to die because of that unequal treatment. (3, 4) Trust your doctors, but always be present and proactive in your own care. It could save your life.

Keep Reading: My life was upended for 35 years by a cancer diagnosis. A doctor just told me I was misdiagnosed.