Colorectal Cancer: Fighting to Be Heard

In March of 2013, Diane Nathaniel, then 43 and an elementary school guidance counselor at a public school in Brooklyn, New York, went for routine blood work before going in to have shoulder surgery. The results, however, were not so routine. The blood tests revealed that she was anemic. Her surgery would have to be postponed.

It wasn’t the first time Nathaniel had been told she was anemic. But her doctors were dismissive before — and now, again. They prescribed iron infusions to treat the anemia, and Nathaniel had her surgery a month later.

A few months later, Nathaniel caught a terrible cold that she couldn’t shake. She saw a primary care physician who diagnosed a sinus infection and gave her antibiotics. Blood tests showed that she was still anemic. She was treated for both problems and felt better — briefly.

In February 2014, Nathaniel caught another severe cold, and her weight plummeted from 130 to 118 pounds. She was also suffering from severe constipation. “My stomach was so distended I couldn’t close my pants,” she says. “It made me look four months pregnant.”

Then, while at work one day, Nathaniel went to the bathroom and found that she was bleeding profusely. “I thought I had gotten my period for the second time that month,” she says.

But when she went to change her sanitary napkin later that day, there was no blood on it. Nathaniel was baffled. It couldn’t be hemorrhoids, she realized, because she hadn’t had a bowel movement. Nor, clearly, was she having a period.

An Emergency and a Surprise Diagnosis

Nathaniel called a gastroenterologist, who told her to come to the office immediately. At that appointment, the doctor performed an in-office rectal exam and used a scope to examine the lower portion of her colon. The doctor found backed up stool and blood. She scheduled Nathaniel for a colonoscopy three days later.

When Nathaniel woke up after that procedure, the doctor told her she had a large, cancerous tumor in her colon and needed emergency surgery to remove it. A few days later, in March 2014, Nathaniel underwent a hemicolectomy, in which one side of her colon was removed. The surgeon also removed her appendix and 14 lymph nodes.

Nathaniel was soon diagnosed with stage 3 colorectal cancer. Had a few more weeks passed, she would have been in stage 4 of the disease, which is generally considered incurable. At stage 3, she had a chance. But treatment would be intense.

“It was devastating,” she says, of her diagnosis. “But you either retreat or you fight. I didn’t want to die. I was afraid to suffer. I had to figure it out and get determined and find the will to live.”

A Diagnosis Missed

As she processed her fear and what lay ahead, and learned more about the warning signs of colon cancer, Nathaniel realized that she was angry.

Anemia, bloating, and constipation are all symptoms of colon cancer. So is unexplained weight loss. Cancer can also compromise the immune system. The colds she could not shake were also signs. Worse, she says, she’d been complaining to doctors about fatigue, loss of appetite, and constipation for years.

No one picked up on it. “Everyone immediately offered me iron pills and stool softeners. I can’t tell you the amount of pills and prune juice prescribed to me. It was annoying,” she says.

To a certain extent, she says, she gave up trying to get help. “I felt dismissed. I was not going to keep going back and complaining. Nothing would move my bowels, but I became conditioned to it even though it was very painful and very difficult,” she says.

This sense of dismissal was not new, she says. “I think I was dismissed because of what I looked like.” Most of the time, she says, doctors “blame” Black people for being sick. “It’s always related to our diet and environment. They are always saying we are eating poorly, we must not be cooking the proper foods and we’re probably drinking a lot of soda.”

A white person with her constellation of symptoms, she says, would have been evaluated more carefully. “I didn’t get the white version of 'Let’s explore your family history,'” she says. A family history of colon cancer can raise risk. Nathaniel is adopted, and didn’t know her family history, which also could have raised red flags.

But no one pursued it. “They asked on the form [about family history] but when we got into it and I said I’m adopted they just said, ‘Oh.’”

Instead, she says, she got iron pills and lectures about her diet. It’s hard not to wonder, she says, how things would have played out had her symptoms been caught earlier. Her tumor was aggressive. Time mattered. “In the two weeks while waiting for surgery my tumor went from 5.7 centimeters to 7.5 centimeters,” she says.

Finding Her Voice

Unfortunately, it didn’t get any easier to manage the medical system after her diagnosis. Getting a second opinion was also difficult. Nathaniel contacted surgeons at three major New York City hospitals, but struck out. “They couldn’t see me for months,” she says. She didn’t have months. “They weren’t nice on the phone. They were disparaging.”

Then her surgeon scheduled her with the same hematologist who had given her the iron infusions for all those months, without probing for the cause. Nathaniel panicked. “I couldn’t believe I was going back to the same person who missed my diagnosis,” she says.

Nathaniel summoned her courage and confronted him about the missed opportunities. In the conversation, she says she realized she had been so accustomed to having her symptoms dismissed that she had not told the doctor all of them.

He apologized, she says, saying he would have done things differently in retrospect.

Nathaniel decided to accept the doctor’s apology. Not because she felt that much better about it, but because she needed to move ahead. “I just wanted the cancer gone. I needed to start chemo right away,” she says.

Successful Treatment

Doctors told her she would need to take six weeks off from work to recuperate from surgery. She did not have that much sick leave. Her colleagues stepped in and donated their sick time to her. She then had to undergo 12 rounds of chemotherapy over the course of eight months.

However, she found she had to stay home at least three days after treatment because it made her very sick. No one could donate more sick time. She worked through the end of the school year, but by September 2014 she had to take a medical leave of absence that lasted until December, losing 40 percent of her salary while she was out.

Nathaniel completed her last chemotherapy in November 2014, just before Thanksgiving. She was alive, but battered. “I had mouth sores and neuropathy in my feet and fingertips and lost 30 pounds,” she says. Slowly, she recovered. She’s been disease free ever since.

Life After Colorectal Cancer

Nathaniel went back to work as a school counselor. But she also went back to school, herself. In May of 2020 she earned an advanced certificate in public health from SUNY Downstate in Brooklyn. She did it, she says, because she wants to be able to talk intelligently to people within her community about colorectal cancer.

“I want to advocate for others because I didn’t do it for myself,” she says.

As part of helping people find their voice, she created The Village Lighthouse, a firm that teaches patients how to advocate for themselves and trains healthcare professionals about how to treat patients. She also works as a volunteer for the American Cancer Society Cancer Action Network, (ACS-CAN), which lobbies for legislative change, like the recent Henrietta Lacks bill, which aims to increase access to clinical trials for Black Americans. And she helped co-create Beat Stage 3, a nonprofit organization dedicated to self-love after cancer treatment.

Nathaniel sees all of this as the natural evolution of her close call, and part of her journey as a survivor. “I’m just a normal person wanting to save as many lives as I can,“ she says.