The burning pain in Sarah Dickinson's right breast started when she was pregnant, and doctors explained it as a side effect of her developing milk ducts. But an ultrasound after she gave birth showed something more serious.

By Korin Miller
August 27, 2020
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This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.

Sarah Dickinson was just two weeks pregnant when she started to develop a burning feeling that affected her entire right breast. At first, she assumed it was a weird symptom of pregnancy, but the pain persisted.

“It was on and off, mainly in the evenings,” Dickinson, 37, tells Health. “It would take my breath away—the intensity of the burning sensation would just knock the wind out of me.” The first-time mom found that applying heat to her breast helped, and she chalked up her symptoms as “just hormonal.”

But the burning sensation continued. Dickinson brought it up when she went to her ob-gyn’s office—and she went often. Because she was 35 at the time, hers was considered a "high risk" pregnancy, and that meant having doctor appointments every month. “I saw four different providers and told each one about the burning,” she says. Every time, they did a manual breast exam, and then concluded that the burning sensation was the result of her milk ducts coming in to prepare for breastfeeding.

Dickinson, who works as a clinical trial manager for a cancer research, brought up the possibility of breast cancer a few times. “I asked about it, and I always got the answer that ‘breast cancer doesn’t hurt,’” she says. “I never really thought I had cancer. It just made sense to me that it could be an explanation.”

At the same time, the nipple on Dickinson’s right breast was changing. That nipple had already been “kind of inverted,” she says, but it became puckered whenever she had a bout of pain. It also turned dark purple.

The burning sensation continued through her pregnancy, and Dickinson says she kept mentioning it at doctor visits. “It was always just as intense, and I was always told that it was my milk ducts coming in, and that breast burning is common in the early stages of pregnancy,” she says. “It made sense to me—and I had never been pregnant before.”

When she was five months along, Dickinson saw a new ob-gyn, who sent her to get an ultrasound of her breast, just in case it turned out to be something more serious than developing milk ducts. “They found a cyst, about a centimeter in size, right away,” says Dickinson, but the ultrasound indicated that the cyst was “completely normal,” or benign.

According to the American Cancer Society (ACS), it’s common for women to have noncancerous breast lumps that turn out to be caused benign fibrous tissue or fluid-filled, round or oval cysts. While both can occur in women at any time, they’re most common in women of child-bearing age.

Even though Dickinson’s cyst was considered normal, her new doctor wanted to do follow-up scans. Dickinson had another ultrasound of her breast done when she was nine months pregnant, and she learned that the cyst hadn’t grown and was still continued to appear benign.

Dickinson had her baby, a boy she and her husband, Andrew, named Fin, in December. “The burning stopped immediately,” recalls Dickinson. “As soon as Fin was born, it was just gone.” She began breastfeeding Fin, but only through her left breast. He wasn't able to latch on to her right breast, which had the inverted-looking nipple, she says.

Dickinson was scheduled for a follow-up ultrasound of her breast three months after she had Fin, but the COVID-19 pandemic that began in March pushed her scan back a month. “I thought it was fine; I wasn’t concerned at that point," she says. "The burning was gone. I figured they just wanted to make sure the cyst was OK."

But things weren’t OK, as Dickinson realized when she had her visit. “As soon as the ultrasound technician put the wand on me, the color drained out of her face,” she recalls. “She brought in the doctor, who said, ‘It’s grown. There’s something else there we need to see.’”

Dickinson was immediately sent for a mammogram and underwent more ultrasound scans of her breast. “Then I waited in the room for about 10 minutes. When the doctor came in, I knew it wasn’t good,” she says. “I instantly started crying. I already knew it wasn’t good.”

Dickinson was told she needed a biopsy for her cyst, which was tucked under her nipple. “That’s why it was undetectable to me and the doctors who were feeling for a lump,” she says. Four days later on May 1, her doctor called with the results: She had stage one HER2 negative breast cancer.

HER2 negative breast cancer means the cancer cells don’t have a large amount of a protein called HER2 on their surface, according to the National Cancer Institute (NCI). Cancer cells that are HER2 negative may grow more slowly and are less likely to come back or spread to other parts of the body than cancer cells that have a large amount of HER2 on their surface. Stage one indicates that Dickinson’s cancer hadn’t spread to other areas of her body.

While Dickinson says she had a pretty good idea she had cancer before she got the call, she was still stunned by the diagnosis. “It just took my breath away that this was actually happening,” she says. She was also upset that no doctor ordered an ultrasound earlier in her pregnancy. "It's frustrating to think that someone could have ordered an ultrasound sooner," she says.

Dickinson was referred to an oncologist, who is unsure of how long the tumor has been in her breast. “They think it either just popped up, or it’s been there for a long time and the hormones from pregnancy lit it up,” she says.

On May 29, Dickinson underwent surgery to remove the tumor. In June, she had a second surgery to remove her nipple and put in a port for chemotherapy. She was warned that chemo could leave her infertile, so she underwent IVF—a process she describes as “hell”— to try to give Fin a sibling in the future. "For the fertility preservation, we chose to freeze embryos, as the success rate during the defrosting process is much higher than freezing eggs," she says.

Since July, she’s undergone four rounds of chemotherapy, which will be followed by five weeks of radiation therapy. After that, she will likely start taking tamoxifen, a breast cancer drug that blocks the effects of estrogen in breast tissue to help prevent the cancer cells from coming back.

Dickinson has mixed feelings about her journey to a diagnosis. “It’s a confusing feeling because I know the doctors were doing the best job they could,” she says. “They did all of the normal things other than an ultrasound, but I do feel that I should have been sent for an ultrasound sooner. I kept bringing this up.”

Dickinson says she’s aware that she’s not the first young woman whose cancer was missed early on. “I know that some women get blown off because of their age,” she says. “If I hadn’t seen [her new doctor] and if the burning hadn’t happened or stopped during my pregnancy, I never would have gotten that ultrasound. My cancer could have been more advanced by the time it was detected.”

She feels that her baby also helped lead to her diagnosis. “In a way, Fin saved my life,” she believes. “Without the pregnancy, I never would have had that burning sensation.” Dickinson says she’s also “grateful” that she was diagnosed after Fin was born. “I feel like I really enjoyed my pregnancy, and this is happening on a better timeline for me,” she says. “Fin is young, and he won’t remember this.”

Now, Dickinson is urging other women to speak up if something doesn’t feel right. “You know your body better than anyone,” she says. “If things don’t feel right, there’s something wrong. If you’re not getting the answer that feels right to you, speak up more often. Otherwise, your fight could be so much harder and longer.”

If you have a story to share about being misdiagnosed, email us at misdiagnosed@health.com and join our Misdiagnosed Facebook community to talk to women who share the same struggle.