Breast cancer patients seek out more information

Sometimes it’s not just the diagnosis of breast cancer that is upsetting but also the way the news is delivered.

When Lori Turner received a call after undergoing a core needle biopsy due to an abnormal mammogram, she was disappointed in the way her results were conveyed.

“My gynecologist’s physician’s assistant called me,” Turner said. “It was 24 hours after my biopsy and she said, ‘I’m sorry but we have to inform you we found some cancer.’ And after that, she just read right from the pathology report,” which was very technical.

Turner was diagnosed with ductal carcinoma in situ breast cancer or DCIS.

The PA said there was good news in that it was not invasive and was stage zero, explaining that “in situ” meant the cancerous cells hadn’t broken out of the milk ducts.

“What? It hasn’t broken out? I didn’t understand,” Turner said. “I didn’t even know there was such a thing as stage zero.”

A few days later, trying to make sense of things, she picked up her report and learned how small the DCIS was. “The largest contiguous focal point was five-tenths of a centimeter — the size of a pencil eraser.”

She soon learned that her cells could have been classified as a small precancerous lesion, although her diagnosis included a minuscule tumor. In fact, she was informed during her July 2019 lumpectomy that it probably had been mostly removed during the core needle biopsy in January.

Turner is not the first to have concerns about how patients are told their diagnosis. Through her experience and that of others, she now believes that many DCIS patients are overtreated and may not need such drastic interventions.

According to the American Cancer Society, DCIS is non-/pre-invasive breast cancer, meaning the cells that line the ducts have changed to cancer cells but haven’t spread into nearby tissue. DCIS is labeled this way because it can become invasive and metastasize, but there’s not yet an effective prediction method.

It is estimated that over 60,000 women annually are diagnosed with DCIS. Patients can usually choose between breast-conserving surgery and simple mastectomy.

Social media is a relatively new resource for patients, families and friends. Turner was helped by the Facebook page DCIS 411 and its corresponding website, which “provides up-to-date research, personal stories and valuable resources that offer support, less invasive treatment options and peace of mind for women diagnosed with DCIS.”

“The majority of women, driven by an overwhelming sense of fear and confusion, rush into lumpectomies, mastectomies, weeks of daily radiation, toxic drugs with harsh side effects along with a future filled with excessive mammograms and biopsies,” said Donna Pinto, the administrator of DCIS 411.

Even within the medical community, there is great controversy about the “overtreatment” of DCIS.

“We are told that 50 percent believe it is a cancer precursor and 50 percent believe it will never progress,” Pinto said. “There is now a movement among experts to take the word ‘carcinoma’ out of the diagnosis” to undo some of the hysteria.

When Pinto was diagnosed with DCIS, she was told she would need a wide excision biopsy (essentially the same as a lumpectomy). But at a presurgery appointment, she was told she did not have DCIS but rather ADH (atypical ductal hyperplasia).

“I still do not know why a nurse would tell me over the phone that I had DCIS when I didn’t,” she said.

At a follow-up visit after the procedure, she was told that she had been upstaged to DCIS and although it was considered stage zero, it would be treated as cancer. Given two options — partial mastectomy plus radiation or a mastectomy — she opted for neither, choosing to treat it naturally and holistically. Pinto says intuition remains her best resource when researching ways to live more healthy.

“We all have a choice. We do not need to buy into the fear and hysteria. … No matter what anyone says, only you will know what is the right path.”

Another area of frustration for patients is the insertion of titanium clips. According to many women, they have not always consented to or been informed about having markers placed inside their breasts.

According to the National Breast Cancer Foundation, doctors may insert a very small marker inside the breast during core needle biopsy or lumpectomy procedures, marking the location so future physicians can locate the abnormal area. Although many medical professionals claim these markers cannot harm, some women have experienced irritation at the site.

For survivor Lisa Nash, her experience led her to testify on behalf of an act promoting patient engagement in health care decisions before the Massachusetts State House in 2011. She is still waiting for changes to be made.

During her lumpectomy, five titanium clips were left inside without her knowledge even though she had already opted out of chemotherapy or radiation. A serious allergic reaction ensued, causing additional treatments that could have been avoided.

“Nobody has the right to place something in me … without asking my permission first,” Nash said. The surgeon would not admit that the markers could have caused Nash’s symptoms.

Nash believes in informed consent for all usage of metals in medical devices. According to healthcentral.com, reactions to titanium clips are rare. Thousands of women have markers inserted into their breasts each year, and the vast majority experiences no problems.

However, even with the possibility of an adverse reaction, some believe that the benefits of the clips outweigh that. After meeting with her hospital to promote policy change for the inclusion of informed consent, Nash was told that it would simply take too much time to explain to every patient the possible consequences of an allergic reaction.