Doctor said it was cancer, it wasn't, but news came too late
By DOUG MOORE
Feb. 16, 2018
ST. LOUIS (AP) — Last April, Harald Boerstler went in for his annual checkup. Among the results: an elevated protein level in his blood that could signal prostate cancer. The doctor told Boerstler high readings do not always signify cancer and he could wait and have the test run again or have a biopsy, a process of going through the colon to make 12 needle injections into the prostate for samples. It would require taking antibiotics beforehand and local anesthesia during the procedure.
Boerstler, 52, wanted to rule out cancer as quickly as possible. He was starting a new job the next month. Peace of mind trumped any trepidation about an invasive procedure.
The St. Louis Post-Dispatch reports that on May 1, his first day on the new job with an architecture firm, Boerstler's phone rang. It was the urologist to whom his doctor had referred him, and he had bad news: The biopsy revealed prostate cancer. It was invasive and aggressive. Lymph nodes near the prostate in addition to nerves connected to the gland would have to be removed to reduce the risk of spreading.
Thirty days later, Boerstler was in the operating room. The initial report immediately after surgery was hopeful. Doctors said the prostate had not ruptured and that the cancer was likely contained within the removed gland. The following week, Boerstler returned to his doctor's office to have a catheter taken out and to get the results of a pathology report that would ultimately lead him on a path of follow-up treatment.
"Well, we're confused," the urologist said to Boerstler. "Either the labs got mixed up or you were miraculously healed."
It turns out Boerstler's removed prostate was healthy. The biopsy results that showed the fast-growing cancer belonged to another patient. There had been a mix-up.
It was hard for Boerstler to fathom such an error. He thought any chance of that happening had been negated when he, at the urologist's suggestion, had a DNA swab taken at the same time he had the biopsy. Matched against one another, it would be nearly impossible to mix up test results among patients.
But that's exactly what happened.
Boerstler says he's telling his story in hopes of helping others, but with caveats. As a condition of a financial settlement, he cannot publicly disclose the urologist's name, the lab where his biopsy and DNA sample were sent nor the hospital with which the physician is affiliated. He also cannot talk about the amount of money he received to keep the case from going to court. He received the check this month. Boerstler did allow a Post-Dispatch reporter to review his medical records to verify the facts of his story, and the Post-Dispatch is honoring the agreement he made with the doctor's insurance company.
"It was settled to everyone's satisfaction" is the official answer Boerstler's attorney has instructed him to give.
The DNA test that gave Boerstler assurance his biopsy would not get mixed up is not universally viewed by doctors as the panacea for laboratory errors.
Dr. John Pfeifer, vice chairman for clinical affairs in the pathology and immunology department at Washington University School of Medicine, has done extensive research on biopsy mix-up results and says such mishaps are rare, at less than 1 percent.
As a result, not all physicians see the point of taking a DNA swab, a test that can add $300 to $400 to a patient's medical bill.
"There is the middle ground — the most rational place for a lot of this," said Pfeifer, who had no involvement in Boerstler's case. For example, if a woman comes in with a lump on her breast, "a (positive) biopsy result will be very much in line with what we anticipated. On the other hand, if it came back negative, then that would be an appropriate time to take a DNA swab to match against the biopsy."
A smaller group of physicians will recommend a DNA swab with every biopsy, determining that "the liability that would come with that (error) would be so high it actually saves money to do (the DNA test) in every case." And then there is a third group of doctors who understand that mistakes are ultimately going to happen and a DNA test is not necessarily going to prevent them.
Pfeifer says the more information a patient has, the better.
"Every good physician out there should welcome a conversation about (DNA) testing," he said.
At the kitchen table of his Southwest Garden home, Boerstler sat with an accordion file folder packed with medical documents, piecing together the health odyssey of the last 10 months.
Among the documents was a letter his attorney wrote to legal counsel for the insurance company.
"As a result of your client's negligent and reckless handling of his biopsy sample, Mr. Boerstler's world has been dedicated to handling one physical and emotional trauma after another," Boerstler's attorney wrote.
Boerstler's "unnecessary saga," as his lawyer wrote, included a swelling of his scrotum to the size of a grapefruit three days after his prostate was removed. At the emergency room, a series of tests were run. Ultimately, the swollen area was packed in ice.
The evening of June 7, just a few hours after his doctor told him of the mix-up, Boerstler was working his side job at Circus Flora, where he is house manager. He noticed his shirt was wet. Underneath, the surgical dressing was soaked, a yellowish red color. It was seepage from the incisions.
The doctor eventually decided to reinsert the catheter to relieve swelling he said was caused by fluid building up in Boerstler's bladder. Three of the six incisions from the surgery were leaking. Two weeks later, after the catheter was removed a second time, a bulge grew on the right side of Boerstler's abdomen and 850 milligrams of lymphatic fluid was drained. A week later, more fluid was drained.
Boerstler continues to deal with incontinence and impotence. He was given prescriptions for Cialis, then a high dosage of Viagra. Neither worked. Penile injections were offered as a remedy. Boerstler said he is not ready to try that.
"The personal enjoyment, satisfaction that comes with intimate relations, can never happen again," Boerstler's attorney wrote. "The profound impact on his psyche is beyond description."
As for the financial impact, Boerstler's out-of-pocket expenses stand at about $9,000, after insurance. That does not take into account the financial settlement.
Long before Boerstler's case emerged, Pfeifer, the professor at Washington University, looked within his own medical school to study lab mix-ups and found a few, but he needed a large database to be able to determine how frequently such errors happen.
He turned to Strand Diagnostics, a commercial lab that works with law enforcement agencies and health care professionals across the country to do testing. Strand agreed to let Pfeifer review almost 13,000 prostate biopsy results. Pfeifer was eager to do so but told Strand he would take no money for the work, the company would have no involvement in his analysis and no say in what was published.
The Strand process is a simple one: A doctor takes a DNA sample from a patient and sends it directly to the company. Attached is a bar code identifying the patient. That same bar code is used to identify the biopsy. If the biopsy tests positive for cancer, the tissue sample is sent to Strand to make sure it matches the DNA swab. If not, that signals a mix-up in the process.
Pfeifer, alongside a colleague, published their findings in the American Journal of Clinical Pathology in 2013.
Having no idea that a specimen was switched with another or contaminated by its proximity to another patient's sample "constitutes a significant patient safety and medical-legal problem because they can lead to misdiagnosis," Pfeifer said in the journal paper. However, he stressed, the rate at which this happens is unknown "because, by definition, this category of errors is not identified by standard laboratory practices."
But in reviewing the samples supplied by Strand, Pfeifer determined that the error rate was well below 1 percent. For a complete mix-up of samples between patients, it was 0.26 percent. For samples that were contaminated with cells from other patients, that number jumped to 0.67 percent. An example of a common contamination is when a piece of one person's tissue sample, unbeknownst to the lab worker, sticks to tweezers that are then used to pick up another patient's specimen.
Boerstler said one mistake is one too many and all doctors should offer a DNA sample to go along with the biopsy. Even though there was a mix-up in his case, the DNA sample eventually was used to verify that an error had been made.
"It's $350 vs. $68,000. That is the difference between a more fail-safe test and the cost to do a surgery that was not needed," Boerstler said, referring to his case. He thinks the testing process should go even further, having the lab results examined by a third party such as Strand.
"You never check your own work," said Boerstler, an architect, pointing to the construction business as an example.
"When you are building something, you better check that the contractor is working to specs," Boerstler said. "If you just ask him, of course he is going to say yes."
Pfeifer said the test results would be the same no matter which lab tested them, unless along the way it was determined that somehow either the biopsy and/or DNA results had been mislabeled. Boerstler said he took his lab report to four other doctors between the time of his diagnosis and his surgery. All agreed with the urologist: The findings were dire and a prostatectomy needed.
However "not one of them questioned the lab," Boerstler said.
Pfeifer said the medical field has seen a century of improvements when it comes to the patient testing process, but as long as a human is involved in that process, errors will be made.
An outstanding question is whether the additional costs of giving a DNA test to accompany every biopsy is worth it when 99 percent of people are not affected by lab errors. Pfeifer said research suggests that when weighing the costs of financial liability to the health care industry and the diminished standard of living for patients — which can include additional medical problems — against additional testing, "it's probably a break-even proposition."
Boerstler said he is feeling better physically. The incisions in his abdomen have healed, leaving small scars circling his navel. But his bladder continues to be unreliable, with almost hourly visits to the bathroom, and his sex life will never be the same.
His mind keeps taking him back to May, when he told his 80-year-old mother of his diagnosis. Her partner of 20 years spent the last third of their time together battling prostate cancer, and she was the caretaker. The thought of losing her son in the same way was devastating, her son said.
One pleasant surprise came during the ordeal that Boerstler said "has aged me 30 to 40 years." The day after Boerstler's partner of six years, Randy Lemmons, took him home from surgery, Lemmons proposed.
"He wanted me to know he was always going to be there for me," Boerstler said.
After the mishap, Boerstler wrote the president of the hospital where the urologist's offices are located. His plea was simple: Find the man who was initially told he was cancer-free and tell him he needs treatment immediately. The president wrote back assuring Boerstler that the man with the cancerous prostate would be tracked down.
And, yes, Boerstler's DNA was matched against the prostate that doctors said they removed from him. He is cancer-free.
"I'm feeling a mixture of 'thank God I don't have cancer' and 'what the hell did they do to me?'" Boerstler said.
Boerstler said the urologist expressed remorse, which he appreciates. But that doesn't give him back the healthy life he once enjoyed.
"He said, 'I'm so sorry I (expletive) up your life,'" Boerstler said.
"He tried to save my life and ended up (expletive) it up."
Information from: St. Louis Post-Dispatch, http://www.stltoday.com