Medical mystery: It took a year to find out why she had bloody urine

In October 2016, Kathy Hipsher, a 45-year-old sign-language interpreter and Grand Canyon river guide, was preparing to lead a 16-day river trip when she noticed that her urine was tinged with pink.

“I thought, ‘That’s weird.’ I hadn’t eaten beets,” which could cause the temporary discoloration of urine, Hipsher recalled. She had no pain or other symptoms.

A urinalysis performed the following day, after the bleeding was no longer visible, confirmed the presence of red blood cells and protein in her urine. Proteinuria can be linked to diabetes, high blood pressure, or a family history of kidney disease, none of which applied to Hipsher. Her primary-care physician ordered a CT scan of her abdomen and pelvis and referred her to a urologist.

The CT scan revealed the presence of two tiny, non-obstructing kidney stones, neither in a problematic location. The radiologist also noted atrophy on the upper portion of her left kidney, which he said “most likely represents a chronic injury.” The urologist performed a cystoscopy, a test that inspects the bladder; it was normal. The doctor suggested that Hipsher drink more fluids, which could help stave off a future kidney stone attack.

After the bleeding recurred, Hipsher consulted a second urologist, who sent her to a kidney specialist.

The nephrologist suggested that the intermittent bleeding might be caused by IgA nephropathy, a disease that damages the filters inside the kidneys.

The nephrologist advised continued monitoring of Hipsher’s kidneys, which were functioning normally. He was reluctant, for reasons Hipsher said he never articulated, to perform a kidney biopsy, which could definitively determine whether IgA nephropathy was the problem.

In May 2017, with the bleeding a daily occurrence, Hipsher decided she needed a new nephrologist.

The second nephrologist scheduled a needle biopsy for the following month. The test ruled out IgA nephropathy and failed to find anything that would explain the bleeding. Sometimes no cause can be found and the condition is labeled idiopathic hematuria.

Hipsher, of Bellevue, Idaho, was not reassured; her urine was sometimes bright red. She decided she needed out-of-state expertise, so she called a prominent medical center and wangled an appointment. In July, she spent four days undergoing an extensive nephrology work-up, during which, a pathologist reviewed the CT scan performed nine months earlier, but did not repeat it.

These doctors couldn’t find an explanation, either.

When Hipsher asked the nephrologist if he could rule out cancer, she remembers he brushed it aside. The first kidney specialist had told her she was “too young” for kidney cancer.

For the next few months, Hipsher concentrated on her recurring and difficult-to-treat stomach problems, which were attributed to small intestinal bacterial overgrowth, a condition that can cause nausea, diarrhea and fatigue, and later a parasitic infection. The primary-care doctor she had been seeing told Hipsher she was stumped and sent her to Thomas Archie, a family medicine specialist whose practice combines conventional Western medicine and alternative practices.

In October, she returned to the second urologist to request a CT scan for the worsening bleeding, which included what appeared to be blood clots. The doctor, she said, balked.

“I wouldn’t radiate you again,” she remembers the specialist saying.

When Hipsher persisted, the urologist agreed to consult a colleague in Boise to see whether a CT scan was advisable.

Two weeks later, the urologist ordered the scan to check for an abnormal tangle of blood vessels known as an arteriovenous malformation, which can sometimes cause bleeding.

The imaging test revealed something quite different.

The test found a grape-sized mass on Hipsher’s left kidney, in the same location where the atrophy had been noted 13 months earlier. The urologist, who referred Hipsher to a surgical oncologist in Boise, told her the 2.5-centimeter tumor might be benign.

Hipsher was certain it was not. The surgical oncologist agreed and told her it was probably malignant.

A week before Christmas, the surgeon removed the portion of Hipsher’s left kidney that contained the tumor, which he characterized as unlike anything he had seen.

Because of its unusual nature, pa­thol­ogy samples were sent to the Johns Hopkins Medical Laboratory in Baltimore for analysis.

A few weeks later, in early January 2018, Archie gave Hipsher the devastating news. She had a rare — and highly aggressive — disease called sarcomatoid renal cell carcinoma.

Sarcomatoid cancer, which typically strikes men over age 60, is characterized by poorly differentiated cells resembling a sarcoma, cancer that develops in tissue such as blood vessels or in bones. The percentage of differentiation reflects the tumor’s aggressiveness: the higher the percentage, the more aggressive the tumor.

Hipsher’s tumor was 100% sarcomatoid. The average length of survival for sarcomatoid kidney cancer is about eight months.

Pathologists were unable to determine whether the cancer had originated in Hipsher’s kidney or in her bladder or ureter, the tube that carries urine from the kidney to the bladder.

Hipsher was devastated — but not surprised.

“I’d known it was cancer deep down in my bones for a while,” she said. “I’m not sure how to explain it.” One of her aunts had been diagnosed with a rare sarcoma at age 53. Another died a month after being diagnosed with colon cancer.

Archie said that doctors went back and examined Hipsher’s 2016 CT scan to see whether the tumor had been missed; he said no sign was found. “I think maybe the imaging was done at such an early stage that you can’t even see it,” he said.

Hipsher regrets she didn’t push for a second CT scan sooner.

“What I definitely wish I had done was bring in pictures or a sample of bloody urine early on,” she said. “Somehow I think doctors believe patients when there is something visible or tangible, rather than just our words.”

CT scans performed three and six months after surgery, while Hipsher was undergoing complex tests for genetic mutations that could guide future treatment, were clean. And her lab tests were normal.

Because her cancer is rare, Archie suggested that Hipsher seek a consultation at the MD Anderson Cancer Center in Houston and helped arrange a visit.

In August 2018, Hipsher and her husband, Mike, flew to Texas. She had received the standard first-line treatment — surgery — but the Houston oncologist told her that too much time had elapsed for chemotherapy or immunotherapy, sometimes used after surgery to prevent a recurrence.

“At this time we believe the risks of treatment outweigh the potential benefits,” one oncologist wrote.

MD Anderson specialists recommended that Hipsher undergo active surveillance, which includes CT scans and lab tests every three months.

Hipsher opted to continue treatment in Houston. So far, the news has been good: She remains cancer-free. Her next visit is scheduled for mid-August.

The couple live frugally and have what Hipsher characterizes as excellent health insurance. She is “stunningly grateful” to be able to afford the cost of travel and unreimbursed medical expenses, which last year totaled $21,000. “I really feel for the people for whom such a thing isn’t even an option,” she said.

Although she is still coming to terms with what has happened, Hipsher said she has largely succeeded in moving beyond the dismal statistics and feels generally optimistic.

With the help of a therapist, Hipsher said she has found “a metaphor to live by: Live life like a river trip. You pack and plan and prepare the best you can. And even though you don’t know everything that will happen downstream, you launch.”