Maybe you’re just someone with blood in their urine’

A lady spent months battling a vicious stomach virus, followed by lingering nausea and pain that left her subsisting on a bland diet consisting largely of Cream of Wheat and applesauce. Her gut problems were accompanied by days of fatigue so extreme that at times she could barely drag herself up the stairs of her  home.

In October 2016, just as she was recovering, the 45-year-old sign-language interpreter and Grand Canyon river guide suddenly confronted a new and alarming symptom: visible blood in her urine.

For the next 13 months she underwent numerous tests conducted by specialists who were unable to determine what was causing the bleeding.

“Maybe you’re just someone with blood in their urine,” she remembers a urologist saying a year after the problem first appeared.

Less than a month after that October 2017 pronouncement, she learned the reason for the bleeding. A final diagnosis would take nearly three more months.

"It was really difficult to keep persevering,"she  said, whose ordeal was complicated by recurrent digestive problems and compounded by distance. Seeing specialists sometimes meant a five-hour round-trip drive from her home.

But the most frustrating part, she said who has worked in a medical clinic, was trying to convince skeptical doctors that her continuing symptoms seemed to indicate something serious. One flatly told her she was “too young” for the disease with which she was ultimately diagnosed.

Unexplained bleeding

In October 2016, she 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 known as beeturia, she  recalled. She had no pain or other symptoms and had never experienced chronic urinary tract infections, which can cause visible blood in the urine known as  gross hematuria.

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 caused by diabetes, high blood pressure or a family history of kidney disease, none of which applied to her. 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 she drink more fluids, which could help stave off a future kidney stone attack.

After the bleeding recurred, she 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 and can occur after an illness.

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, she decided she needed a new nephrologist. By now the bleeding was a daily occurrence.

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.

She 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.

Records describe her as “very healthy-appearing” and noted her “excellent outside” work-up. A pathologist reviewed the CT scan performed nine months earlier, but did not repeat it.

Doctors came to the same conclusion. They couldn’t find an explanation for her bleeding, nor did they uncover anything of concern.

When she 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.

'We're not going to worry'

For the next few months, she 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 her she was stumped and sent her to a family medicine specialist.

“She was referred to me because her case was confusing, and I do a lot of weird cases,” said Archie, whose practice combines conventional Western medicine and alternative practices, including the use of Chinese herbs and acupuncture.

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, adding “we’re not going to worry about” the blood.

When she persisted, the urologist agreed to consult a colleague to see if 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 sometime cause bleeding.

The imaging test revealed something quite different: a grape-sized mass on her left kidney, in the same location where the atrophy had been noted 13 months earlier. The urologist, who referred her to a surgical oncologist , told her the 2.5 centimeter tumor might be benign.

She 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  for analysis.

A few weeks later, in early January 2018, the  Dr. gave her the devastating news. She had a rare — and highly aggressive — disease called sarcomatoidrenal cell carcinoma.

Sarcomatoid cancer, which typically strikes men over 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.

Her tumor was 100 percent 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 her kidney or in her bladder or ureter, the tube that carries urine from the kidney to the bladder. (Blood in the urine and fatigue are  common symptoms of kidney cancer.)

She 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. For the preceding two years, doctors had told her they couldn’t determine the reason for her double-digit weight loss and severe abdominal pain.

Archie said that doctors went back and examined her 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.

Had she undergone a CT scan six months or so after the bleeding started, Archie said, the tumor might have been visible.

She 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.”

Traveling for treatment

The pa­thol­ogy report from Hopkins did contain some good news: the tumor was small and appeared to be confined to her left kidney. Most sarcomatoid tumors are much larger and have metastasized widely when they are discovered. A PET scan showed no sign of disease.

CT scans performed three and six months after surgery, while she 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 she seek a consultation at the MD Anderson Cancer Center in Houston and helped arrange a visit.

In August 2018,she and her husband 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.

A specialists recommended that she undergo active surveillance, which includes CT scans and lab tests every three months.

If her cancer recurs, doctors say they expect she would be treated with immunotherapy drugs that have shown promise in treating sarcomatoid tumors.

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She opted to receive 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 she 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, she said she has largely succeeded in moving beyond the dismal statistics and feels generally optimistic. “It’s been hardest to watch what this has meant for my husband,” she said, adding that he has been her rock.

With the help of a therapist, she 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.”