Kathy Hipsher had a terrible year of gastric virus, followed by persistent nausea and pain, which made her dependent on a mild diet consisting largely of wheat cream and applesauce. Her abdominal pain was accompanied by such extreme fatigue that at times she could hardly go up the stairs of her home in Bellevue, Idaho.
In October 2016, Hipsher was recovering from the 45-year mark-speaking interpreter and Grand Canyon River Guide suddenly encountered a new and alarming symptom: visible blood in the urine.
Over the next 13 months, she underwent numerous tests performed by specialists who were unable to determine what caused the bleeding.  "Maybe you're just someone with blood in the urine," Hipsher recalls of a urologist who said one year after the first appearance of the problem.
Less than a month after this October 2017 announcement, Hipsher learned the reason for the bleeding. A final diagnosis would take almost three months.
"It was really difficult to hold on," said Hipsher, whose testing was hampered by recurring digestive problems and aggravated by the distance. Visiting specialists sometimes meant a five-hour return trip from their home outside Ketchum to Boise.
But the most frustrating part, said Hipsher, who has worked in a medical clinic, was trying to convince skeptical doctors that their persistent symptoms seemed to point to something serious. She was flatly told she was "too young" for the disease she was diagnosed with.
In October 2016, Hipsher prepared for a 16-day river trip when she noticed that her urine was tinged with pink.
"I thought that's weird. I had not eaten beets, "Hipsher recalled, which could lead to a temporary staining of the urine known as beeturia. She had no pain or other symptoms and had never experienced chronic urinary tract infections that could lead to visible urinary hematuria.
A urine analysis performed the following day, after the bleeding was no longer visible, confirmed the presence of red blood cells and protein in their urine. Proteinuria can be caused by diabetes, high blood pressure or familial kidney disease, none of which applies to Hipsher. Her family doctor ordered a CT scan of her stomach and pelvis and referred her to a urologist.
The CT scan revealed that two tiny, non-obstructive kidney stones were not present at any problematic site. The radiologist also noted an atrophy of the upper part of her left kidney, which he said was "most likely a chronic injury." The urologist performed a cystoscopy, a test that inspected the bladder. it was normal. The doctor suggested that Hipsher drink more fluid, which could help ward off a future kidney stone attack.
After the bleeding recurred, Hipsher consulted a second urologist, who sent her to a kidney doctor.
The nephrologist suggested that the intermittent bleeding may be caused by IgA nephropathy, a disease that damages the filters in the kidneys and may occur after illness.
The nephrologist advised further surveillance of the normally functioning Hipsher kidneys. He hesitated, for reasons he had never articulated, according to Hipsher, to do a renal biopsy that could definitely determine if IgA nephropathy was the problem.
In May 2017, Hipsher decided she needed a new nephrologist. Meanwhile, the bleeding was a daily occurrence.
The second nephrologist planned a needle biopsy for the following month. The test excluded IgA nephropathy and found nothing that could explain the bleeding. Sometimes no cause can be found and the condition is called idiopathic hematuria.
Hipsher was not reassured; her urine was sometimes bright red. She decided that she needed non-governmental expertise, so she called a prominent medical center and made an appointment. In July she spent four days with a comprehensive nephrological work-up.
Records describe her as "very healthy-looking" and noted her "outstanding outer" work-up. A pathologist reviewed the nine-month CT scan, but did not repeat it.
The doctors came to the same conclusion. They could find no explanation for their bleeding and did not discover anything alarming.
When Hipsher asked the nephrologist if he could rule out cancer, she remembered wiping it aside. The first kidney doctor told her she was "too young" for kidney cancer.
"We will not be worried"
Over the next few months, Hipsher focused on her recurring and difficult-to-treat stomach problems. attributed to the overgrowth of small intestinal bacteria, a condition that can cause nausea, diarrhea and fatigue and later parasitic infection. The family doctor she visited told Hipsher she was at a loss, and sent her to Thomas Archie, a family medicine specialist.
"She was referred to me because her case was confusing and I do many strange 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 of the bleeding, including the apparent blood clots. The doctor, she said, was afraid.
"I would not radiate you again," she recalls, adding, "We are not worried about the blood."
When Hipsher persisted, the urologist agreed to consult a colleague in Boise to find out if a CT scan is advisable.
Two weeks later, the urologist ordered the scan to look for abnormal blood vessel involvement known as arteriovenous malformation, which sometimes causes bleeding.  The imaging test revealed something quite different: a grape-sized mass on Hipsher's left kidney at the same site where the atrophy had been detected 13 months earlier. The urologist, who referred Hipsher to a surgical oncologist in Boise, told her that the 2.5 centimeter tumor might be benign.
Hipsher was sure that was not the case. The surgical oncologist agreed and told her it was probably malignant.
One week before Christmas, the surgeon removed the part of Hipsher's left kidney that contained the tumor, which he characterized as anything other than what he had seen.
Unusually, pathology specimens were sent for analysis to the Johns Hopkins Medical Laboratory in Baltimore.
A few weeks later, in early January 2018, Archie Hipsher gave the devastating news. She had a rare and very aggressive disease called sarcomatoid renal cell carcinoma.
Sarcomatoid carcinoma, which typically affects men over the age of 60, is characterized by poorly differentiated cells that resemble a sarcoma, a cancer that develops in tissues such as blood vessels or tissues in bone. The percentage of differentiation reflects the aggressiveness of the tumor: the higher the percentage, the more aggressive the tumor.
The Hipsher tumor was 100% sarcomatoid. The average survival time for sarcomatoid kidney cancer is about eight months.
Pathologists were unable to determine if the cancer had developed in the Hipsher kidney or in their 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.)
Hipsher was devastated – but not surprised.
"I knew it was cancer deep in my bones," she said. "I'm not sure how to explain it." One of her aunts diagnosed a rare sarcoma at the age of 53. Another aunt was diagnosed with colon cancer and died a month later. Over the past two years, doctors had told her that they could not pinpoint the cause of her double-digit weight loss and severe abdominal pain.
Archie said that doctors had re-examined Hipsher's CT scan from 2016 to determine if the tumor was present; He said no sign was found. "I think the imaging was done at such an early stage that you can not even see it," he said.
Had Hipsher completed a CT scan about six months after the onset of bleeding, Archie said the tumor might have been visible.
Hipsher regrets that she did not push for a second CT scan earlier.
"I definitely wish I had brought pictures or a sample of bloody urine early," she said. "Somehow I believe that doctors believe patients when something is visible or tangible, and not just our words."
Travel to Treatment
The Hopkins pathology report contained some good news: The tumor was small and appeared to be small on its left kidney. Most sarcomatoid tumors are much larger and have metastasized strongly upon their discovery. A PET scan showed no signs of disease.
CT scans were performed three and six months after surgery, while Hipsher performed complex genetic mutation tests that could guide future treatment. They were clean. And her lab tests were normal.
Given her rare cancer, 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 standard initial treatment – an operation – but the Houston oncologist told her that too much time had passed for chemotherapy or immunotherapy, which was sometimes used after surgery to prevent recurrence.
The treatment outweighs the potential benefit, "wrote an oncologist.
When her cancer recurs, doctors say she would expect to be treated with immunotherapeutics that are promising in the treatment of sarcomatoid tumors.
Hipsher opted for treatment in Houston. So far, the news was good: she remains cancer-free. Her next visit is scheduled for mid-August.
The couple lives thrifty and has excellent health insurance, as Hipsher characterizes. She is "amazingly grateful" that she was able to afford the travel and unrequested medical expenses, which amounted to $ 21,000 last year. "I really feel for people who do not even consider such a thing," she said.
Although she still deals with what happened, Hipsher said that for the most part she has managed to overcome the grim statistics and generally feels optimistic. "It was hardest to see what that meant to my husband," she said, adding that he was her rock.
With the help of a therapist, Hipsher said she "found a metaphor to live by: live life like a river cruise. You pack and plan and prepare the best that you can. And although you do not know everything that will happen downstream, start.
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