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– Maybe you're just someone with blood in your urine. The mysterious state finally gets a terrible cause



Katie Hyper has had a terrible year. stomach virus, followed by prolonged nausea and pain, which left her to live on a dull diet consisting mainly of wheat and apple mashed cream. The problems with her gut were accompanied by days of fatigue, so strong that sometimes she barely managed to rise up the stairs of Bellevue, Idaho, at home.

In October 2016, just as Hipscher was recovering, the 45-year-old sign Language interpreter and leader of the Grand Canyon suddenly face a new and worrying symptom: visible blood in her urine. Over the next 13 months she has suffered numerous tests carried out by specialists who could not determine what caused the bleeding.

] "Maybe you're just someone with blood in your urine," Hipscher remembers that the urologist says a year after the problem first appeared.

Less than a month after the October 2017 statement, Hipsher learned the cause of the bleeding. The final diagnosis will take another three months.


"It's really hard to maintain consistency," says Hipscher, whose trial is compounded by recurring digestive problems and is complicated by distance. Visiting specialists sometimes meant a five-hour trip from her home outside Boris.

But the most frustrating part, said Hipscher, who worked in a medical clinic, is trying to convince skeptical doctors that her continuing symptoms seem to show something serious. One categorically told her she was "too young" for the disease she was eventually diagnosed with.

Unexpected bleeding

In October 2016, Hipsher was about to conduct a 16-day river trip when he noticed that her urine was colored in pink.

"I thought," This is strange. I had not eaten beets, "which may cause temporary discoloration of urine, known as beeturia, recalls Hyper. She has no pain or other symptoms and she has never experienced chronic urinary tract infections that can cause visible urine blood known as gross haematuria. [00059] A urinalysis carried out the next day, after bleeding is no longer visible, confirms the presence. red blood cells and protein in the urine. Proteinuria may be caused by diabetes, high blood pressure or a family history of kidney disease, none of which is administered to Hipsher. Her primary care physician ordered a computer tomography of the abdomen and pelvis and directed her to a urologist. The radiologist also reports atrophy of the upper left kidney, which he thinks "is most likely a chronic trauma." The urologist has performed a cystoscopy, a test that tests the bladder; it was normal. The doctor offered Hipsher to drink more fluids that could help prevent a future kidney stone attack. After the bleeding was repeated, Hipsher consulted a second urologist who sent her to a kidney specialist. intermittent bleeding may be caused by IgA nephropathy, a disease that damages the kidney filters and can occur after a disease

The nephrologist recommended continuing Hipsher's kidney function that functions normally. He did not want, for reasons that Hipsher said he never articulated to perform a kidney biopsy, which can finally determine if the problem is IgA.

In May 2017, Hipsher decided that he needed a new nephrologist. Bleeding is already daily.

The second nephrologist is planning a needle biopsy next month. The test excluded IgA nephropathy and failed to find anything to explain the bleeding. Sometimes a cause can not be detected and the condition is labeled with idiopathic haematuria.

Hipsher is not reassured; her urine was sometimes bright red. He decided he needed extra-curricular expertise, so he called a prominent medical center and called for a meeting. She spent four days in a vast nephrology work in July

Documents described her as "very healthy appearance" and marked "excellent work" outside of her. The pathologist looked at the CT, done nine months earlier, but did not repeat it

The doctors came to the same conclusion. They could not find an explanation for her bleeding, nor did they reveal anything that bothered.

When Hipsher asked the nephrologist if he could exclude cancer, she remembers that he rejected it. The first kidney specialist told her she was "too young" for kidney cancer.

In the next few months, Hipsher focuses on recurring and difficult to treat stomach problems that are due to bacterial overgrowth of the small intestine, a condition that can cause nausea, diarrhea and fatigue, and later a parasitic infection. The first doctor she'd seen told Hipsher that she was confused and sent it to Thomas Archie, a family medicine specialist.

"She was referred to me because her case is confusing and I do a lot of 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 ask CT for worsening bleeding, which included what appeared to be blood clots. The doctor, she said, stepped back.

"I will not radiate you again," she remembers, saying that we will not worry about the blood.

When Hipscher went on, the urologist agreed to consult with a Boise colleague to check if CT scan was desirable

Two weeks later, the urologist instructed the scan to check for unusual tangles of blood vessels known such as arteriovenous malformation, which can sometimes cause bleeding. 19659033] The visualization test revealed something quite different: a grape-size mass on Hipsher's left kidney, at the same spot where atrophy was spotted 13 months ago. The urologist who directed Hipscher to a surgical oncologist at Boise said the 2.5 centimeter tumor could be benign.

Hiper is sure it is not.

One week before Christmas, the surgeon removed the part of Hipsher's left kidney, which contains a tumor he characterizes as something he has not seen.

Unusual nature, pathology samples were sent to the Johns Hopkins Medical Center in Baltimore for analysis. She had a rare and very aggressive disease called sarcomatoid renal cell carcinoma.

Sarcomatoid cancer, which usually hits men over 60, is characterized by poorly differentiated cells resembling sarcoma, a cancer that develops into tissues such as blood vessels or bones. The percentage of differentiation reflects the aggressiveness of the tumor: the higher the percentage, the more aggressive the Hipsher tumor. The average survival time of sarcomatoid kidney cancer is about eight months.

Pathologists could not determine whether the cancer occurred in the kidneys of Hipsher or in the bladder or ureter, the tube that carries urine from the kidney to the bladder. (Blood in urine and fatigue are common symptoms of kidney cancer.)

Hipsher was devastated – but not surprised.

"I knew it was cancer deep in my bones for a while," she said. "I'm not sure how to explain it." One of her aunts was diagnosed with a rare sarcoma at the age of 53. Another died a month after being diagnosed with colon cancer. Over the past two years, doctors told her she could not determine the cause of her double-digit weight loss and severe abdominal pain. is omitted; he said no sign was found. "I think maybe the image is done so early that you can not even see it"

If Hipsher has gone through computed tomography six months after the bleeding has started, Archie said, the tumor

Hipsher regrets , that she had not insisted on a second computer tomography earlier.

"What I definitely wanted to do was bring early photos or a bloody urine sample," she said. "Somehow I think doctors believe patients when there is something visible or tangible, not just our words."

The journey to healing

The Hopkins pathological report contained some good news: the tumor was small and looked small to the left kidney. Most sarcomatoid tumors are much larger and metastasized extensively when they are found. PET Scanning Does Not Show Signs of Disease

The CT scan was performed three and six months after the surgery, while Hipsher underwent complex tests for genetic mutations that could make the future treatment clean. Her lab tests were normal.

Because her cancer is rare, Archie suggested that Hipster seek medical advice at the MD Anderson Cancer Center in Houston and helped organize a visit.

In August 2018, Hipsher and her husband flew to Texas. She received the standard first line treatment – surgery – but the Houston oncologist told her that it took too much time for chemotherapy or immunotherapy that is sometimes used after surgery to prevent recurrence.

"At that time we believe that the risks of

MD Anderson experts recommend that Hipsher be actively monitored, which includes CT and laboratory tests every three months.

If her cancer recurs, doctors say they expect her to be treated with immunotherapeutic drugs that have promised to treat sarcomatoid tumors

Hipsher has chosen to receive treatment in Houston. So far, the news is good: it remains without cancer. Her next visit is scheduled for mid-August.

The couple lives modestly and has what Happher describes as an excellent health insurance. She is "incredibly grateful" that she can afford travel and non-reimbursed medical expenses, which last year amounted to $ 21,000. "I really feel that people for whom such a thing is not even an option," she says. and feels overall optimistic. "It's harder to see what this is for my husband," she said, adding that it was her rock.

With the help of a therapist, Hipsher said she found a "metaphor for life: like a river trip, packing and planning and preparing the best you can, and though you do not know everything that will happen down the chain, you are starting. "

Submit your determined medical mystery to sandra.boodman@washpost.com There are no unresolved cases please Read the previous mysteries of wapo.st/medicalmysteries


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