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Cheryl Taylor Bagenstose with her children and husband as she battled CUP cancer - cancer of unknown primary origin - in April 2022. Photo: courtesy of the Bagenstose family

What is CUP cancer? Symptoms, life expectancy and the treatment situation of ‘cancer of unknown primary origin’

  • To treat cancer effectively, doctors need to know where it began; in rare cases, the source cannot be identified, like for Kyle Bagenstose’s mother
  • CUP cancer, which has no discernible origin, is much harder to target and treat correctly, making it one of the hardest for patients to survive
Wellness
USA TODAY

Cancer ruthlessly dragged down my mother this spring – less than two months from diagnosis to death.

Just six months ago, she and I danced to The Beatles at my wedding, not a care in the world. At age 72, in a time of life when many people start to slow down, she seemed to be gathering steam: active in social clubs, volunteering for local organisations, smacking the tambourine in the church band on Sundays, chasing her four grandchildren around.

She wasn’t shy about going to the doctor. She never missed her annual mammogram, and messaged our family doctor about nearly every nick she felt in her body.

In January, about four months before she passed, one of those little pains started growing into a big one. There was an ache in her chest, and it was getting worse. She was losing weight. At first, the doctors thought it was an inflammation of the cartilage around her ribs – eight weeks of healing should do the trick.

A young Cheryl Taylor Bagenstose, who died in spring 2022 from CUP cancer. Photo: courtesy of the Bagenstose family

But it wasn’t getting better. By the end of February, she was nearly bedridden in pain. One afternoon in early March, a sudden, searing sensation in her chest caused her to jolt upright, then head for accident and emergency.

There, the doctors again nearly cleared her of anything serious. As a last check, one ordered a CAT scan. That’s when they found the cancer, littered throughout her body: lungs, liver, ribs, sternum, hip.

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My education on cancer began. Normally doctors need to identify where a cancer originated, so they can select the right way to treat it. Certain cancers respond to certain chemotherapies, and others can be targeted by newer treatments like immunotherapy.

That’s when the second bombshell landed. The doctors had no idea where my mother’s cancer came from.

She steeled herself to endure a bone biopsy of her hip, then a second liver biopsy, then a blood test to try and ID what kind of cancer she had, or at least a semblance of genetic material. All came back empty. The doctor’s ultimate diagnosis: “Cancer of unknown primary origin” – or CUP cancer.

Somewhere in my mother’s body was a tumour so small it escaped detection. Or, perhaps it was destroyed by the immune system, or inadvertently clipped out during an operation for something else.

Bagenstose with her granddaughter. Photo: courtesy of the Bagenstose family

But at some point, it sloughed off cells and they metastasised all over her body. These tumours, in turn, mutated for so long, undetected until they began to fracture her bones, that they no longer had enough identifiable genetic information to determine where they originated.

The only treatment option was a “broad spectrum” chemo, a plan that involved throwing everything at the tumours. The doctors recommended breaking the dosage up over three weeks, instead of the usual one, to avoid killing her outright.

We never got that chance: my mother collapsed at home three weeks after diagnosis, a week before chemo was to begin. It was home hospice from there.

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A similar fate befalls the 2 to 3 per cent of cancer patients who are ultimately diagnosed with CUP. Because CUP is always diagnosed after the cancer has spread, prognoses are often grim, with median survival rates of two to 12 months. That puts CUP roughly equal to stage 4 pancreatic cancer for the worst possible thing you can get.

It’s hard to believe there are that many people with CUP. Nobody in my family or our social networks ever encountered it. Looking for perspective, I explained the situation to my doctor, a 77-year-old private practitioner who has heard of everything. He’d never heard of it.

In a world of online everything, there is frighteningly little on Google and Facebook about CUP cancer. Most medical information is on UK government websites, and it’s limited to everything I just explained. There are one or two support groups, with a few hundred members, and a zebra-striped awareness ribbon.

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In my despair, I reviewed the latest medical research on CUP. It only further confounded me. A new school of thought cuts against the long-standing belief that CUP is a “catchall” diagnosis for diverse cancers with a missing primary tumour. Instead, some theorise that it is a cancer all of its own, originating systemically from developing cells, like a blood cancer. In other words, the origin of cancer of unknown primary origin is unknown.

I did find one spark of hope. Last year, a group of Italian researchers led by Dr Carla Boccaccio published a study. They grafted human CUP tumours onto mice, and suspecting a certain genetic mutation is common in such tumours, gave the mice an already-approved chemotherapy drug that targets it.

In an email correspondence, Boccaccio told me that the results indicate potential 70 per cent effectiveness against CUP cancer, leading to their development of an upcoming human clinical trial in Italy.

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I rushed to get the information in front of my own mother’s doctors, desperate for anything that might work. But there were too many unknowns, and too little time.

My mother Cheryl Taylor Bagenstose passed away on April 24 at age 72, six months to the day after our mother-son dance, and seven weeks after her diagnosis. How in the world that can happen, I’ll never know.

Here’s what I do know. My mom was an incredible person. She taught art in public schools for more than three decades. She was happily married to my father for 50 years, raised three kids and loved her four grandchildren. She was more active even in her final months than I ever was or likely ever will be.

In her early 20s, my mother took a term off college to care for her own mother as she passed away from breast cancer. After ovarian cancer took my dad’s mother about a decade later, he told me they found some comfort in science: “By the time we grow old, surely they’ll have a cure for this,” they believed.
Bagenstose embraces her son Kyle during their mother-son dance at Kyle’s wedding in October 2021, about four months before her diagnosis. Photo: courtesy of the Bagenstose family

My mom never gave up on science, in fact, she donated her body to it. We’re also working on getting her biopsies to Boccaccio to aid in her research on CUP cancer.

But more importantly, my mom never gave up on us. Toward the end, knowing she was rapidly slipping away, I sat by her bedside and grasped her hand. We hadn’t had meaningful communication in days, and I didn’t expect any then. Almost as if sensing my pain, buoyed by the awesome power of a mother’s love, she swam up from the depths of wherever end-stage disease drags you and opened her eyes. They locked right onto mine.

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I told her that I was lost, but that she had already shown me the way forward. That I’d never get over the tragedy that cancer inflicts, but that she showed how to keep living. That you keep smiling, keep going, keep dancing, keep loving and growing the family that remains.

She nodded as I spoke, gripping my hand firmly, her eyes crystal clear and reassuring. We said our I love yous. Exhausted, she closed her eyes and immediately sank back down below.

Maybe by the time I’m her age, CUP will not only no longer be unknown but also unimportant, banished with the rest of cancer into the ignoble bin of has-been diseases.

But if not, my mother gave me the blueprint for how to endure, and a love that will never die. That much I know.

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