Montana Journalism Abroad

One woman’s experience with the National Health Service epitomizes what it’s like to deal with treatment and delays inside the country’s healthcare system

EAST KILBRIDE, U.K.—When Laura Eggo was breastfeeding her daughter, she found a lump. She’d had a similar one 15 years prior in the other breast and went to a nearby clinic, where she was told it was just a blocked milk duct.

It was no big deal, so she continued living her life and taking care of her 2-year-old daughter. Eggo exercised regularly, even ran a marathon once. She loved to sit and draw people in her free time. She works as a biomedical scientist and has a logical way of looking at things, so she didn’t panic when another lump showed up.

After she noticed the lump getting bigger, Eggo knew she should get it checked. Still, she put off going to the clinic for months, even though it was a simple phone call to make sure everything was OK. She’d recently moved from where she grew up in Greenock to East Kilbride, the largest town in South Lanarkshire, south of Glasgow in Scotland, where healthcare is covered by the government. Moving from one region of the National Healthcare Service to another required her to find a new general practitioner and to file paperwork. This was June of 2020, deep into COVID-19 restrictions.

When Eggo finally called, she got an appointment the same day for a quick breast screening at the doctor’s office around the corner from her home. She left less than an hour later with antibiotics for a potential infection and a referral to the breast clinic to do a mammogram, ultrasound and biopsy to make sure everything was accounted for.

After three weeks, Eggo called the breast clinic because she hadn’t heard anything. She was told the results were just taking longer than expected due to pandemic-related delays.

Four weeks after her initial appointment, she decided to go to Forth Valley in Stirling, an hour away, to get screened again for her peace of mind.

Before the testing even began, doctors could tell the mass in her left breast was cancerous. They told her it was just a matter of the size and spread, she said. The biopsy came back one week later.

When she went back to her local office in East Kilbride for the results, the doctor told Eggo she could call her husband Brian in, a rarity during this period of social-distancing.

“I knew at that point,” Brian said.

Their minds both raced as they sat in the office across from the doctor explaining their next steps. As they headed to the car, they both cried, letting out the emotions built up in that office.

Then they composed themselves before driving home. They discussed the plan and called their close relatives to break the news. But it wasn’t just a matter of delivering information.

“If Laura’s gonna die, then how do we explain that to our kid?” Brian said.

Women, and some men, have a story about the day they found out a lump in their breast is cancer. Breast cancer accounts for 1 in 4 cancer types among women globally, according to research in the Journal of the National Cancer Center. In 2022, more than 11% of cancers diagnosed worldwide were female breast cancers, according to the American Cancer Society. At least 660,000 women have died from breast cancer, making it the leading cause of death among women globally.

In the United Kingdom, Cancer Research UK found that breast cancer diagnoses in women have increased 5% from 2006 to 2018.

Researchers know that screening women and catching cancer at its earliest stages can result in successful treatment and fewer deaths. In the United States, women are encouraged to begin yearly mammograms at age 40, especially if they have a history of breast cancer in their families. 

But in the U.K., where the government-run NHS guarantees healthcare for all, women begin screening for breast cancer at age 50, with a mammogram every three years until age 70.

In addition to the age-40 start, the American Cancer Society recommends women older than 75 still get mammograms every other year. 

In East Kilbride, Laura’s time in the doctor’s office was the start of a long wait. Before treatment could start, doctors needed to know how large the tumor was.

She waited a month before receiving an MRI. She waited another month before receiving a full-body CT scan to assess if the cancer had spread.

The CT scan showed no other signs of cancer in her body. However, it picked up a second mass in the opposite breast — the one from her first blocked duct. But the clinic had no record of that visit, since she’d changed districts when she moved. That meant she’d need to get the second mass biopsied before she could start discussing next steps. 

Meanwhile, Laura’s fear began to grow each day she had to wait — imaging the worst. The tumor, something she had ignored for months, had now begun to haunt her. Now she could see it when she lifted her arms. She could feel it while she was sleeping, making her uncomfortable. 

“That was the worst bit because it was the fear that if it spreads it was fair and it just didn’t feel real. You think it’s a death sentence,” Laura said.

* * *

Cancer screening in the U.K., and Europe as a whole, has been a debated topic for years. About 12 years ago, a panel of the top breast cancer researchers reviewed the data behind two claims: that screening for breast cancer reduces the number of deaths from the disease and that screening found too many irregularities that did not necessarily need to be dealt with at the moment.

David Cameron, an oncology doctor and breast cancer treatment researcher from the University of Edinburgh, was selected for the review board. Its conclusion: Both claims were correct to some degree.

“It was pretty well accepted across Europe and in the U.K. that this analysis kind of made sense,” Cameron said. “Screening was worth doing, but you had to accept that some people had something found that actually they didn’t need to find.”

This panel, along with other independent research, was enough to confirm at the time that the range provided for NHS-covered care did not need adjustment. After all, the average age of a breast cancer diagnosis is 63 years old.

In Laura Eggo’s case though, the tumor had grown enough to become an issue at age 39.

Adding to age restrictions on when the NHS encourages screening are women’s decisions to forgo screening until, perhaps, they feel a lump. And by the time they feel a lump, and if it’s cancerous, chances are greater the cancer is in a more advanced stage.

In recent years, Scotland has recognized a growing issue in screening. Government statistics show a dramatic drop in the number of women screened along with an increase in the number of diagnosed cases. 

According to the NHS, the number of screened women in Scotland dropped from 2.12 million in 2019-2020 to 1.19 million in 2020-2021 while cancer referrals increased 15% since 2019. Even if cancer is detected early, the target time for starting care is met for only about 70% of patients, according to the NHS.

NHS Scotland reported about 45% of cancers are diagnosed at stage III and IV, with recent trend data showing a rise. Comparatively, the Center for Disease Control in the U.S. estimates only about 30% of cases are late-stage.

* * *

Laura’s cancer was stage III and she and her husband prepared for what they knew would be next. They both believed she’d have surgery, chemotherapy and radiation within six months. 

At three months in, Laura hadn’t had surgery.

Sometimes, they didn’t hear anything from the doctors for a few weeks. They would have to call the clinic to check for any updates.

“[The NHS is] underfunded, and it’s kind of on its knees,” Brian said. “The amount of wait time we had, I think, particularly in the early days, was scary.”

The NHS is a huge organization established in 1948. Later, it broke into sectors of local control. Today, there’s NHS Scotland, NHS Northern Ireland and NHS England and Wales, which all differ slightly. In Scotland, prescriptions are 100% covered, while in England and Wales citizens pay for some medicine out of pocket. U.K.-wide, the NHS employs around one in 40 people, including Laura, who works in the biomedical research lab in Glasgow.

The care provided by the NHS includes family doctors, surgery, dentistry, hospital visits and mental health services.

In the United States, universal healthcare remains foreign, but the debate around adopting it is well-covered ground. President Harry Truman introduced the idea to Congress in 1945. In the 1960s, Medicaid began as the safety net for uninsured and under-insured. Variations of universal care, including Medicare for All, have been presented to Congress 13 times, most recently and without a chance to pass by U.S. Sen. Bernie Sanders.

And while some in the U.S. aspire to a system like Scotland’s, patients facing long waits for care – cancer and otherwise – have turned to private care paid out-of-pocket because it allows patients to visit providers at private clinics which typically have shorter waiting times for the same care. 

That was an option considered by the Eggo family. Through Brian’s job at the U.K.-based Independent Monitoring Board, he can opt into private insurance covered by his employer. But the coverage doesn’t extend to any other member of his family. 

After consulting with a doctor, the couple was convinced Laura’s cancer care wasn’t pressing enough to be worth the move to private care. So they decided to stick with the public health options and wait it out. 

Laura’s tumor was estrogen-receptor positive, meaning the cancer is stimulated to grow by binding with the estrogen released before a woman’s menstrual cycle. Cutting off estrogen could slow the growth of cancer cells. This meant, though, that on top of the other treatments Laura would undergo, she would also have to take daily medication for the next 10 years to push her into menopause and stop the production of estrogen. It would also mean she and Brian would not have more children.

* * *

The date for Laura’s surgery came four months after her diagnosis, following another delay linked to her lymph nodes. They appeared swollen during a new round of scans, so doctors took a biopsy. It came back negative for cancer, which cleared the way, again, for her surgery. 

First, they had to visit a hospital in downtown Glasgow, the one where Laura currently works, so she could get a fluorescent dye injected into the tumor, which helps surgeons identify its boundaries.

They then drove another 30 minutes to a different hospital across town for Laura’s surgery.

Inside, Brian made it as far as the doors of the hospital before he had to turn around and go back to the car because of ongoing COVID regulations. 

The operation took about seven hours to complete, and it went well. 

Laura recovered quickly post-op and was back to playing with her daughter outside, reminding her that her mum was sick and had to be gentle.

A month later, doctors went back in to do a reconstruction of the breast and re-biopsied Laura’s lymph nodes when they again noticed swelling. This time, they found traces of cancer. 

After some debating, Laura opted to have all the lymph nodes in her left arm and armpit removed. Having no lymph nodes can increase the chances of inflammation and stagnant fluid, but the fear of her cancer spreading further was enough to counter the reasons against it.

A month after that, Laura started chemotherapy. 

By this point, Brian had been through enough to compose himself. He learned to be the support Laura needed in the moment. He broke up his supportive messages with jokes and tried to be there for her in any practical way, since he still could not be in the physical room with her. He cleaned the house, made snacks and stepped up on caring for their daughter.

When she finally made it into the clinic, Laura sat by herself in the waiting room thinking about the daunting journey ahead with chemotherapy and radiation, knowing the stories of other patients. The nausea. Vomiting. Hair loss. Fatigue.   

Even with all of Brian’s support, she felt alone in that waiting room. Before walking into the infusion center, she cried quietly to herself. 

The chemotherapy clinic was only a 10-minute drive from their house, so Brian decided to go home and try to get some work done. On the drive back home, he cried, too.

Laura had one infusion every other week for six sessions. She then had a few months to recover before she started radiation five days a week for four weeks.

At first, she was fine. But as the sessions progressed, Laura was tired, sick and lost her hair. Hanging out with her daughter turned into watching shows and taking naps on the couch.

When her treatment switched to radiation, it was more intense than is typical. Because of the placement of her tumor so close to her sternum, doctors couldn’t hedge against regrowth by removing the tissue surrounding the tumor. Still, she came through radiation, only to get bad news about her mother.

* * *

It had been over a year since Laura and Brian sat in the doctor’s office in East Kilbride and absorbed the news. She was back to work, exercising regularly and playing with her daughter again.

But her mom, who’d survived bowel cancer back in 2010, got a bad scan. That prompted doctors to wonder if it was genetic.

Testing revealed her mom’s cancer could be passed on to her children, leading Laura and her two brothers to find out if they’re carriers. Laura’s doctors suggested she also test for the breast cancer gene.

During her treatment, Laura was told by her oncologist she didn’t need to be tested for the breast cancer gene because she wasn’t at risk at her age. 

Although not present in all breast cancer diagnoses, genetic breast cancer is linked to an estimated 15% of cases worldwide and can show up in a variety of genes. The most well-known gene for diagnoses is the BRCA1 and BRCA2 genes.

Laura’s genetic testing came back a few weeks later. Unlike her two brothers, she was negative for the bowel cancer gene.

Her other test was positive for BRCA1. 

* * *

Laura is now in remission, but the risk of her cancer coming back is high due to having the mutated gene. 

There was only a 4% chance of her developing breast cancer before the age of 40, according to Cancer Research UK, but she got it. There is a 0.2 to 0.3% chance of developing a harmful mutation in the BRCA1 gene among women without a history of it, but she had it.

To combat the fear and ease her mind, Laura decided to have her breasts, as well as her ovaries, removed. The gene increases risk for ovarian cancer, as well, and there’s no easy screening to stay on top of it.

The current waitlist for ovary removal is six to nine months, while the waitlist for breast removal and reconstruction is over five years.

Laura opted to get in line and wait once again.

This story is part of a healthcare series produced by the International Reporting program at the University of Montana School of Journalism. Read more from this Scotland-based project, as well as reports from other countries, at Montana Journalism Abroad.