A man and woman at a breast cancer consultation with a doctor.

Today, more than 90% of women diagnosed with early-stage breast cancer will survive the disease for 5 years or more.

That’s thanks to research. And to the people who take part.

Between 1993 and 2015, more than half a million women in England were diagnosed with early-stage breast cancer. Not only did they face something life-changing, they also helped change things for the better.

Here’s how. Patients can choose to share their NHS health data, which researchers can apply to use to track trends over time. 512,447 women contributed their information to a groundbreaking study we funded into breast cancer mortality in England since the early 1990s.

This is what they showed us: women in England diagnosed with early breast cancer today are 66% less likely to die from the disease within the first 5 years than they were 20 years ago.

“The prognosis for patients with breast cancer has improved,” says oncologist and senior author Dr David Dodwell, from the University of Oxford’s Department of Population Health. “And that improvement is dramatic.”

Let’s put it another way. In the late 1990s, the average 5-year risk of dying from breast cancer after being diagnosed with the disease in its early stages was 1 in 7. Now it’s 1 in 20.

“Our general feeling that things are getting better has been confirmed,” continues Dodwell. “And not only that: we can probably be more optimistic than we had dared to hope.”

We can use that optimism now as much as ever. There’s still much more to do.

Connecting doctors and patients

This is the first study of its size to follow up patients for an extended period, and to map out how detailed characteristics of specific patients and their cancers relate to different outcomes. That means it does much more than tell us about the past.

“Our study can be used to estimate risk for individual women in the clinic today,” explains Professor Carolyn Taylor, lead author of the study.

“It gives doctors the data they need to make predictions, or prognoses, for women diagnosed with early breast cancer. These prognoses can help women understand their situation and plan their futures.”

The power of prognosis

Doctors told Mairead Mackenzie she had breast cancer in 2002. Hilary Stobart received the same news in 2009.

They’re just two of the women who contributed their data to the study. In the years since, they’ve become passionate patient advocates and leading members of the charity Independent Cancer Patients’ Voice. They didn’t just feature in this research: they helped shape it, making sure the researchers focused on the questions that matter most to people with breast cancer.

At the time of their diagnoses, though, neither knew how to react.

“Whenever you get a cancer diagnosis, it’s a terrifying moment in your life,” says Mairead. “Initially, everybody thinks they’re going to die next week, but studies like this one can give reassurance to patients about their life ahead. And now, women with breast cancer have a much better chance of surviving.”

Being diagnosed with breast cancer

Hilary didn’t have data like this to reassure her. She remembers the “dark night of the soul” she went through after her radiologist told her that it was very likely she had cancer.

Hilary was diagnosed with breast cancer in 2009.

“That was the appointment where my world fell in.

“Ended up sobbing in the car park – my husband wasn’t there – ringing my husband.

“I spent the next week or so waiting for the results to come back and worrying about whether I’d have to have chemotherapy or not. But, in actual fact, I was never going to have it.

“I would have wanted to know the facts earlier. I just think we need more information.”

That’s exactly what this study provides. It can help guide women diagnosed with breast cancer through the darkness Hilary remembers so well.

“When I was diagnosed 20 years ago, I was not given a prognosis other than the fact that this is serious and we need to treat you quickly,” adds Mairead. “But I think good, clear communication about prognosis can make a vast difference to a patient’s quality of life and how they can cope with things.”

Understanding breast cancer

It can help doctors do their jobs, too. “In the long term, perhaps the most important thing is that this is much better, more precise new information for clinicians,” says Dodwell. “They can use it to reflect on the discussions that they have with patients.”

Hilary and Mairead agree. They both stress that doctors need to help patients understand that breast cancer is “not all one thing”.

“People diagnosed with breast cancer may already know somebody who has died from it,” explains Hilary. “They could assume that they’re in the same position, but their risk of dying from it within 5 years might be less than 1%.”

That’s because some breast cancers are easier to treat with new targeted drugs. The size of tumours, and whether they have spread into the lymph nodes, can make a big difference to someone’s prognosis, too. And screening helps find breast cancers at very early stages, making it more likely that treatment will be successful.

For example, a patient in her 50s with a small, low-grade, hormone receptor positive breast cancer which hasn’t spread to the lymph nodes can be strongly reassured by the results of the study. They show that she has an excellent prognosis.

In fact, 95% of people diagnosed with early-stage breast cancer today will survive the disease for at least 5 years. Overall survival is slightly lower because some people in the study died of other causes within that time.

How research has improved breast cancer survival

  • By uncovering more about the different types of breast cancer, we’ve worked out more effective ways of treating it with targeted drugs, like trastuzumab (Herceptin).
  • We’ve also contributed to the development of a host of other new treatments for early breast cancer, including novel hormonal therapies and chemotherapy drugs.
  • Trials such like START A, START B, IMPORT LOW, IMPORT HIGH and PRIMETIME have helped improve how doctors use radiotherapy. We’re still finding ways to give shorter, more effective treatment for breast cancer patients.
  • The increased emphasis on detecting breast cancer early and screening people at risk of it have helped make sure more cases can be diagnosed when treatment is most likely to be effective. Today, people are also more aware of the signs and symptoms of breast cancer.

Learning over the long term

But the experience of having cancer can’t be reduced to a 5-year prognosis.

With most people surviving early-stage breast cancer for much longer than 5 years, it’s important to think beyond the length of typical clinical trials.

“You don’t have much grasp of having cancer until you’ve had it,” explains Hilary. “You suddenly join a club that you don’t want to be part of, and you find you have an awful lot in common with the other people in the club. You have a different perspective on what’s important.”

Hilary and Mairead brought that perspective to the study.

“I didn’t think what would happen to me in the long term was at all important beforehand,” Hilary continues. “I just wanted to know whether I was going to get treated and be okay and here next year. But 10 to 15 years on, it does matter to me.”

“The truth is, in clinical trials, it’s almost impossible to get data beyond 10 years,” explains Dodwell. “With this kind of work, it’s easier. What happened to patients diagnosed 20 years ago isn’t what will be happening now, but these messages are enormously informative. And they might be the only way for us to realistically understand the long-term outcomes after breast cancer.”

The past and future of breast cancer research

Mairead is now a Trustee of ICPV.

That’s not the only area where we need to keep up the pressure on breast cancer. Most people diagnosed recently have a risk of dying from breast cancer within 5 years of 3% or less, but there are still groups of women who face much higher risks.

Taylor and Dodwell’s study can be used to identify these women and give them the best available treatments as quickly as possible. It can also help focus future research on their specific needs.

We’re here to keep driving that research. And we don’t do it alone. We’re beating breast cancer because of the hard work and generosity of people like Hilary and Mairead.

“I’m yet to meet a cancer patient who isn’t happy for their data to be used for this sort of purpose,” says Mairead. “If there’s a chance of doing something that might make it easier for those coming after, breast cancer patients, like all cancer patients, say yes.”

“And,” adds Hilary, “if they hadn’t said yes, we wouldn’t be where we are now.”

The people who make this possible

“We know our treatment now is good because of all the work that was done earlier,” Hilary continues. “That was the first thing that got me into patient advocacy.

“I used to work as a hospital physicist, dealing with people with breast cancer. So I knew what it was like in the late 1970s. That was my first thought when I was diagnosed, but I quickly saw how things had changed.

“I mean, I didn’t have to have chemotherapy. If it was 10 years earlier, I probably would have been given it.

“Then I began to realise why. It was due to all the trials, and the thousands of women who were prepared to go into them.”

Those women have left an incredible legacy. These results make that clear.

Now we can see the improvements decades of research have made possible, and we understand how we can keep making them in the years to come.

“It’s good news,” concludes Hilary. “It shows what we’ve done, and that we need to go on doing it. More studies like this one will be needed in the future. Breast cancer is still with us. There’s a lot more work ahead.”


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