European Breast Cancer Conference, Vienna, March 2012

Cancer survivorship: NCI research and insights

Dr Julia Rowland – Office of Cancer Survivorship, NCI, USA

So the talk that I was asked to present here was addressing the whole new arena of cancer survivorship, this is what we consider what happens to individuals after their definitive cancer therapy, the months and years that take place for most individuals now. And it’s an evolving field, I wouldn’t say it’s a new field, we’re probably in our adolescence if you will, but looking at the long-term and late consequences of carrying a history of cancer.

One of the things that we looked at and what I discussed in my presentation was a little bit about the history of the survivorship movement, if you will, in the United States in particular. Many of us think that the movement really took root in the United States back in the late 1980s when a group of individuals got together, survivors themselves, their advocates, and created an organisation called the National Coalition for Cancer Survivorship. At that time they changed the definition of what it meant to be a survivor; up until then to be called a cancer survivor you had to remain disease free for five years and this group said that that didn’t make a lot of sense now that most people could expect to be alive five years after a diagnosis, we had to be thinking about their issues with regards to what life would be like after cancer, starting at the day of diagnosis. So they changed that definition, it took root in the United States, and we’re seeing that now evolve in Europe, so an attention to that. And that advocacy then led to the creation at the National Cancer Institute in the United States of the office in which I serve now, the Office of Cancer Survivorship, whose mission is really not just to improve the length of survival for individuals but importantly the quality of that life, in particular to support research looking at the long-term or persistent effects of having had or been treated for cancer and the late occurring consequences of that and research that would not only describe those phenomena but intervene and show us ways to improve quality of life outcomes for all individuals diagnosed.

Can you give examples of such research?

Well we know for breast cancer survivors in particular, who are probably the most widely studied group of survivors, in part because it’s a very prevalent disease, they are the largest constituent group within the population of all cancer survivors, and we know that they’re going to live years after a diagnosis. So what we have heard from survivors themselves and the research that we fund is there are multiple problems that women may encounter after a breast cancer diagnosis. So they may have persistent complaints of fatigue or pain, depressive symptoms, sexual dysfunction, family issues, body image problems that we need to be thinking about as we care for this growing population. Late occurring kinds of effects that we’ve seen in these research studies: cardiovascular problems, lymphedema and, of course, what we worry most about are recurrent or second malignancies.

How are the findings implemented practically?

Well it’s very important to have the research for starters, to say what’s the prevalence of the problems for individuals following treatment? The good news in part of this is what you learn very quickly from this research is that women are remarkably resilient, that despite very serious diagnoses, very intensive therapies, many women do very, very well. That said, it’s important to remember that a subset of women will encounter difficulties that persist and once we know, and this research is helping us define who is at risk for developing those, we can then develop interventions to reduce that risk, in other words keep women from being exposed to those kinds of therapies if we can, or to mitigate the impact of those if these treatments must be received. So we now have some good interventions for psychosocial adaptation, if we know to ask women are they struggling with this we can refer them for counselling. We’re beginning to look at lifestyle and behaviour after breast cancer and particularly realising that remaining physically active may be very important for women who are diagnosed and treated for breast cancer, not just for quality of life but possibly for length of survival.

We know that some women will be at risk for, as I said, some of these cardiac events so we want to be sure that they’re being followed well, that they are taking good care of the rest of their lifestyle and behaviour so that they don’t increase the kinds of morbidity that you might have with cancer if we know that they’ve had these risk factors coming along.

So we need to inform clinicians?

One of the reasons for having such sessions at these kinds of conferences is you hope that a lot of clinicians will be in attendance and who are listening to this message and realising that it’s not enough to look just for a cure for cancer but what the cost of that cure is. And I think what we have now seen is a population of care providers, healthcare teams, who are beginning to be sensitised to the fact that it’s not over when it’s over, that they need to be informing women and patients as they make these transitions to recovery about what the care is going to look like afterwards, what kinds of problems they may encounter and how to address those, what are the resources available to take care of these kinds of issues as they look towards the future.

I think one of the very important lessons we’ve also learned from this is that it’s critical for us to listen to survivors. It’s really women themselves and, as I said, this research has encompassed a lot of work with breast cancer survivors. It’s women who have been willing to share their experience about what’s happened to them that’s allowed us to realise that we have to be attending to the quality of individuals’ lives after treatment, not simply enabling them to get through the therapy but rather to say, what’s that going to be like, how can we ensure that that’s going to be the best possible life for a woman after this disease is over? Because we know most women who are treated today will become long-term survivors, so listening to that voice is critical.