Schmalfeldt: Cancer survivorship - it's a topic that you really don't hear a whole lot about, and that's interesting in itself because more and more people are surviving cancer. It's not a death sentence any more, in many cases, it's a life sentence. You might be surprised to know that here at the National Institutes of Health we actually have an Office of Cancer Survivorship. And here with us right now on NIH Research Radio is the Director of the Office of Cancer Survivorship at the National Cancer Institute, Dr, Julia Rowland. Thank you for joining us today.

Rowland: Bill, it's lovely to be here today and I really welcome the opportunity.

Schmalfeldt: Tell us a little, if you will, about the mission at the Office of Cancer Survivorship.

Rowland: Well, the ultimate goal at the office is really to enhance the length and quality of life of all those who carry a diagnosis of cancer.

Schmalfeldt: I know that when you hear about people who have survived some horrible event, you hear about the "guilt of survivorship." Does that enter into cancer survivorship at all?

Rowland: That's certainly an issue for many individuals who carry this history - "why me? Why did I do well? Why did I recover from this when there are so many like me who have succumbed to this disease?" So certainly there is an issue of that. And along with it, of course, there's the fear that many survivors tell us that they live with from day to day, and that's the fear that the disease will come back.

Schmalfeldt: Do you ever get over that?

Rowland: That's a really good question. In general, people will tell you it never really goes away. But people will find they can park it somewhere and get on with their lives and live rich, full, rewarding existences. For some, though, it's a real hurdle with daily reminders - and certainly we've seen a lot of stories in the press recently about public figures talking about their illness coming back. And when those events occur they raise a lot of anxiety in people who are survivors themselves.

Schmalfeldt: How did the National Cancer Institute come about this decision to start the Office of Cancer Survivorship?

Rowland: Well, the office was actually established back in 1996 in direct response to compelling and articulate response out of the advocacy community saying "it's wonderful you have all these advances, the earlier detection, the better treatments, more supportive care, and that people are living long term with this illness, but what we don't know is to what you are returning individuals, what are the kinds of problems that individuals face after treatment, and what are you doing about that?" Essentially, it was a challenge back to the NCI to say "congratulations on your success, but you need to be cognizant that cancer cures and care come with a cost."

Schmalfeldt: And what got you interested in this particular field?

Rowland: Well, I actually stumbled into this area in some ways in my graduate career. I was doing research in developmental psychology, so I was very interested in illnesses that occur across the life course, when in the time of an individual's life do they become ill. and one of my professors referred me to a physician who at that time was doing research up in the Bronx, looking at women who were breast cancer survivors and talking to them about their quality of life. And I was instantly hooked. I thought this was as fascinating area with lots of work to be done.

Schmalfeldt: What is on the horizon in the area of cancer survivorship? What research are you guys doing? What exciting things are we going to be hearing about in the future?

Rowland: I think some of the exciting things we're looking at, partly it goes back to the mission of the office, which is "tell us a little bit more about what happens to individuals post treatment". So, what has happened in the past 10 years since the office was created is that the medical community now recognizes that cancer survivorship - that post treatment period is an area of unique issues in and of itself. And that's very exciting because it has placed this solidly in the area of what we sometimes refer to as the "cancer control continuum." It has its own unique issues and there are researchers and clinicians who are addressing specifically that particular piece of recovery and wellness. What's been very exciting as we listen to the voice of survivors is recognizing we need to attend to their health behaviors after cancer. Interestingly, some relatively simple things - recommendations to stay physically active after your cancer diagnosis - may have important impact on disease recurrence and possibly long-term survival. So those kind of findings are very provocative, very exciting, because this is something everybody could do.

Schmalfeldt: Now this goes beyond the cancer patient him or herself. This is everyone who knows and loves the cancer patient.

Rowland: Absolutely. Back in 1986 a group of about 24 individuals gathered and created what is now known as the National Coalition for Cancer Survivorship. And when they did that at the time and looked at how a survivor was labeled, essentially, in that early period, the medical definition for "survivor" was someone who remained five years disease free. And in their wisdom, they said this is no longer acceptable, because you can't not be thinking about the quality of life issues for five years. You can't decide five years later, "Gee, I would have liked to have had kids."

Schmalfeldt: You're thinking about those every day.

Rowland: Absolutely. And they need to be part of the decision making in your care. And when they decided they needed to change that definition, it was the coalition that gave us the language that we use for survivors now, that anybody who is diagnosed with cancer may refer to him or herself as a cancer survivor from the moment of diagnosis.

Schmalfeldt: From day one.

Rowland: From day one through the balance of their lives, whether they want to call themselves a survivor or not, but they're entitled to that. And there were two important messages they wanted to convey. Hope. You have a life, you have the opportunity to think about a life after cancer. As you said, we're turning these more and more into curable diseases, or more often, chronic illnesses that you can live long term with. Included under that larger umbrella were family members and caregivers because they recognize that they are part of this journey - often, an integral part of it.

Schmalfeldt: Well, I know that as a person with a chronic condition myself, and the listeners to this podcast know that I have Parkinson's Disease and have been going through some clinical trial surgery for that, if you're not careful, you tend to think of everything that happens in your life in terms of the disease. How do you convey to a cancer survivor that there's more to you than just the fact that you had cancer?

Rowland: That's a really important point, Bill, and you know as you talk about your own experience with Parkinson's Disease, cancer survivors will tell you that after this diagnosis and treatment a headache is no longer a headache - it's a metastatic brain tumor. This is what you worry about, and it's part of the territory. We talked earlier about fear of recurrence. It's trying to find some place to park that worry but get on with your life. And that's one of the challenges that individuals must deal with and find some comfortable resolution around if they're going to move forward.

Schmalfeldt: We hear so much about the fight to research the causes of cancer, the research for new treatments, preventions, We don't really hear enough, I think, about what to do when you've had cancer and what to do afterwards. And that's why I think this is a very valuable discussion we're having today. What are some of the web resources available - your own web site, for instance?

Rowland: Absolutely. The URL is www.survivorship.cancer.gov. You can come and find out what kind of research we're supporting with public dollars here in the United States, very cutting edge research here. We also have on that site links to major reports that have come out. There have been in the last five years five major reports addressing the issue of cancer survivorship. So this is an issue that has really garnered public attention. People are excited about it. And these major reports we're hoping are not only going to stimulate more attention to, more funding for this kind of research and answers to those very questions you've posed.

Schmalfeldt: Anything else you want to add before we wrap it up?

Rowland: Well, we were talking earlier about language. Many people don't like to label themselves as a survivor.

Schmalfeldt: Some people don't even like to say the word "cancer" as if saying the word will get the tumor to start growing again.

Rowland: Absolutely. And I think that when the coalition adopted that language it was not their intent to "label" people, but rather to change the culture of care, to take away the stigma of having the disease, but also to say there's a lot of hope here and to say that people can live very satisfying and productive lives after cancer. An important take home message here is that after you've had a cancer diagnosis, it is important to ask what you can be doing to promote and maintain your health after these treatments.

Schmalfeldt: A patient is his or her own best advocate in this case.

Rowland: Absolutely! And needs to be actively engaged in it, knowledgeable about it, asking those questions about it, "What can I do, what do I need to know, how do I promote and ensure my health going forward?"

Schmalfeldt: A lot of reason to be optimistic, it sounds like.

Rowland: Absolutely. 10-point-8 million survivors in the United States alone today, a very promising figure.

Schmalfeldt: Well thank you for being with us and sharing some of that optimism with us today. Dr. Julia Rowland, Director of the Office of Cancer Survivorship at the National Cancer Institute, thanks for spending a few minutes with us on NIH Research Radio.

Rowland: My pleasure, Bill.