June 26, 2013

Dr. Evette Ludman reflects on her career, her diagnosis, and the GHRI endowment

One year after GHRI Research Associate Evette Ludman, PhD, coached nurse navigators to help cancer patients with difficult treatment decisions, she discovered the work’s value in a very personal way. Dr. Ludman recently shared her story with GHRI colleagues in this address, excerpted here.

In January 2012, I got my official notice that I had worked at Group Health for 20 years. So I got invited to a special dinner downtown, though I had to buy my own drinks. I was asked for a picture of myself and a quote about working here. I wrote: “I bleed teal for Group Health.” And wouldn’t you know, they actually showed that quote at the dinner and people chuckled. But I really feel that way.

One of my favorite research projects has been the oncology nurse navigator trial that Dr. Ed Wagner leads. It’s a wonderful study where we evaluated an outreach intervention for people recently diagnosed with breast, lung, or colorectal cancer. Our nurses called people as they were facing all the treatment decisions and care-coordination issues, the existential crises, and the emotional roller coaster of getting diagnosed with cancer.

I found it incredibly fulfilling to be a part of that, to coach and support the nurses, to help them support the patients. It’s wonderful to work on a study where patients get help from the intervention you are testing. We finished the intervention phase of the study over a year ago.

Recently, I read a quote from Susan Love, the well-known breast surgeon and researcher who was diagnosed with leukemia. She says, “The only difference between a researcher and a patient is a diagnosis.”

So you know where this story is headed. I received my diagnosis last summer and understood on a very, very different level what that experience feels like. I got diagnosed with DCIS, which stands for ductal carcinoma in situ, a type of non-invasive breast cancer.

As many of you know DCIS is a very problematic diagnosis. No one dies from DCIS. Most cases don’t progress to invasive breast cancer. There’s a lot of controversy over whether DCIS should even be considered cancer. It is a diagnosis that is almost certainly over-treated.

But too little is known about DCIS to know which cases will progress to invasive breast cancer—and which will not. There’s no way to predict what will happen to you. So you’re faced with the same kinds of treatment decision you have to make if you have an invasive cancer: partial mastectomy and radiation or full mastectomy. Hard to swallow if you “only have DCIS.”

So here I was on my own emotional roller coaster, having to make treatment decisions when I’m the kind of person who agonizes over what to order at a restaurant. I was experiencing all the things that the study patients were being helped with. But I didn’t have a nurse navigator.

I did have something else, though. I had all of you. And many of you helped support me in my journey over this last year with your amazing expertise, emotional support and friendship, and chocolate.

But what I really want to say is, the work we do here is so important. With research like the nurse navigator study, we are learning what real patients in the midst of health crises need most from an incredibly complicated health care system. And just recently, Group Health leaders decided that, based on our research, the nurse navigator will become part of regular care for women with breast cancer. So all the women like me with a breast cancer diagnosis will have the benefit of a nurse navigator.

But it’s not just our research on cancer care that’s important. It is all the work we do. Depression, heart disease, Alzheimer’s disease, back pain, the flu. These things affect all of us. The only difference between me the researcher and me the patient is my diagnosis. The practical research we do every day helps people like you and me and our families stay healthy. So it’s worth it to us to make a very big investment in the future of the Research Institute.

With the new GHRI Endowment we’re establishing this spring, it will be easier for our research teams to get money to do small, innovative studies that we can leverage to get really large grants that will make a big difference toward improving care and saving lives worldwide.

I think of this place like someone might think of their grandchildren. In the past 30 years we have done so much. And there are many, many years ahead. I would like to help ensure that. And I hope all of you will join me in ensuring that future. Thank you.

--by Evette Ludman, PhD