New Focus On Breast Cancer Survivorship

Tue, October 11, 2011

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KMUW / Fletcher Powell

With the recognition of October as National Breast Cancer Awareness month, much attention has been paid to the success of frequent screenings and improved treatment in helping to lower the rate of breast cancer deaths in the United States. But until recently, the focus didn’t extend far into what happens after treatment is finished.

As part of our Sound Mind and Body series, a look at the way doctors are beginning to focus on the treatment after the treatment.

When Katie Lohrenz said she was thinking about having a breast reduction, her doctor insisted that Katie have a mammogram first—just to be sure. Katie’s mother had been diagnosed with breast cancer not long before, and the doctor wanted all the bases covered before any surgery.

When her results came back, they asked her to come in again. The doctor told her everything was probably fine, but they wanted to double-check.

Lohrenz: I went back for the second mammogram, and they immediately took me in with the radiologist after that. And instead of it being an 80% chance that it was nothing, it was something like an 80% chance that it was cancer.

Because Katie was so young—she was 24—her doctor said the usual radiation treatments might present complications.

Lohrenz: It really freaked him out, the idea of having a 24-year-old and bringing her in and having all that radiation, bringing me in every six months for mammograms and whatever—the cumulative radiation over my lifetime would expose me to risk of another cancer.

So she had one other option.

Lohrenz: He said, ‘You need to go have a mastectomy. And I can’t tell you to go have a mastectomy, but I can tell you that the idea of that kind of radiation scares me and I don’t feel comfortable prescribing that.

Not wanting to live with constant mammograms and MRIs for the foreseeable future, Katie opted for the mastectomy.

Lohrenz: I didn’t want that to be the rest of my life and just so much time ahead of me that that could be my reality, and I thought I would just not think about it if I just… cut them off. And that didn’t really turn out that way, because I think about it all the time.

The problem was, nobody told Katie what to expect. She had plenty of people telling her what was going on after she was diagnosed and right after her surgery, but nobody clued her in to how she would feel after it was all… “over.”

Lohrenz: I came out and I could not stop crying, I was—Grandpa and Grandma came over to see me and I was in the basement and I can’t come upstairs because I cannot, like, “why am I crying? I don’t know why I’m crying, but I have lost it and I don’t have it back yet…”

And this is just the kind of thing that some hospitals and medical centers are hoping to help. Because while it may be true that no two people have the same experience with cancer, it’s also true that some people are starting to think there’s a better way to help people through the entire process—which means not just letting them go after the medical treatment, but instead helping them through what comes next.

Carr: …the majority of the people we see coming through the program are actually women that have been out of treatment for several years…

This is Angie Carr, the Patient Navigator for the KU School of Medicine Breast Cancer Survivorship Center in Wichita.

Carr: ...and they’re wanting to deal with some of the side effects that have happened with their treatment, and maybe kind of develop a life plan to deal with those side effects.

Carr says that, while the Breast Cancer Survivorship Center serves people in all stages of dealing with cancer—from right after diagnosis all the way through the years after treatment—much of what they heard when they were developing the center sounded a lot like what Katie describes:

Carr: …once people finished their treatment, they really weren’t sure where to go from there. There were some feelings of anxiety, not seeing their regular oncologist and those medical professionals as frequently as they were, and really where to go from there. And so this is designed to maybe help fill that gap and void a bit…

She says filling this gap involves offering a variety of services, from a closer look at potential treatments, to consulting with a dietician to create post-treatment health plans, to partnering with other organizations around town for exercise and physical therapy services. Carr also says they’ll often recommend a person speak with one of their therapists, someone they can work with to get through the more unexpected side of recovery:

Carr: Each of them has a very distinct specialty, which would be—one deals with the areas of sexuality and intimacy, one is more focused on the emotional areas of survivorship, and then we have one that’s more focused on cognitive rehab, or “chemo-brain” is kind of the more common term.

Carr makes sure to say that the center makes recommendations, but that no one is obligated to take those recommendations. She wants it to be clear that she knows each person is different, and that people tend to come to the center when they feel this approach is what they need.

Carr: I think it’s up to the individual. We can see them right after they’ve been diagnosed, we’ve got one that will be coming to see us and she’s not far out from her time of diagnosis, and then we can see them—we have one that’s going to be seeing us and she’s, was diagnosed around ’91, so she’s quite a few years out. So there’s quite a range for people.

It’s this holistic approach to treatment and post-treatment that seems to be the trend now. Both KU Med’s Survivorship Center and Via Christi’s new cancer institute—which is advertised as a “patient-centered” facility—offer some form of this idea of treating the entire person, not just the cancer. And others are following closely behind. So while the result may not be as easy to quantify as statistics about declining breast cancer deaths, people like Katie Lohrenz may finally have someone who can help them through what comes next.

Funding for KMUW’s Sound Mind & Body series is made possible, in part, by Via Christi Health.