A Conversation with Kathleen Swiger about LBBC’s Survey of Women With Triple-Negative Breast Cancer

IMG_2655

Kathleen Swiger & Janine Guglielmino in front of the poster at the San Antonio Breast Cancer Symposium 2014.

By Chris Wilson, Triple Negative Breast Cancer Foundation Trustee

Kathleen Swiger stands by her poster in the “Psychosocial and Behavioral” section of the vast hall at the San Antonio Breast Cancer Symposium, the second of two that Living Beyond Breast Cancer (LBBC) presented at this important meeting. There’s a lot interest from the attendees, both advocates and medical professionals. They study the data and ask Swiger questions about the results.

“The posters are just the tip of the iceberg,” she says, pointing to the panels behind her. “There is so much more data in the full survey.”

The LBBC study is the first survey of psychosocial, nonmedical, needs of women with triple-negative breast cancer. It provides clear and compelling evidence that women with this subtype of the disease have higher levels of fear, anxiety and worry than women with other subtypes of breast cancer. In addition, these concerns continue throughout their treatment and beyond.

“Women with other subtypes report that their negative emotions reduce over time, as they move from treatment into the post-treatment period,” Swiger says. “But this is less true with the triple-negative population. Their concern appears to be driven entirely by their disease. The anxiety appears to be consistent across different age groups and geographic areas. The one factor that we found really increases anxiety, though, is having small children at home and worrying about their care.”

Swigerand LBBC’s Janine Guglielmino, MS, are the lead investigators on the study.  Swiger clearly has a deep passion for her work. She notes that before the actual survey, the LBBC team conducted a series of focus groups across the country to identify issues important to the TNBC community.

“In some areas, we had women who drove four hours to participate in a focus group. It was that important to them to have their voices heard and to have the chance to talk to people who were sharing their experience,” Swiger says. “In San Francisco, the group asked if we would pay for another two hours of parking so they could go to lunch together after the session – and keep talking to each other. We found that many of these women feel very isolated. Their experience is different from that of other people with breast cancer.”

For some women, this isolation is geographic – being in an area in which there are few others with a triple-negative diagnosis. That could be either rural or urban. For others, it stems from an age difference, huge differences in the treatment course, or a combination of factors. One young African American woman from a small town in North Carolina talked about going to a support group in which all the other participants were older women dealing with the effects of hormonal therapy. She felt had nothing in common with them.

Swiger also noted that many of the focus group participants struggled with the term “triple-negative.”

“We found that many people have never heard of triple-negative breast cancer, or know little about it before their diagnosis. They hear the term triple-negative and to some it sounds like ‘three strikes and you’re out’, she says. “It’s very frightening. Then they look online and what they find can be scary and confusing.”

The focus groups were used to develop the survey, which compared the responses of 656 women with triple-negative breast cancer with those of 1954 women with other breast cancer subtypes. LBBC worked with the Triple Negative Breast Cancer Foundation and other patient advocacy organizations to recruit women across the country to take the survey.

The combination of feeling isolated and hearing or reading negative statements about TNBC contributes to a clear need for information specifically focused on their condition. The LBBC survey also showed that people with TNBC tend to be active information seekers and that they have a strong preference for information tailored to their specific breast cancer subtype.

Eric Winer, MD, a leading breast cancer specialist from Dana-Farber Cancer Institute, emphasizes the need for more a more balanced and accurate view of triple-negative breast cancer. “It’s important for women to know that early-stage triple-negative breast cancer is a very treatable disease, and that it responds very well to therapy,” he says. “There is an urgent need for better ways to prevent recurrences and to treat metastatic disease, but we also need to make better information available to the patients who are facing triple-negative breast cancer.”

LBBC has been working to fulfill that need, which included partnering with the Triple Negative Breast Cancer Foundation to sponsor a special triple-negative track at their 2014 Annual Fall Conference: Breast Cancer Today: Individual Treatments, Shared Experiences.  Both organizations have committed to repeating that program in 2015.

The posters and a summary of the findings can be viewed at lbbc.org. The full survey results will be made public in early 2015.

Christine Wilson

From the 2014 San Antonio Breast Cancer Symposium

If you’d like to read a press release about the poster presentation please click here.

5 thoughts on “A Conversation with Kathleen Swiger about LBBC’s Survey of Women With Triple-Negative Breast Cancer

  1. Pingback: Weekly Round Up: Getting Off The Hamster Wheel | Journeying Beyond Breast Cancer

  2. I too am a triple negative breast cancer survivor…..I agree that the worry and anxiety is through the roof! It’s a waiting game and I Am always so irritated by people saying that they think its over….it’s never over! I have a positive but realistic outlook on my life with tnbc. Oh well……

  3. I too feel very isolated being a TNBC survivor. I don’t fall into most ‘normal’ groups of survivors. I’m a young, working mother with young children at home and wonder about the possibility or whether it’s even smart to add to our family as we’d like to! I also feel very anxious as I feel there is nothing I can do to help prevent a reoccurrence, as a lot of our other breast cancer survivors can by chemo-prevention. I’d LOVE to see more information tailored to our subtype!

  4. I fit in no cultural stereotype, and I am silenced by my own. I am a Stage IV, non-BRCA, no genetic pre-disposition, no family history, post-menopausal Caucasian otherwise extremely healthy woman with mets to bones, in lungs and liver. Has anyone ever noticed how TNBC is the *first* “designer” cancer, whenever one reads about it? If one has TNBC, it is *always* followed by: “TNBC is an aggressive cancer more common in African-American, Hispanic and young women, and to those with the BRCA gene ” Marvelous. Not only am I erased by the “hormonal” crowd, which are the majority of bc–mets and otherwise, but I am rendered invisible by my own tribe, which markets my cancer to specific cultural stereotypes. I’ve never read or heard Her-2, etc. being described as mbcs specific to “older white ladies of a certain age.” This constant isolating–paring down TNBC to accommodate certain groups does a good deal of harm to many of us out there who literally have NO support system at all and are silenced even in our own. If you all want to help, start addressing ALL women with TNBC including STAGE IV, and not just the early stages. If you are being honest, will KNOW TNBC-ers mets more often and that our options once it does are LIMITED (I assume someone oout there was in San Antonio and knows of R. Nanda’s presentation????) And if the research out there continues to be based on “cultural stereotypes”, women of all ages, colors, races with this horrible illness will keep dying. WE ALL COUNT!

  5. I was diagnosed triple negative in 1999, when there was not even a term for it. No treatment, just some radiation because we have no chemo for this new type. I was 36, my mother died from mets 19 years after her initial diagnosis at age 35. To hear that i had cancer and that even the best doctors in NYC had no idea what to do for me was daunting. Not to mention the 5 year survival rate at that time. I had a second primary in 2002, for which they did have treatment. I have the fortune to celebrate 15 years cancer free, against the odds for this disease. I have participated in over 11 studies around the country. I hope that all this work on my part will bring more and better answers than those i received. I remain unmarried, have no children to whom I may have passed on the gene. It is not exactly the life I planned for myself. However, I am reminded daily of the effort to move forward, representing young friends of mine who were not so fortunate and have passed. I am caucasian, work in the medical field with advocacy and I still question many of my life and daily choices. I tried several new Ais which were not specific to my age at the time. Not good results for me. Good to know they are finding better uses and timings for treatments now. So much progress made in 15 years, hooray!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s