About 125 patients, supporters and health care professionals attended “Time for Metastatic Breast Cancer Perspectives” at Northwestern Memorial Hospital’s Pritzker Auditorium on March 8, 2018.
The conference was Susan G. Komen Chicago’s first ever metastatic breast cancer event and featured oncologists’ presentations, remarks from patient advocate and Metastatic Breast Cancer Network (MBCN) President Shirley Mertz, a patient panel and a resource fair with tables hosted by local and national organizations, including MBCN and Living Beyond Breast Cancer (LBBC). The MBC Alliance, Inflammatory Breast Cancer Research Foundation, SHARE and Male Breast Cancer Coalition sent support materials. Contessa, Merck & Co., Odonate and Pfizer Oncology provided financial support.
University of Chicago’s Dr. Rita Nanda hosted a breakout session on triple negative breast cancer; Northwestern’s Dr. Ami Shah offered an overview of HER2+ developments. The main presentations were live streamed–the recording is on YouTube: https://www.youtube.com/watch?v=j57Q-Gy65YI&feature=youtu.be
Johns Hopkins’ Dr. Ben Ho Park: “Breast Cancer Mutations as Targets for Therapy”:
Dr. Ben Ho Park: “ER Positive Breakout Session”:
MBCN’s Shirley Mertz: “Be Your Own Best Advocate”
MBC Patient Panel Discussion; Dr. Sheri Prentiss, moderator; (I am one of the panelists, see: https://youtu.be/j57Q-Gy65YI?t=2h31m27s )
Kudos to patient advocate Sheila McGlown…Sheila, who lives near St. Louis, hopped on the Amtrak to join us–it was wonderful to see her–and her contribution to the patient panel discussion Q&A was outstanding…Sheila made a heartfelt appeal for us all to address disparities in cancer care and outcomes. Sheila is awesome! (Sheila’s story is here: https://www.storyhalftold.com/meet-sheila-mcglown)
At the MBCN table we spoke with patients near and far–in addition to our fellow Chicago residents, we met people from Milwaukee, Rockford, IL; and even one patient from Washington DC (she comes to Northwestern for its inflammatory breast cancer expertise). It was also an opportunity to learn more about local groups Komen works with such as the Chicago Metropolitan Breast Cancer Task Force and ALAS-WINGS, a group serving Hispanic women.
One caveat: Sometimes people go to an event like this and because they see few people who “look” like cancer patients, assume that metastatic breast cancer can’t be too bad. The Chicago audience members did look great. But these attendees are the “healthy” cancer patients–MBC patients who are wrestling with tough treatments and attendant setbacks are not at events like this–they are in the clinic, in the hospital or resting at home. I had one friend who hoped to attend but she was hospitalized with neutropenia–another is dealing with progression and trying to determine her next treatment. It remains a difficult diagnosis.
The conference tagline, “Time for Metastatic Perspectives” is particularly apt. Indeed, as a poster to MBCN’s Facebook page put it, “Well, it’s about time!”
Why did it take 21 years for the Chicago Komen affiliate to have an MBC event? I don’t know. Other regions have been more proactive. Komen affiliates in Los Angeles, Seattle, Milwaukee, Minneapolis, Ohio, Philadelphia and New York have all held local events for people with metastatic breast cancer.
It’s an issue that goes beyond one group. Northwestern, for example, is home to the Maggie Daley Center for Cancer Care as well as the Lynn Sage Comprehensive Breast Center–both of these women died from metastatic breast cancer–every year Northwestern hosts the Lynn Sage Breast Cancer Town Hall–there are brief presentations and then the experts field audience questions. The 2017 topics offered little in the way for people living with Stage IV breast cancer. If the event is named after someone who died from MBC, shouldn’t there be some discussions tailored to those living with the disease?
Many breast cancer events focus on those with early stage disease for one simple reason: numbers. Currently, there are about 3 million people living with breast cancer in the United States–of that group, about 150,000 are living with metastatic breast cancer. We are outnumbered (which is a good thing).
Also, metastatic breast cancer is hard to package into an uplifting narrative. Initiatives to raise awareness for people living with MBC have names like “A Story Half Told” and “Silent Voices.” This is probably because the sponsoring organizations rejected titles such as “The Debbie Downers of Breast Cancer” and “Oh Boy, How Depressing to Be You.”
Many people don’t realize that no one dies from early stage breast cancer–it’s not the lump in your breast that kills you–provided that the cancer is confined to the breast and that lump can be surgically removed or eradicated via chemo. Metastatic breast cancer means the cancer has spread to a distant site–typically bones, liver, lungs, brains or some combo therein.
The majority of people living with Stage IV breast cancer were diagnosed at an earlier stage–but went on to have a metastatic recurrence–sometimes 10 years or longer after finishing their treatment. This is an uncomfortable reality–if you have been treated for early-stage breast cancer, you probably don’t want to consider that for 20 to 30 percent of people like you, metastatic breast cancer is a possibility–even if you caught it early and did everything your doctors advised.
Any cancer diagnosis at any stage well and truly sucks. The challenge with breast cancer is that few organizations and individuals acknowledge that not everyone has the curable form of the disease. If a Stage IV patient goes to a cancer walk or fundraiser, he or she will likely be invited to participate in the “Survivor Parade” or visit the “Survivor Tent” and will probably be issued a “Survivor” t-shirt.
Many people insist cancer patients are survivors since the moment of diagnosis. Sadly, the actuarial tables of every insurance company disagree: Metastatic breast cancer is chronic, progressive and ultimately fatal. You can wear your “Survivor” t-shirt to a life insurance medical exam–the underwriter will likely remain unswayed.
If you have cancer–any cancer–many people assume you brought this upon yourself–you smoked, drank, ate poorly, had a poor attitude, didn’t take care of yourself, skipped mammograms/annual screenings or have faulty genes. One possible reason for these misconceptions is self-preservation–if this could randomly happen to someone else, maybe it could happen to YOU, too.
At some fundraising events the Stage IV patients are omitted entirely. Sometimes a moment of silence will be held for someone who died from the disease and as the late Ellen Moskowitz used to put it “then they go right on ignoring us.” Some gala attendees have no idea that the person died from metastatic breast cancer–they assumed the person stopped trying or suffered some awful complication. Many people–even those with early stage breast cancer–don’t understand there’s no cure for metastatic breast cancer.
In 2018, MBC perceptions are slowly changing– you will see “Forever Fighter” or “Lifer” tshirts at some races–and we are seeing more MBC stories being told in national outlets. There are many reasons for this–social media has made it easier for patients to connect and make themselves heard. And those CDK 4/6 inhibitors aren’t going to sell themselves–we now have three pharmaceutical companies with new drugs all competing for a share of the largest breast cancer subtype–ER/PR positive. And of course as those drugs move upstream to early stage patients the market is considerably larger.
Susan G. Komen died from metastatic breast cancer–a disease that continues to claim 40,000 US lives annually and 500,000 worldwide. This MBC conferencence was an important first step. I hope we can all build on it.
The key question to be asked in Chicago and across the nation is not “What took so long?” but “What’s next?”