“How can you know us if you don’t count us.” Metastatic Patient Wants Changes to SEER

Martha Carlson, in this piece in CURE, outlines problems with the SEER database, especially for Metastatic patients.

The current data say that 89.9% of people diagnosed with breast cancer are alive at five years, but because recurrence data are not collected we don’t know how many of that 89.9% are living with stage 4 breast cancer. Though factually correct, the data misleads us. Since SEER doesn’t track cancer recurrences, including metastatic spread, a person who was stage 2 is always stage 2, even if she is alive at five years with metastatic progression that will eventually cause death.

We at METUP echo Martha’s frustration. The National Cancer Institute must find the resources to fix these glaring omissions in the SEER database. Only with accurate data can we start to find a cure.

Read the entire article here.

October 11 Die-in on the Capitol Lawn was the Largest One Yet

On October 11, 2019, METUP held its fifth annual Die-in on the Capitol Lawn. Over 200 men and women gathered to mourn for the 116 who die every day from Metastatic Breast Cancer, and to fight for those still living with the disease. 

The Capitol Lawn Die-in began in October of 2015, after the success of an impromptu Die-In at the LBBC conference in Philadelphia

Shannon Curtis appeared in person to sing The Day That They Hear Us. Shannon wrote the song in 2015 to honor the Metastatic community.


The Phyllis Groskin SABCS19 Activist Grant

Phyllis Groskin
The Phyllis Groskin SABCS19 Activist Grant

Phyllis Groskin, an early leader within METUP, recognized that the breast cancer advocacy world needed drastic changes. She was one of the brave people who stood alongside other men & women in silent protest at the worlds largest breast cancer conference in San Antonio. These yearly protests brought, and continue to bring both national and international attention to the lack of research being done expressly for those dying of breast cancer.

Phyllis was the author of a well-received paper which also gained national attention called Metastatic Patients and Clinical Trials. Her passion was to make sure future generations of men and women would have a better outcome after being diagnosed with metastatic breast cancer.

Phyllis’ death, in 2018, has been a significant loss to the MBC community. Although she is gone, Phyllis wanted her work to continue and her torch carried by the next generation of activists.

The Phyllis Groskin Activist Grants will go to like-minded activists committed to changing the landscape of breast cancer to attend the San Antonio Breast Cancer Symposium this December 10th – 14th.

Eligibility requirements and application are HERE.

Applications are open until August 31, 2019.

METUP Statement RE: Komen Florida

On Saturday, December 22nd, Susan G Komen of Florida released a video featuring Susan Brown, Senior Director of Education & Patient Support. The 2:11 min. video entitled “Say This, Not That” leveraged Susan G Komen National’s partnership with the Metastatic Breast Cancer Alliance to take subtly aim at the widely accepted statistics regarding Metastatic Breast Cancer patients.

Ms. Brown begins by referencing a study authored by MBC Alliance and the National Research Center that used a model to determine the number of women living with MBC which is 154,000 and growing. She goes on to say the study concluded the increasing number of women living with Metastatic Breast Cancer is due to an aging population and better treatments.

Ms. Brown fails to include the Population Impact of the study, which is biggest takeaway from the study. The study concluded that The increasing burden of MBC highlights the importance of documenting recurrence to foster more research into the specific needs of this understudied population. Additionally, the death rate from Metastatic Breast Cancer has not significantly changed in over 30 yrs. It has actually increased 10% for both women and men since 2015. (ACS).

Ms. Brown then focuses directly on the widely accepted statistic that 20-30% of those diagnosed with early stage breast cancer can and do go on to develop Metastatic Disease. Ms. Brown proudly proclaims that Komen Florida doesn’t say that because there is no reliable source for that data. Additionally, she claims that many of those previously treated for early stage breast cancer won’t develop Metastatic Disease.

That is a very concerning and frankly highly irresponsible to be reporting information that contradicts many studies and even peer reviewed data presented by respected Researchers at the 2018 San Antonio Breast Cancer Symposium held earlier this month. A study entitled “Dynamics of breast cancer relapse reveal molecularly defined late recurring ER-positive subgroups: Results from the METABRIC Study,” was presented by Christina Curtis from Stanford University.

One of the most important slides from that presentation can be found here:

Presented by Christina Curtis from Stanford University.

The very first point clearly called out that “While prognosis from early stage Breast Cancer has improved dramatically, 20-30% of patients will recur with incurable disease.” While it’s common knowledge that SEER does not count Metastatic Breast Cancer Patients correctly, this statistic isn’t one that was pulled out of the air on a whim. There is no benefit in disputing this information, in fact to do so is counteractive to Komens “Bold Goal,” Metastatic marketing plan and new partnerships they have been trying to forge within the community to prove their sincerity.

If Susan G Komen wants the Metastatic Community at large to take them seriously, that they are really trying to change, they’ll correct this with their Florida affiliate. Responsible & respected non-profits don’t talk out of both sides of their mouth. They can’t have a “Bold Goal” campaign when the issue is turned into a half-hearted objective by local executives. Responsible & respected non-profits have the same cohesive message across the board.

It is the position of METUP that Komen Florida do the following:

1. Pull the “Say This Not That” video from all social networks and public viewing.

2. Ms. Susan Brown issue a public apology for using the Metastatic Breast Cancer Alliance as a platform for her agenda in which she tries to discredit the seriousness of a disease that kills 114 lives every day. As a Senior Director of Education & Patient Support, she is neither educating nor supporting patients in saying many early stage patients won’t ever recur.

Susan R – President &
METUP Executive Board Members

Accommodations the week of October 8

Looking for a place to stay for the week of October 8?

If you cannot find an affordable place to stay during the week of the Stampede, Die-in, and Beth’s East Coast celebration of ife, please contact Marissa Goldsmith. She will try to make accomodations in her home. Note, that may mean an air mattress on the living room floor.

Note: Marissa’s house is not exactly conveniently located near the events (with the exception of the celebration). And the Washington Metro system can be iffy at off-peak times, especially on the blue line. But there are several options:

  • If you’re willing to leave at 7:00am and come home around 4:00pm, Marissa’s husband can take you in on his way to work. He works around Capitol Hill.
  • There is a rush hour bus 3 blocks from the house that will take you to the Pentagon. From the Pentagon, it’s a pretty easy Metro ride into town.
  • The house is about two miles from the Sprinfield Metro. If Marissa is around, she can give lifts to and from
  • Uber’s abound in this area. An Uber ride to downtown can run $35-$55, depending on time of day. But you can do things like take an Uber to the Springfield metro
  • .

  • If you have your car, you can always drive into DC. You should expect to pay $20-$30 for parking. You might get lucky and find street parking, but it’s only good for 2 hours.

We’re at SABCS!

If you’re at SABCS, we’ve put together a list of sessions of interest to Metastatic Patients.

December 5

  • Methods in BC clinical research 11am-12:45pm. Stars at night 3&4
  • Methods in BC clinical research 12:45pm-2:15pm. Stars at night 3&4
  • multilevel influences on BC disparities 12:45-2:15pm. Stars at night 1&2
  • Androgen, Progesterone and Glucocorticoid Receptors: Drivers of Breast Tumor Progression or Reprogramming of Steroid Receptors During Breast Tumor Progression 4:30pm-6:00pm. Stars at night 3&4.
  • CTCs and liquid biopsy 4:30pm-6:00pm.. Stars at night 1&2

December 6

  • Sacituzumab govitecan (IMMU-132), an anti-Trop-2-SN-38 antibody-drug conjugate, as ≥3rd-line therapeutic option for patients with relapsed/refractory metastatic triple-negative breast cancer (mTNBC): efficacy results11am-12pm. Hall 3
  • ABCF/AACR class12-1:15pm. Room 221
  • DIRECT ACTION outside Komen award lecture1:45pm-2:15pm. Hall 3
  • Komen lecturesThe Development of Synthetic Lethal Treatments for Cancer Alan Ashworth, PhD, FRS;Molecular Diversity of Human Breast Cancer: Biologic and Therapeutic Implications Dennis J. Slamon, MD, PhD 2:15-3:15pm. Hall 3
  • results from MONALESSA7 4-5pm. Hall 3

December 7

  • Spotlight on endocrine resistance 7:00am – 9:00am. Stars at night 3&4
  • spotlight on novel drugs for HER2+ 7:00am – 9:00am. Stars at night 1&2
  • GS3-06. Long-term follow-up of CALGB 40502/NCCTG N063H (Alliance): A randomized phase III trial of weekly paclitaxel (P) compared to weekly nanoparticle albumin bound nab-Paclitaxel (NP) or ixabepilone (IX) +/- bevacizumab as first-line therapy for locally recurrent or metastatic breast cancer 10:45am-11:00am. Hall 3
  • GS3-07. Genome-wide copy number analysis of chemotherapy-resistant metastatic triple-negative breast cancer from cell-free DNA 11:00amam-11:15am. Hall 3
  • Spotlight on endocrine therapy 5-7pm. Stars at night 1&2.
  • Spotlight on immune oncology 5-7pm. Stars at night 3&4.
  • Genentech advocacy briefing 7:30pm-9:00pm. Biga on the Banks: 203 S St Mary’s St, San Antonio, TX 78205, United States
  • immunomedics/cascadian HER2CLIMB 7:30pm-8:30pm. Marriott Plaza San Antonio: 555 S Alamo St, San Antonio, TX 78205, United States

December 8

  • Spotlight on Landscape of Mutations in MBC 7:00am – 9:00am. Stars at night 3&4
  • Spotlight on male bc (& other topics) 7:00am – 9:00am. Stars at night 1&2
  • Food and Drug Administration pooled analysis of outcomes of older women with hormone-receptor positive metastatic breast cancer treated with a CDK4/6 inhibitor as initial endocrine based therapy 10:45-11:45am. Hall 3
  • Debate: All women diagnosed with metastatic breast cancer should undergo next generation sequencing?1-2pm. Hemisfair 2&3
  • Mechanisms of Early Dissemination, Dormancy and Metastasis 1-2pm. Stars at night 3&4
  • The benefit of abemaciclib in prognostic subgroups: An exploratory analysis of combined data from the MONARCH 2 and 3 studies 3:30pm-3:45pm. Hall 3.
  • GS6-05. Gain-of-function kinase library screen identifies FGFR1 amplification as a mechanism of resistance to antiestrogens and CDK4/6 inhibitors in ER+ breast cancer 4:15pm-4:30pm. Hall 3.
  • GS6-07. EMBRACA: A phase 3 trial comparing talazoparib, an oral PARP inhibitor, to physician’s choice of therapy in patients with advanced breast cancer and a germline BRCA mutation 4:45pm-5:00pm. Hall 3.

Relevant Posters