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Using Connecticut to Illustrate The Great Metastatic Breast Cancer Divide

When I think of Connecticut, I think of Mystic Pizza, stunning fall foliage, stodgy insurance companies and Harvard vs. Yale. I also think that it is a good thing I don’t live there, because Connecticut is hard to spell.

Geographically, Connecticut is well-located–convenient to New York and Boston. Demographically, Connecticut offers a great breast cancer analogy.

Connecticut has a population of 3.59 million–if we round up very generously, that’s roughly the number of US people currently living with a history of breast cancer–all stages of breast cancer. (See footnote at the very bottom of this page.)

Imagine everyone in the whole state of Connecticut had breast cancer at some point or is currently in treatment for it. Now, how many Connecticutters are living with metastatic breast cancer, aka the fatal form of the disease?

That would be about two towns worth of people: Waterbury (108,802 people) and West Haven (52,907 people)–that gets us pretty close to the estimated 155,000 US people living with metastatic breast cancer.

Which brings us to the good old town of Groton, the Submarine Capital of the World. With 40,115 inhabitants, the population of Groton is equivalent to the number of US people who die annually from breast cancer–a number that has not changed significantly in the past 30 years.

No one dies from early stage breast cancer. When someone dies from breast cancer, it’s because the cancer has spread to a distant site such as bone, liver, lungs and/or brain.

Imagine if you lived in Groton and from January to December, 113 of your fellow citizens dropped dead with each passing day until the entire town was gone. What would you do?

My first instinct would be to move. I would jump in one of those submarines and get the hell out Groton, damn the torpedoes, full speed ahead.

Indeed, that is many non-metastatic people’s reaction. People generally don’t lean in to hear our stories…most lean far, far away.

Two years ago I was at Northwestern’s Lynn Sage annual breast cancer town hall, staffing an exhibit for the Metastatic Breast Cancer Network (MBCN). An attendee wandered up to MBCN’s table, picked up a brochure and read the title out loud: “‘Diagnosis Metastatic Breast Cancer’…METASTATIC? I don’t want to hear about THAT!” She dropped the brochure as if it were burning her fingers and backed away so quickly little puffs of dust practically rose in her wake.

Unfortunately, there is no hiding place from metastatic breast cancer. Just as rain falls on the just and unjust, so too does Stage IV breast cancer.

If you live in on the east coast, you might remember trailblazing news anchor Michelle Marsh–she died in 2017 at age 63 from metastatic breast cancer at her home in Bristol, CT.

Basketball fans might recall 2004 Boston College star player Clare Droesch–she died from breast cancer at age 36 in May 2018.

Another basketball player, Stacey Porrini Clingan of Bristol, Connecticut, was known for her key role on the University of Maine’s high achieving 1993-1997 teams. She died at age 42 in March 2018 from metastatic inflammatory breast cancer.

Here in Chicago, many people know that former Mayor Richard J. Daley came from a wealthy and politically connected family. Cancer does not care about clout–First Lady Maggie Daley died in 2011 at age 68 after seven years of living with metastatic breast cancer.

Another Chicagoan, Chance the Rapper has a net worth of $33 million. He is an amazing musician, a fantastic businessman and a generous philanthropist. But even he is powerless against metastatic breast cancer. His aunt, Kimberly Bennett, died of metastatic inflammatory breast cancer

Again, millions and millions of US people are successfully treated for breast cancer and are fine. A comparative few will find themselves exiled to Waterbury or West Haven and, God help us, Groton.

But for we few, we unhappy few, we band of MBC brothers and sisters, this is our reality: We will die with or from this disease. We did nothing wrong. We deserve to be acknowledged. We deserve specific patient education initiatives. We deserve to be a research priority. We deserve more.

Why are people with MBC banished to the shadows?

Ignorance and fear surely play a role. And, as a practical matter, few cancer clinics have the resources to offer support services specifically geared for those living with metastatic breast cancer–individuals who represent the minority of the breast cancer patient population. But a lot could be done with minimal investment of time and money. Here are some suggestions:

Conduct an inservice event for ALL departments: patient intake, clinic staff, etc., on the basics of metastatic breast cancer explaining the differences between early and metastatic breast cancer. Give a range of patient studies illustrating the varied course of the disease: a young person with TNBC, a HER2+ patient, an ER/PR+ HER2- patient. Just because someone works in an oncology clinic doesn’t mean they know a lot about MBC.

Review how metastatic patients are “navigated” vs. early stage patients. How are you helping these patients–particularly the newly diagnosed? In my experience, there is NOTHING for the Stage IV patients–we don’t fit the early-stage patient flow chart–we have to find our own way. Do you have “paper” strategies that you wrote up to satisfy administrative documentation requirements? Or do you have a REAL ongoing effort based on actual patient interaction? Create a patient panel–listen to their wants and needs.

Evaluate your efforts for helping patients understand their diagnosis and treatment options. I continue to meet a staggering number of patients who are in treatment but clearly don’t understand why they are getting a specific drug and what options may be available once that drug stops working.

Discuss what happens when patients finish their treatments–or don’t, as the case may be. If I ran a cancer clinic, there would be no bell in the infusion area. I don’t care if “Everyone is invited to ring it.” How would YOU like to be there week after week in perpetuity attached to an IV pole as as others celebrate their final appointments?

I am not saying it’s wrong to celebrate the end of treatment. I am saying it’s insensitive to have a dance party in the infusion suite, in front of other patients who will be reporting for chemo for the rest of their lives. Why not quietly hand out certificates of completion?

Consider honoring Stage IV patients. We know that ALL drugs got their start in clinical trials–and people with metastatic disease were the ones enrolled in most Phase 1 trials.

Millions of people with early stage cancer are alive today because metastatic patients willingly participated in clinical trials–of all phases. Why can’t we thank them? Surely even the tightest budget could extend to a simple plaque.

See You in New Haven This October…

Finally, if you DO live in Connecticut and you want to learn more about metastatic breast cancer you’re in luck. On October 5, 2018, join MBCN’s Shirley Mertz at Komen New England’s first annual Breast Cancer Symposium in New Haven, CT. Attendees will learn about research advances, improving care experience for metastatic breast cancer patients, and advocacy work. Other speakers include Elizabeth Morris, MD, FACR and Nikhil Wagle, MD. Register at https://komennewengland.org/new-haven-breast-cancer-symposium/

You’ll find more MBC event listings here. Thanks for reading!

*According to the American Cancer Society, more than 3.5 million US women with a history of breast cancer were alive on January 1, 2016, and approximately 40,610 women and 460 men are expected to die from breast cancer annually. Our US cancer registries do not actually track metastatic breast cancer recurrence, which is how the majority of people end up in our ranks. So the 155,000 number is only an estimate.