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Health Central and journalist Sunny Sea Gold recently asked some MBC patients what they would like their loved ones and newly diagnosed patients to know about the disease.  Here is the respondents–who have been living with MBC—for three, six, even 23 years—had to say.

Patient to Patient: Statistics Do Not Dictate Your Journey

“What has stuck with me during my 16 years of living with metastatic breast cancer is ‘You are a statistic of one.’ I especially think of this when I hear that a friend with my type of metastatic disease has passed away,” says Shirley Mertz, chair of the Metastatic Breast Cancer Alliance. The five-year average relative survival rate for MBC may be 27 percent, but how long an individual patient lives depends on a huge number of factors including age, type of tumor, general health, treatments and how much the cancer responds to them, according to the American Cancer Society). Remember, your illness and experience is unique to you.

VIEW AS:LIST|SLIDES5 OF 16NEXT

Seek an NCI Cancer Center If You Can

Along with finding a oncological breast specialist, seek care at a top research and/or teaching hospital. “I wish I had started at an National Cancer Institute-designated cancer center. They are on the cutting edge of research, the best of the best,” says Katherine O’Brien a patient advocate with MBCN who was diagnosed with Stage IV breast cancer in 2009. “You can find a list online. If it’s impractical to pursue care at an NCI center, you can at least seek a second opinion at one.”

Read the article in its entirety here: https://www.healthcentral.com/slideshow/metastatic-breast-cancer-advice#slide=5

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Here’s a new wrinkle on Herceptin…

Potentially some patients could get a subcutaneous version (vs. the current infusion)

The MBC-related part of the announcement is as follows:

In addition, it is indicated for use in combination with paclitaxel for first-line treatment of HER2-overexpressing metastatic breast cancer and as a single agent for treatment of HER2-overexpressing breast cancer in patients who have received 1 or more chemotherapy regimens for metastatic disease. Patients should be selected for therapy based on an FDA-approved companion diagnostic for trastuzumab.

This raises a couple of questions: 
1. Will the cost be any different? 
2. Some of the patients could get this an a single agent. But for the patients who are getting this in combination with paclitaxel (a chemo infusion aka Taxol), what is the advantage of a subcutaneous Herceptin delivery? (Perhaps shorter time in the in infusion chair?)

The Food and Drug Administration (FDA) has approved Herceptin Hylecta (trastuzumab and hyaluronidase-oysk) for the treatment of HER2-overexpressing breast cancer.

Herceptin Hylecta is a combination of trastuzumab, an HER2/neu receptor antagonist, and hyaluronidase, an endoglycosidase used to increase the dispersion and absorption of coadministered drugs when administered subcutaneously. The product contains the same active ingredient as Herceptin (trastuzumab; Genentech) but is administered by subcutaneous (SC) injection.

Specifically, Herceptin Hylecta is indicated for adjuvant treatment of adults with HER2 overexpressing node positive or node negative (ER/PR negative or with 1 high risk feature) breast cancer: as part of a treatment regimen consisting of doxorubicin, cyclophosphamide, and either paclitaxel or docetaxel; or as part of a treatment regimen with docetaxel and carboplatin; or as a single agent following multi-modality anthracycline based therapy. In addition, it is indicated for use in combination with paclitaxel for first-line treatment of HER2-overexpressing metastatic breast cancer and as a single agent for treatment of HER2-overexpressing breast cancer in patients who have received 1 or more chemotherapy regimens for metastatic disease. Patients should be selected for therapy based on an FDA-approved companion diagnostic for trastuzumab.

The approval of Herceptin Hylecta was based on 3 studies in which efficacy, safety, and tolerability of the SC product were evaluated. In the phase 3 HannaH study, the SC administration of Herceptin Hylecta was found to be non-inferior to Herceptin administered intravenously (IV) with regard to efficacy as well as pharmacokinetics. The SafeHER study, which evaluated safety and tolerability, found the safety profile of Herceptin Hylecta to be consistent with that of the IV formulation. In addition, more patients preferred the SC treatment over IV therapy in the PrefHER study.

Herceptin Hylecta is a ready-to-use formulation; the dose is administered subcutaneously over approximately 2–5 minutes. The product will be supplied as a single-dose vial containing trastuzumab 600mg and hyaluronidase 10,000 units per 5mL (120mg/2000 units per mL).

For more information visit gene.com.

See the press release here: https://www.roche.com/media/releases/med-cor-2019-02-28.htm

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NCCN Guidelines for Patients includes a metastatic breast cancer publication.

You can access it online at this link:
https://www.nccn.org/patients/guidelines/stage_iv_breast/index.html

FYI: National Comprehensive Cancer Network (NCCN) is an alliance of 28 cancer centers in the United States, most of which are designated by the National Cancer Institute (one of the U.S. National Institutes of Health) as comprehensive cancer centers.

NCCN was created in 1995. It is a national alliance that develops and institutes standards of care for the treatment of cancer and performs outcomes research.

NCCN develops and communicates scientific, evaluative information to better inform the decision-making process between patients and physicians, ultimately improving patient outcomes.

The core resources made available by NCCN are the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®). These guidelines are the recognized standard for clinical policy in oncology and are the most comprehensive and most frequently updated clinical practice guidelines available in any area of medicine. Covering 97 percent of all patients with cancer and updated on a continual basis, the NCCN Guidelines® are developed through and explicit review of evidence (clinical trials, existing treatment protocol, etc.) integrated with expert medical judgment and recommendations by panels that are made up of representatives from the 28 NCCN Member Institutions.

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NEW YORK, Oct. 13, 2018 /PRNewswire/ — Today, the Metastatic Breast Cancer Alliance launched MBC ConnectTM, a free mobile and web-based tool for patients with metastatic breast cancer (MBC) that will build a powerful database of patient information to help drive research, discoveries, and advances for the MBC community. MBC Connect provides access to an interactive patient registry and a research portal with opportunities to explore de-identified patient data. The tool will also create a link between patients and potential relevant clinical trials and research studies.

“MBC Connect is designed to address some very serious challenges in the MBC community,” said Marc Hurlbert, Chairman, MBC Alliance. “It not only represents an opportunity to unlock the mysteries of a marginalized patient population, it also represents significant opportunity for a disease that’s only received a fraction of breast cancer research funding.”

We are thrilled to announce the official launch of MBC ConnectTM. Be a catalyst for research, discovery and hope through the secure, easy-to-use MBC Connect registry, patients & caregivers can drive advances for #Metastaticbreastcancer #research. #MBCconnect #bcsm #breastcancer pic.twitter.com/OfqULWziff

— DrLoveResearch (@DrLoveResearch) October 14, 2018

MBC (or stage IV breast cancer) is defined as when cancer has spread beyond the breast to other organs in the body, most often bones, lungs, liver, or the brain. At stage IV, breast cancer is considered treatable but not curable. While it is estimated that up to 155,000 people in the U.S. are living with MBC, the exact number remains unknown. That’s because existing population-based cancer registries do not count metastatic recurrences. Further, fewer than five percent of adults diagnosed with cancer ever participate in a clinical trial, including those diagnosed with MBC, which leaves researchers without the robust data set necessary to drive new discoveries.

Traditionally, a patient registry is a place where patients can sign up and enter information about a specific condition or disease, which is standardized and then used to inform health research. However, most registries do not provide opportunities for patients to update their information or engage beyond initial sign up.

MBC Connect offers patients and caregivers an interactive experience where they can regularly update their information as their MBC experience changes over time. Patients and caregivers can respond to five brief surveys that capture information about who they are, their history with MBC, and their quality of life. Patients can also build a holistic treatment profile that captures information about their treatments over time. Participants will regularly receive personalized insights, including MBC news and events, and potential clinical trial opportunities.

“As a person living with MBC each day, I believe that MBC Connect – a resource developed by patients, for patients – will help accelerate research for the benefit of a community that demands progress,” said Shirley Mertz, President of the Metastatic Breast Cancer Network and a stage IV breast cancer patient. “Our goal is to make sure that patients are active and engaged partners in research – not merely subjects.”

All patient data will be de-identified, encrypted, and stored in a HIPAA-compliant database that can be accessed via the “Explore the Data” button at www.mbcconnect.org. Thus, MBC Connect provides a rare opportunity for patients to not only own and update their own information, but to analyze aggregated patient data themselves.

“MBC Connect can help patients feel connected to fellow MBC patients, and their physicians and care teams like never before,” said Timothy J. Pluard, MD, Medical Director of Saint Luke’s Hospital Koontz Center for Advanced Breast Cancer in Kansas City, Missouri. “This level of information sharing and insights will help foster a sense of confidence and knowledge among patients that strengthens the doctor-patient relationship, which is such an important part of the patient experience.”

MBC Alliance will release the tool to four more countries in 2019. The patient app is available for download in the App Store or Google Play in English and Spanish. For the desktop version of the application, click here.

Check it out! #MBCconnect https://t.co/mbMjLPSVI8

— MetastaticBCNetwork (@MBCNbuzz) October 15, 2018

About the MBC Alliance 
The Metastatic Breast Cancer Alliance (MBCA) is a consortium made up of representatives from 32 nonprofit organizations and 11 pharmaceutical/biotech companies, along with 18 individual patient advocates, many of whom are living with MBC. The mission of the MBCA is to improve the lives of, and outcomes for, those living with metastatic breast cancer and their families through increasing awareness and education about the disease and advancing policy and strategic coordination of research funding, specifically focused on metastasis, that has the potential to extend life, enhance quality of life, and ultimately to cure. For more information visit www.mbcalliance.org.

Media Contact: 
Courtney Walker
Executive Vice President
Y&R-PR
courtney.walker@yr.com 
+1 212 303 2309

SOURCE MBC Alliance

Related Links

http://www.mbcalliance.org

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by A. Pawlowski / Oct.04.2018 / 12:46 PM CDT / Source: TODAY

Like many cancer patients finishing their treatment, Alexsandra Dietrich rang a bell at her clinic to mark the end of chemotherapy.

“It was one of the best days of my life,” Dietrich, 21, told TODAY, her voice breaking. “I was overwhelmed with happiness… Every time I went to chemo, I saw the bell [and] it gave me the sense of hope that one day I’m going to be able to ring it and I don’t ever have to come back.”

Dietrich, an Ohio State University student, was diagnosed with Hodgkin’s lymphoma in February when a lump suddenly popped up in her neck. She had to move back home to Florida and endure chemotherapy every other Tuesday for six months. It left her “helpless” every time for the next few days afterwards, she said.

So on that last day of chemotherapy in August, Dietrich — surrounded by her family and medical team — wept as she rang the celebration bell at the Moffitt Cancer Center in Tampa, Florida. The powerful moment went viral, with the video featured on TODAY:

The bell ringing ritual at the end of chemotherapy or radiation has become common in hospitals and clinics across the country. Patients proudly post the videos online. But the joyous celebrations have their critics who say they lack sensitivity and have no place in facilities where others with no hope for a cure can see or hear them.

In every chemotherapy infusion suite, there are cancer patients who will never finish treatment. They may be dying or have to endure brutal chemotherapy for the rest of their lives. It’s “insensitive to have a dance party” in front of them, wrote Katherine O’Brien, a patient advocate with the Metastatic Breast Cancer Network, on LinkedIn last month. She’d rather see the staff quietly hand out certificates of completion.

Katherine O’Brien has metastatic breast cancer, the fatal form of the disease. She estimates she’s had 100 oncology appointments since being diagnosed in 2009: “There was no ceremony for me for achieving that.”Courtesy Katherine O’Brien

O’Brien, who was diagnosed with stage IV breast cancer in 2009, is on her fifth line of treatment as the cancer has spread to her bones and liver. Her treatment is for life. She doesn’t go to her clinic looking to be offended, she said, but she’s taken aback by the lack of acknowledgment that not everyone has early stage breast cancer and will finish their treatment.

“I understand… it’s such a good feeling to know that you’re done. But unfortunately, that’s not the case for everyone,” O’Brien, 52, told TODAY.

“People are happy for those who finish their treatment, but they’re sad for themselves. It’s often hard not to feel a pang of sadness or maybe even jealousy — ‘I wish that was me, I wish I could do that, I wish I could join that celebration, but I can’t.’

O’Brien’s friend in the online community of Breastcancer.org recently told her about watching a bell ringing ceremony that involved balloons and lots of happy family members. “Couldn’t that have happened in the parking lot?” she asked.

“To me the bell is a way of screaming ‘I am OK, treatment is done, and I have my life back!!’ Great. For you,” wrote Judit Saunders, a Calgary woman living with metastatic breast cancer, in her blog this week.

“Have you taken a minute to look around your infusion room? Do you know how many of these people are simply trying to extend their lives at the expense of horrific side effects you couldn’t even comprehend to simply live a little bit longer? When you ring that bell, it reminds those of us in treatment forever what will never be. How unlucky we truly are.”

Hearing the #BraveryBell brought Stacey to tears. She got to ring it when she completed her chemotherapy treatments at @pmcancercentre. You can help patients like Stacey at http://braverybell.ca/stacey-brooks  #ConquerCancer

Di’s Life Reshuffled@ThanksCancerx2

“Bravery” bells are incredibly insensitive to stage IV patients who are in treatment for life. They never get to ring it. Also, in the case of breast cancer, 20 – 30% of early stagers will metastasize…ringing a bell only to later have mets is traumatizing. #endchemobells

See Di’s Life Reshuffled’s other Tweets

The bell setup varies. In some clinics, it’s installed at the nursing station in the middle of the infusion suite; in others, in the lobby or a hallway.
‘COURAGE TO CONTINUE’

At the Moffitt Cancer Center in Tampa, the bell has been available outside the entrance of the infusion center since 2011. Krissy Frantz, RN, the clinic operations manager, said she’s never received any negative feedback from patients about it, but would address any concerns if they arose and appreciates the feedback.

“When people hear the bell being rung, it offers them hope and gives them courage to continue,” Frantz said. “The patients who are here seem to be happy for those other patients.”

Besides marking the end of treatment, patients can ring the bell to celebrate other milestones like receiving a scan that shows improvement, undergoing tests that confirm the cancer is under control or even celebrating a birthday “because it’s important to them that they get to their next birthday,” she noted.

A staff member whose mother underwent treatment but passed away came back to ring the bell in honor of her parent, Frantz added.

At other clinics, the medical staff has decided to tone down the ritual.

“We realized this isn’t a celebration for everyone — so we are now purposeful and sensitive when we do this,” Bonita Ball, a nurse manager at a chemotherapy unit at Pennsylvania Hospital in Philadelphia, told Medscape Medical News.

O’Brien would like to see hospitals and clinics do more to acknowledge people who may never finish treatment. October 13 is National Metastatic Breast Cancer Awareness Day, for example — why not have a sign or display honoring those patients, she asked.

Dietrich, who is back at Ohio State University, is glad the differing viewpoints are being heard.

“People like me have the privilege to get to ring the bell… maybe [doctors] should look into doing something for patients who don’t get that privilege,” she said.

Follow A. Pawlowski on FacebookInstagram and Twitter.

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NEW YORK, Oct. 3, 2018 /PRNewswire/ — The MBC Alliance today announced the appointment of Shirley Mertz as the Chair and Christine Benjamin as the Vice Chair beginning November 1. The MBC Alliance is a coalition formed in 2013 by a dozen nonprofit patient advocacy and research organizations, MBC patients and pharmaceutical industry partners who joined together to transform and improve the lives of people living with metastatic breast cancer. Both Mertz and Benjamin are founding members and have been active members of the MBC Alliance. Mrs. Mertz has co-chaired the Alliance’s research task force the last four years, while Ms. Benjamin has co-chaired the information task force. Both serve on the MBC Alliance Executive Group.

Shirley Mertz

Shirley Mertz is the President of the MBC Network, a founding member of the MBC Alliance. Shirley received a diagnosis of metastatic breast cancer in 2003, twelve years after being treated for DCIS. After seeking training in the biology of breast cancer and political advocacy, she became a consumer reviewer for Susan G. Komen and the DOD Breast Cancer Research Program and advocate for national health care reform. Shirley will serve as Chair from November 2018 through October 2019.

“Under Dr. Marc Hurlbert’s leadership, the MBC Alliance has made great strides as a coalition. It completed a landscape analysis about MBC, answered key questions about the epidemiology of MBC, galvanized researchers into action, developed tools for patients to find clinical trials and raised awareness about how metastatic disease is different from early breast cancer,” stated Mertz. “I am honored to be elected Chair and will strive to shepherd the Alliance to continue to accelerate progress for people living with metastatic disease.”

Christine Benjamin

Christine Benjamin, LMSW, is the Breast Cancer Program Director at SHARE, a leading patient support organization helping those diagnosed with breast or ovarian cancer. Christine leads SHARE’s programming and training, with a particular focus on support services and education for women with metastatic disease, BRCA-gene-related cancers and triple-negative breast cancer. Christine will serve as Vice Chair through October 2019, and then assume the role of Chair for a term of one year.

“As a clinical social worker who has been treated for breast cancer, I actively work to build programs that meet the unique needs of women with advanced disease,” stated Benjamin. “I am honored to serve as Vice Chair and to advance Alliance impact in patient information, education and support, awareness and research.”

About the MBC Alliance
The Metastatic Breast Cancer Alliance (MBCA) is a consortium made up of representatives from 32 nonprofit organizations and 11 pharmaceutical/biotech companies, along with 18 individual patient advocates – many of whom are living with MBC. The mission of the MBCA is to improve the lives of, and outcomes for, those living with metastatic breast cancer and their families through increasing awareness and education about the disease and advancing policy and strategic coordination of research funding, specifically focused on metastasis, that has the potential to extend life, enhance quality of life and ultimately to cure.

Learn more about the MBC Alliance at www.mbcalliance.org. For people living with MBC, the Alliance website provides a comprehensive list of organizations, programs and support services focused on meeting the needs of people living with MBC.

***Coming soon – MBC Connect, an interactive patient registry by the MBC Alliance.

Learn more [here].  ***

CONTACT
Laurie Campbell, Executive Director | O: 646.239.7872 | laurie@mbcalliance.org  
Mr. Dana Mooney, Program Assistant | O: 646.497.3682 | dana@mbcalliance.org

SOURCE Metastatic Breast Cancer Alliance

Related Links

http://www.mbcalliance.org

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A national survey of more than 1,000 women with metastatic breast cancer led by University of North Carolina Lineberger Comprehensive Cancer Center researchers found that nearly one-third of women had no insurance, and many felt significant or catastrophic financial effects from cancer.

The study investigated the extent and severity of negative financial effects of cancer among women with breast cancer that has spread in the body. The preliminary results were presented at the American Society of Clinical Oncology’s Quality Care Symposium, held Sept. 28-29 in Phoenix.

“We need additional interventions within our health care system to try to prevent and mitigate financial toxicity, including trained financial navigators who can identify patients’ financial needs and help them determine eligibility for, and gain access to, assistance programs,” said UNC Lineberger’s Stephanie Wheeler, PhD, associate professor in the UNC Gillings School of Global Public Health.

For the study, researchers partnered with the Metastatic Breast Cancer Network to survey metastatic breast cancer patients, who were offered a $10 Amazon gift card to complete an online questionnaire about their background and their financial burden after treatment.

Of 1,054 study participants, nearly 70 percent reported being worried about financial problems as a result of cancer.  About one-third were uninsured. Uninsured women were more likely to report refusing or delaying treatment due to cost, skipping non-medical bills, stopping work after diagnosis, or being contacted by a collections agency. But insured women were more likely than uninsured women to report being financially stressed or worried, caught off-guard by their out-of-pocket expenses, and distressed by not knowing what their cancer care cost would be.

Stephanie Wheeler, PhD, and colleagues found that women with advanced breast cancer experience significant finanical hardships associated with having the disease.

“We were somewhat surprised to find that the uninsured/self-pay cancer patients who have the greatest material burden, in terms of inability to pay for medical and non-medical services, report lower overall distress and worry about their cancer costs relative to insured patients, although both groups report high levels of financial worry overall,” Wheeler said.

“This may reflect insured cancer patients being more caught off-guard by the high out-of-pocket cost of their cancer care if they expected that their insurance would more adequately cover expenses, when, ultimately, that was not the case,” Wheeler added. “It could also be true that insured patients, who tend to have higher socioeconomic status, have more assets to lose to cancer than do uninsured patients, leading to greater worry about one’s financial legacy and the effects of lost assets on the household.”

Either way, the results suggest that health insurance is an important, but insufficient, protective factor against financial toxicity and that strategies to proactively identify and monitor multiple aspects of financial risk are needed in order to intervene appropriately.

Wheeler said the extent and severity of financial problems after breast cancer reached unprecedented levels among women with metastatic disease.

“This is likely due to a few things that make metastatic patients unique:  greater financial vulnerability at baseline, given the association between low socioeconomic status and advanced stage diagnosis, complex and rapidly changing treatments, and the added psychological burden of living with advanced disease,” Wheeler said. “As such, providers should be especially attentive to the financial issues metastatic patients face and where possible, prioritize offering affordable and high-value treatments.”

In addition to Wheeler, other authors include Jennifer C. Spencer, MSPH; Michelle L. Manning, MPH; Cleo A. Samuel, PhD; Katherine Reeder-Hayes, MD, MSCR, MBA; Jean B. Sellers, RN, MSN; and Donald L. Rosenstein, MD.

Funding was provided by the National Comprehensive Cancer Network and Pfizer Independent Grants for Learning & Change. 

 Media Contact: Laura Oleniacz, 919-445-4219, laura_oleniacz@med.unc.edu

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MBCN’s President Shirley Mertz reflects on the history behind National Metastatic Breast Cancer Awareness Day and urges advocates to keep sharing their stories. 
As October begins, I think back to 2009 when there was great celebration within the Metastatic Breast Cancer Network and among patients across the United States as they learned that both the Senate and House of Representatives passed resolutions declaring October 13 as National Metastatic Breast Cancer Awareness Day. MBC patients finally would have ONE day of recognition in the month of October!
You can read the resolution here or listen to Representative DeLauro speak in the House about the resolution, or read an account of the nine MBC patients who traveled to Washington D.C. to personally speak to Congressional leaders to pass the resolution on MBCN’s “History of October 13th” page.
Sadly, of the nine patients only I and Judith Christensen are still living.
Why was the passage of the Resolution huge? Before 2009, Breast Cancer Awareness Month was almost exclusively devoted to prevention, screening, and the celebration of those who had survived early stage disease. Metastatic patients felt isolated and excluded from groups that were organized to help those with breast cancer. This feeling of isolation was the spark that resulted in the founding of the Metastatic Breast Cancer Network in 2004–the first organization solely devoted to the needs of patients with MBC.
So have things changed since 2009? I believe the MBC Community has made progress, although more needs to be done. Consider the following:
• Since 2009, new organizations, devoted solely to the needs of MBC patients, have been formed. They speak out, provide information and lobby the government for increased commitment to funding MBC research.
• In 2013, the MBC Alliance was founded. The Alliance is made up of 32 non-profit organizations, 17 individual patients and advocates, and 11 industry members who have committed to “transform and improve the lives of people living with MBC through advancing research, improving knowledge needed by patients and caregivers, and helping the public understand MBC.”
• The largest non-profit breast cancer organization in the U.S., Susan G. Komen, supports several MBC Patient Conferences across the U.S. to help inform, educate, and support patients. See the list of conferences coming up in October.
• Like MBCN, groups and individual patients raise funds to support research focused on MBC.
• An unexpected result of the October 13 Resolution is that MBC patients and organizations in other countries have used that day to bring attention to MBC and the needs of patients and caregivers.
As we begin the month of October 2018, I urge you to use your voice and story to further public awareness, press for more patient information and call for research focused on MBC so that the lives of 154,000 women and men currently living with MBC are not cut short. Here are 31 MBC facts you can share throughout October.
When you and I show courage to speak up, others will find the courage to join us. Let us support each other.
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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

My Auntie Kim lost her battle with Breast Cancer early Sunday morning. She was a warrior and wanted me to share this https://t.co/tb0cqRQzMA

— Chance The Rapper (@chancetherapper) May 9, 2017

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.

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“Oligometastatic” is hard to say but few words convey more hope to certain cancer patients, thanks to the pioneering efforts of the Dr. Ralph W. Weichselbaum, the 2018 recipient of ASCO’s 2018 David A. Karnofsky Memorial Award.

FEW METS COULD MEAN CURATIVE TREATMENT?

Weichselbaum’s acceptance speech, “Oligometastasis from Conception to Treatment,” will be published in the Journal of Clinical Oncology in the fall. In the interim, you can read Hanan Goldberg’s (@GoldbergHanan) excellent summary here.

Oligometastasis development photo courtesy of @GoldbergHanan

Oligometastasis describes patients who have only a few metastatic spots that are typically confined to one organ. Being oligometastatic means maybe, just maybe, you have a chance of being cured–provided you are treated aggressively and your cancer responds.

Reportedly there are more than 90,000 oligometastatic disease presentations in the four most common cancers in the US every year. This includes 10,000 prostate cancer patients, 14,000 breast cancer patients, 14,000 colorectal cancer patients and 50,000 lung cancer patients.

In 1999, Dr. Weichselbaum and his University of Chicago colleague, Samuel Hellman made the controversial suggestion that many patients with oligometastatic disease could be cured, depending on the extent of disease burden, with either surgery or targeted radiation therapy. As U of C’s John Easton reports, this notion, the spectrum theory of metastasis, has slowly been accepted, backed by a mounting series of reports of successful treatments.

OLIGOMETS TRIALS ARE ONGOING: MBCN IS SUPPORTING SOME OF THEM

Currently Dr. Weichselbaum’s colleagues, Dr. Steve Chmura at the University of Chicago and Dr. Joseph Salama at Duke are conducting oligometastatic breast cancer clinical trials.

The Metastatic Breast Cancer Network (MBCN) is proud to support Dr. Chmura’s work. (The accompanying picture from 2015 shows MBCN’s Shirley Mertz and me with U of C’s Drs. Nanda and Chmura). He is leading a national team of radiation oncologists in a national Phase II/III open trial that randomizes breast cancer patients with only 1-2 metastases, (“oligometastatic” breast cancer, to compare survival outcomes in standard of care therapy with or without stereotactic body radiotherapy (SBRT) and/or surgical ablation.

The Research Leadership Award from MBCN ensures that participating study sites can perform needed biomarker tests of study participants. Outcomes of the trial could impact how metastatic disease is treated in the future in a subset of patients. (Here is a copy of Dr. Chmura’s 2015 presentation: Chmura talk_10_27_15.)

SOME PATIENTS AND DOCTORS DON’T KNOW WHAT OLIGOMETS IS

Some newly diagnosed metastatic breast cancer patients are never told they are oligometastatic. In some cases, health care providers know the term, but they don’t realize there are clinical trials these oligometastatic patients could pursue–they have more options than most with the disease. Some of my fellow patient advocates are working hard to get the word out.

“Metastatic breast cancer treatment is systemic, and many medical oncologists shun local treatment of nonsymptomatic tumors in favor of chemotherapy, rather than considering both in cases of limited metastatic spread, especially in the age of targeted drug therapies,” patient advocate Joan Mancuso wrote in 2013 as part of her patient advocacy work with SHARE Breast and Ovarian Support. “But that’s starting to change.”

Indeed, here is a link to a proposed Australian oligometastatic breast cancer registry.

Another US advocate has organized an online support group and hopes eventually to work with others to create a US patient registry of oligometastatic breast cancer patients. After reading online news accounts of Dr. Weichelbaum’s 2018 ASCO accolades, this patient advocate decided to contact him.

DEAR RALPH…

“What the heck, nothing to lose, and I sent him an email,” she told her online friends. “He will probably never read it and never respond but hey you never know! Will keep you all posted…”

Seemingly moments later she was posting again: “Um, you guys, he responded!” Their correspondence continued. “We’ve exchanged a couple more emails….he’s really such a nice man.”

The advocate shared with Dr. Weichselbaum that she learned of his work several years ago, soon after her de novo diagnosis with a solitary bone met. She subsequently enrolled in atrial at MD Anderson with Dr. Eric Strom. After completing aggressive chemo she had IMRT/SBRT radiation and has been NED (No Evidence of Disease) for almost two years and counting.

My friend is realistic–her treatment came with no guarantees–she takes things day by day. But she’s determined to educate others.

“We want oncologists who are unfamiliar with the term oligometastasis to understand it,” she says. “We think we are a unique subset and perhaps should be treated differently than other metastatic breast cancer patients… And a huge THANK YOU to Dr. Weichselbaum and his colleagues for all the important work they have done on behalf of patients like us. It give us all such hope.”

GOT OLIGOMETS? LET’S GET IN TOUCH!

If you PM me, I will pass along your contact info to the oligomets advocates–or please comment below. We will be in touch! (I am not oligometastatic, I am just helping out.)

FINALLY…

Here is my favorite comment from an oligomets patient responding to Dr. Weichselbaum’s 2018 Karnofsky Award honors:

Well done Dr. Weichselbaum! The next round is on me!

Thank you and all of your colleagues for all you do! And thank you as well to patients like my friends who are participating in clinical trials and making a difference for ALL of us!

Editor’s Note:  “The 46th David A. Karnofsky Memorial Award Lecture: Oligometastasis—From Conception to Treatment” has now been published. Full access requires a subscription; here is the abstract:

Metastasis from most adult solid tumors generally has been considered to be widespread and incurable. Here, I present clinical and molecular data to support the hypothesis that some metastases are limited in number and pace and are curable with ablative therapies. I advance the hypothesis that immunotherapy combined with radiotherapy may be a general strategy to increase the number of patients with metastatic cancer amenable to cure. I further suggest that, in the context of ablative radiotherapy, the potential synergies between immunotherapy and radiotherapy are principally within the local tumor microenvironment and require treatment of all or most sites of metastatic disease. Improvements in the molecular staging of metastasis, immunotherapy strategies, and radiotherapy delivery are likely to improve outcomes for patients with metastatic cancer. –Dr. Ralph R.  Weichselbaum

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