Notes for Those Newly Diagnosed With Metastatic Breast Cancer

Learning you have metastatic breast cancer can unleash a tsunami of emotions. Fear, panic, anxiety and anger are just a smattering of common responses. How can you deal with these feelings?

 

 

 Living Beyond Breast Cancer (LBBC) and MBCN have worked together to produce a  Guide for the Newly Diagnosed. See http://www.lbbc.org/get-support/print/guides-to-understanding/metastatic-breast-cancer-series-guide-newly-diagnosed

 

Talk to your oncologist--he or she may prescribe Ativan or other anti anxiety medications. Many treatment centers also have counselors on staff who specialize in helping those dealing with a cancer diagnosis. Ask if your center has a support group for metastatic breast cancer patients. Your oncologist also may be able to connect you with someone dealing with a similar diagnosis. Oncologists–like all medical professionals–must respect privacy laws.

 

If your doctor can’t suggest a local contact, you can reach out to a peer matching program and/or metastatic breast cancer hotline.

 

Here are several to check out:
SHARE hotline and phone support groups: http://www.sharecancersupport.org/share-new/support/groups/#metastatic

Living Beyond Breast Cancer helpline and other resources: http://www.lbbc.org/node/1578

Young Survival Coalition SurvivorLink is here: https://www.youngsurvival.org/survivorlink

 

Support Connection provides emotional, social and educational support here: http://supportconnection.org/contact-us-for-support/

 

BreastCancer.org has excellent information as well as  a dedicated Stage IV discussion forum. Here you will find others with MBC  https://community.breastcancer.org/forum/8

 

BCMets was among the first online forums for people living  with metastatic breast cancer:https://www.bcmets.org

 

Inspire.com hosts an Advanced Breast Cancer board: https://www.inspire.com/groups/advanced-breast-cancer/

Most people are familiar with early-stage breast cancer. Just what is metastatic breast cancer? Here is a concise overview:

 http://www.uptodate.com/contents/treatment-of-metastatic-breast-cancer-beyond-the-basics

…and here: https://medium.com/@ihatebreastcanc/metastatic-breast-cancer-the-missing-manual-from-a-stage-iv-patient-f8420a5a817d#.spajn14ks

NCCN Guidelines for Stage IV breast cancer treatment can be found here: http://www.nccn.org/patients/guidelines/stage_iv_breast/files/assets/common/downloads/files/stage_IV_breast.pdf   ( This PDF was issued in 2014; several new drugs have come out in the interim.)

BreastCancer.org has a detailed guide on understanding your pathology report: http://www.breastcancer.org/Images/Pathology_Report_Bro_V14_FINAL_tcm8-333315.pdf

How do you find an oncologist? You can ask your primary care doctor for a referral. Also: consider working with an NCI designated cancer center. Here  is a list: http://www.cancer.gov/research/nci-role/cancer-centers/find

Receiving the NCI-designation places cancer centers among the top 4 percent of the approximately 1500 cancer centers in the United States. More here: https://en.wikipedia.org/wiki/NCI-designated_Cancer_Center

 

Finally, we urge both the newly diagnosed and “veteran” patients to watch

Dr. Don Dizon’s EXCELLENT presentation from MBCN’s 2013 national conference: https://www.youtube.com/watch?v=5RKCGEpk2po

Dr. Dizon’s PRO approach (Pragamatic, Realistic and Optimistic) resonates with patients. Hopefully after watching this video you will feel informed, uplifted and empowered!

MBCN Supports Metastatic Breast Cancer Researchers at University of Chicago With Leadership Awards

MBCN’s Shirley Mertz (left) and Katherine O’Brien (far right) with leadership award recipients Dr. Nanda and Dr. Chmura.

At a Metastatic Breast Cancer Forum held by the University of Chicago Medicine Comprehensive Cancer Center on October 27, 2015,  patients and caregivers heard from two University of Chicago clinicians, oncologist Dr. Rita Nanda and radiation oncologist Dr. Steven Chmura, who shared current and new approaches aimed at improving treatment outcomes for women who live with metastatic breast cancer, a currently incurable, but treatable form of breast cancer that ends the lives of 110 people every day and 40,000 lives annually in the United States.

At the conclusion of the presentations, Shirley Mertz, a metastatic breast cancer patient, and President of the Metastatic Breast Cancer Network (MBCN), an all-volunteer, non-profit, nationwide patient-led organization, noted that although metastatic breast cancer is responsible for virtually all breast cancer deaths, a recent analysis revealed that only seven percent of all government and privately funded grants from 2000-2013 focused on improving outcomes for those living with metastatic breast cancer. Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally. “We know research holds the key to changing those statistics,” said Mertz.

Mertz then announced that MBCN wants to support the ongoing research of Dr. Rita Nanda and Dr. Steven Chmura by presenting an  MBCN Research Leadership Award to each in the amount of $30,000. Mertz said that the awards are made possible from contributions sent to MBCN from individuals, families and work colleagues who want to honor or remember loved ones, colleagues, and friends with metastatic breast cancer.

Mertz noted that Dr. Nanda’s research has been directed toward the treatment of triple-negative metastatic breast cancer. She has sought to identify novel anti-tumor treatments, such as using the drug pembrolizumab, to activate the body’s immune system in these patients. Immunotherapy has been shown to improve patient outcomes in advanced lung cancer and advanced melanoma, and Dr. Nanda’s research advances knowledge about using immunotherapy in metastatic breast cancer. (Here’s Dr. Nanda’s triple negative presentation from MBCN’s 2012 national conference.)

Dr. Steven Chmura 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, called oligometastatic breast cancer, to compare survival outcomes in standard of care therapy with or without stereotactic body radiotherapy (SBRT) and/or surgical ablation. Mertz said the Research Leadership Award from MBCN insures 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 presentation: Chmura talk_10_27_15. For an overview of Dr. Chmura’s work, see this video from MBCN’s 2012 National Conference.)

ABOUT THE METASTATIC BREAST CANCER NETWORK

The Metastatic Breast Cancer Network, a national, not-for-profit organization, was founded in 2004 to raise awareness about the kind of breast cancer that is rarely discussed in the breast cancer support groups or the media—metastatic breast cancer. Unlike early stage breast cancer, in which cancer cells are confined to the breast, in metastatic breast cancer, cancer cells have traveled from the breast to other sites in the body. Led by patient advocates, MBCN has worked to offer education and information to patients and their caregivers through its website (mbcn.org); targeted brochures developed for the public and those newly diagnosed; and an annual conference for metastatic patients at major comprehensive cancer centers.

MBCN Year in Review – 2013

by Shirley Mertz, Metastatic Breast Cancer Network President

As we approach the end of the year, I want to report to you what MBCN has accomplished in 2013– with your help and support.

We created a new logo this year to better reflect our mission—educating, empowering and advocating.   

Here are the major activities of 2013  and how they supported our mission:

EDUCATING AND BUILDING AWARENESS

Dr Don Dizon answering a question during his talk on Living with MBC

•  Our 7^th annual national metastatic breast cancer conference in cooperation with experts at MD Anderson in Houston, Texas.  Over 225 patients and caregivers attended the September 20-22 event.  All the presentations were recorded and are on our website.

•MBCN partnered with Living Beyond Breast Cancer to develop and write an expanded booklet called, “Guide for the Newly Diagnosed Patient.”  It can be ordered for free or downloaded on our website.  We urge members to take copies to their oncologist’s office so patients can benefit from it.

•MBCN expanded the amount and kind of information on our website (mbcn.org).  There patients can find our national conferences’ recordings; info about clinical trials, pain and supportive services; financial resources,  inspirational stories from those living with our disease; and advocacy strategies.

•Our new T-Shirt was popular and part of our October 13 MBC Awareness Day campaign.

•Our short videos were also well received, especially during October.

How do you LIVE with metastatic breast cancer?

Use Your Voice

Dumb things people say about metastatic breast cancer

Celebrating caregivers

 

•Each day in October we posted a Fact a Day on Facebook for you to share with friends and spread education and awareness of living with metastatic disease. See the 31 Days of October.

• At the San Antonio Breast Cancer Symposium (SABCS), MBCN was part of a panel that explained clinical trials to other patient advocates and the challenges facing metastatic patients to decide and participate in clinical trials.

•MBCN partnered with Novartis to develop and edit an online magazine for caregivers of metastatic breast cancer patients.

EMPOWERING

 •At our annual conference, a special session on how to advocate on behalf of the metastatic community was developed and presented to attendees.  An “Advocacy Kit,” complete with instructions and tools, is on our website for any patient, family member or supporter to use.

•MBCN has guided, informed and empowered several patients and/or their supporters who want to host an educational and/or fundraising event in their community or local hospital.  See our fundraising section on the website.  MBCN provides free materials for these events.

•MBCN encouraged its members to participate in quality surveys that sought to identify challenges and concerns of patients.

•MBCN provided opportunities for our members to speak out in videos and focus groups, such as these:

Living the reality of metastatic breast cancer

 

Living with metastatic breast cancer – MBC Alliance video

ADVOCATING

• Based on a vision by MBCN, the Metastatic Breast Cancer Alliance was formally announced to the public this year during our Metastatic Breast Cancer Awareness Day campaign.  The MBC Alliance consists of 16 breast cancer organizations who have joined together, driven by a vision to transform and improve the lives of women and men living with metastatic breast cancer.  See my remarks at our first face-to-face meeting.

 •MBCN partnered with SHARE to develop and participate in a webinar for experienced and new oncologists entitled, “Communicating Hope and Trust:  The Patients’ Point of View.”

•MBCN has a seat on the Board of Directors of the National Breast Cancer Coalition.  We advocate on behalf of Breast Cancer Deadline 2020 to find the causes of metastasis and participate in strategic planning and implementation of that goal.

•MBCN served on the Global Advocate Planning Committee to organize and plan sessions for global advocates at the Advanced Breast Cancer 2 Global Conference in Lisbon where doctors discuss and decide on treatment guidelines for the disease.  The advocates discussed common global challenges facing patients with metastatic disease. MBCN reported on the findings of a US survey of metastatic breast cancer patients that asked patients about quality of life issues.

Those are the highlights of 2013 and we are planning an ambitious year for 2014!

If you have questions for us, or ideas you want to share, please leave your comments below or contact me directly at s.mertz@mbcn.org.

Sincerely,

Shirley Mertz

President, Metastatic Breast Cancer Network