2016 LBBC Conference: Individual Treatments, Shared Experiences

Information you can trust

2016 LBBC Conference. Johanna Austin, AustinArt

As one of the 450 attendees at the 2016 Living Beyond Breast Cancer (LBBC) Conference, recently held in Philadelphia, I was pleased to be part of a well thought out event that had up to date information on research, treatment, and resources for anyone who has experienced breast cancer.

The LBBC Conference began on Friday evening the 23rd ​of September with two events designed to facilitate attendees coming together and socializing prior to the full day of information sessions on Saturday, which were held at the Pennsylvania Convention Center in downtown Philadelphia.

Saturday began with a continental breakfast and the first opportunity of the day to meet other attendees and socialize.

The keynote address, "Healthy Eating for Everyday Life," followed breakfast and included two presentations:

  • "Why Nutrition Matters," by Pallav K. Mehta, MD
  • "You Can Do It: Removing the Roadblocks to Healthy Eating," by Dr.Ro, America’s Nutrition Coach

The long hall, just outside the individual session rooms, was the perfect setting for the exhibitor tables to be situated. There were 40+ exhibitors representing organizations for breast cancer patients, pharmaceutical companies that manufacture breast cancer medications, and companies that have products such as cosmetics, breast prostheses, and compression sleeves. Exhibitor tables were staffed throughout the day to explain the work their organization or company does, to answer questions, and distribute information.

Breaks in the agenda allowed for visiting with exhibitors, refreshments, and mutual sharing of breast cancer experiences with others.

Lunch was another opportunity for sharing with table mates, and  discussing the morning sessions.

Attending a breast cancer conference, such as the LBBC conference, is important because it can give you access to the most up to date information about breast cancer presented by specialists in their respective fields.

Sessions usually have a generous question and answer period following the presentations, during which you can get answers to questions you have and learn from the questions asked by others.

Attending a breast cancer conference is a good way to come together with large numbers of survivors, share experiences, and give each other the understanding, support, and hope that only fellow survivors can provide. Most survivors can identify with the experiences inherent in a breast cancer diagnosis, such as treatments and side effects. Sharing with others who can relate helps to reduce the feelings of isolation that many feel in coping with the impact that breast cancer continues to have on their lives. This is especially true for those diagnosed with less common breast cancers, such as inflammatory breast cancer, and triple negative breast cancer who do not often meet others with their type of breast cancer.

Since breast cancer is not just a physical disease, it can affect many different aspects of life, not only during active treatment, but when treatment is over and it is time to get on with life.

No one can appreciate that better than another survivor.

Breast cancer is not one disease; there cannot be a one size fits all approach to care.

The LBBC conference gave attendees access to sessions led by specialists who shared the latest research findings, individual treatment options, and addressed quality of life concerns during treatment and as a survivor. Not only were their presentations interesting, they used visuals and terminology that were audience-friendly.

Session Topics

Audio recordings and presentations from selected sessions on the topics, listed below, will be available soon at LBBC.ORG.

  1. "A Medical Update Just for You: Hormone Receptor Positive & HER2 Positive Breast Cancer," by Jennifer L. Armstrong, MD, Paoli Hematology/OncologyAssociates
  2. "A Medical Update Just for You: Triple-Negative Breast Cancer," by Melinda Telli, MD, Stamford University School of Medicine
  3. "A Medical Update Just for You: Metastatic Breast Cancer," by Elizabeth Comen, MD, Medical Oncologist, Memorial Sloan Kettering Cancer Center
  4. "Genetic Testing Today: What Genes Can Tell Us," by Kara N. Maxwell, MD, PhD, Instructor of Medicine, the University of Pennsylvania
  5. "Making Decisions About Hormonal Therapies As a Young Woman: Side Effects, Cost and Treatment Decisions," by Marisa Gefen, MD, Medical Director, CityLife Neighborhood Clinics, and Lori B. Ranallo, MSN, ARNP, Breast Oncology Nurse Practitioner, University of Kansas Cancer Center
  6. "Taking Care of You: Self Care for Caregivers," by Gregory D. Garber, MSW, LCSW, Dir. Oncology Support Services, Sidney Kimmel Cancer Center at Thomas Jefferson University
  7. "Survivorship: Living Your Best Life," by Jacci Thompson-Dodd, MA, MSSS, LASW, OSW-C, Founder & CEO WeSpeakLoudly, LLC
  8. "Metastatic Triple-Negative Breast Cancer: An in the Round Discussion," Melinda Telli, MD, Stamford University School of Medicine 
  9. "Let’s Talk: Living with Triple-Negative Breast Cancer," by Allison Nilsen, MSW, LCSW, Medical Social Worker,Celtic Healthcare
  10. "A Panel Perspective: Breast Reconstruction," by R. Brannon Claytor, MD, FACS, Plastic Surgeon, Claytor/Noone Plastic Surgery Institute, William L. Scarlett, DO, ACS, ACOS, FAACS, Plastic and Reconstructive Surgeon, Bucks County Aesthetic Center, Panelists: Charmaine Chan, DO, Helen Cooke and Jackie Roth
  11. "Everyday Money: Breast Cancer’s Impact on Your Finances," by Joanna L Fawzy Moralez, ESQ., CEO Triage Cancer
  12. "Survivorship: Managing Long-term Physical Side Effects," by Lori B. Ranallo, MSN, ARNP, Breast Oncology Nurse Practitioner, University of Kansas Cancer Center
  13. "Managing Emotions with Mindfulness Meditation," by Caroline Peterson, ATR-BC, LCP, Director, Sprimgboard Studio, Supportive Care, Team, Abramson Cancer Center at  Pennsylvania Hospital, Penn Medicine
  14. "From the Lab to the Clinic: What You Need to Know About FDA Approval," Joe Reynolds, PhD, Clinical Science and Drug Development, Merrimack, Nickolas K. Tonks, PhD, FRS, Cold Spring Harbor Laboratory

 

Saturday closed with a keynote and a question and answer session, Inside Out: Building Better Body Image, which was presented by Sabitha Pillai-Friedman, PhD, LCSW, CST. It was followed by an end of the day reception and another opportunity to speak with fellow survivors, presenters, and exhibitors.

Sunday, the third day of the conference, began with a continental breakfast followed by the closing keynote, "Building and Restoring Physical Fitness After Breast Cancer," by Joni Miller, PT, DPT, CLT and Brianna Obert, MSPT,CLT,RYT.

For those who enjoy yoga, a one-hour group class followed the Keynote. The closing reception followed. Many of the attendees, who came together as strangers, now planned to stay in touch with each other after they returned home. 

The Living Beyond Breast Cancer History and Mission

LBBC literature states that, “In 1991, limited resources existed for women who had completed primary treatment for breast cancer. To address this, an organization was created. Living Beyond Breast Cancer (LBBC) is a national, nonprofit organization headquartered in Philadelphia, where women affected by breast cancer, can connect with each other to share accurate and easy-to-understand information in a supportive and caring environment. Since that time, LBBC has grown into the country’s most reliable organization that addresses the needs of all individuals who have been diagnosed with any stage of breast cancer.

LBBC’s mission is to connect people with trusted breast cancer information and a community of support. Each year they connect with 500,000+ persons from the newly diagnosed, to those in treatment, those living with metastatic breast cancer as well as women and men with a history of breast cancer.

Living Beyond Breast Cancer works with the world’s top medical experts to continuously survey the changing landscape of breast cancer treatment and care. The information learned from this interaction informs new and existing resources to help people navigate the course of their disease.”

A Word From Verywell

The conference drew survivors from a number of nearby states and as far away as Washington State. It was good to meet and speak with male breast cancer survivors. In addition to session content that would be of interest to most attendees, there were sessions that addressed the special concerns of those diagnosed with triple negative breast cancer, and women and men living with metastatic breast cancer.

I spoke to many women and some of the men during at the convention. Most were survivors, some were caregivers of survivors. All shared that they were glad they came because of what they were learning and for the opportunity of speaking with so many others that have been affected by breast cancer.

LBBC holds 2 conferences each year:

  • Breast Cancer Today: Individual Treatments, Shared Experiences for all types and stages of breast cancer
  • Thriving Together: Conference on Metastatic Breast Cancer

LBBC web pages carry information on their many events, education programs, and support services provided throughout the year. Help is available in person, online, by phone, and in their extensive literature covering all aspects of breast cancer from diagnosis to life as a survivor.

Even after all the years since my first and second breast cancers, I was pleased to be part of a group of people who were eager to share how they were adapting to life, as breast cancer survivors, and the changes that come with their new lives.

One of my lunch table mates described what the conference meant to her, saying, “I’m in chemotherapy and not feeling great. I really questioned coming today, but I am so glad I did. The sessions are giving me the information I need to feel secure in being a partner in my own care. Meeting and speaking with so many women who are further along than me is boosting my confidence about making it through treatment and adjusting to all the changes that breast cancer continues to bring into my life.”

If you have been diagnosed with breast cancer, visit  http://www.lbbc.org/. You will find  programs that are a fit for your needs, whatever your type and stage of breast cancer. The  information available on the site itself, in the LBBC free literature, and the webinars will enhance your understanding of your breast cancer and increase your comfort level when asking  questions of your care team. You will find the support you need through a phone helpline, and/ or Internet support groups and in-person groups.

Source:

Living Beyond Breast Cancer Conference, Pennsylvania Convention Center, September 24, 2016

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