Young Women’s Breast Cancer Program

Young Women’s Breast Cancer Program

Overview

YWBCP_logo_green

The Young Women’s Breast Cancer Program (YWBCP) was founded in 2001 by dedicated staff at the Siteman Cancer Center and Washington University School of Medicine in St. Louis. Since that time, the program has been serving young women with breast cancer, young survivors and their families by:

  • Providing support, education and community.
  • Advocating for young women through diagnosis, treatment and survivorship.
  • Advancing research focused on early onset breast cancer.
  • Creating written materials for young women with breast cancer and young survivors .

We invite all young women with breast cancer and young survivors to attend our programs, which include:

  • Monthly support groups and activities.
  • Peer support network.
  • Annual symposium.

The YWBCP is a proud member of Critical Mass.

Support, Education and Community Programs

The Young Women’s Breast Cancer Program (YWBCP) provides programs for young women with breast cancer, young survivors and their families. All programs are free to young women diagnosed with breast cancer. Find programs on our monthly calendar or e-newsletter. Contact us today to receive our e-newsletter. Please note: We do not allow students to observe our group meetings.

Young Women’s Monthly Support Group

This is a monthly support and education group. At some meetings, professionals and group members lead discussions on relevant medical, psychological and family topics. At others, group members share their experiences and offer support to each other. This group provides an ongoing opportunity to network and share with other young survivors.

Unless otherwise indicated, this group meets monthly from 6:30 to 8:30 p.m. at the Washington University West Campus Conference Center, 7425 Forsyth Ave., Clayton, MO 63105. Meeting dates vary. Check our calendar of events or e-newsletter for details about meetings.

Young Women’s Survivorship Group

This group offers healthy living activities and and education to young women recently diagnosed, in active treatment or post-treatment. Meeting time and place vary. Check our calendar of events or e-newsletter for details about meetings.

Psychosocial Support Groups

Time-limited, closed support groups for young women with metastatic breast cancer, caregivers or partners of young women with breast cancer and young women recently diagnosed. The group for young women with metastatic breast cancer is currently meeting but not accepting new members at this time. Contact us for information about upcoming caregiver and newly diagnosed groups.

Young Women’s Peer Support Network

Young survivors provide one-on-one support to young women recently diagnosed with breast cancer and those who have experienced a recurrence. Support is offered throughout the treatment period, if desired. Contact us if you wish to be paired with a mentor or if you would like to serve as a mentor. Women must live in the greater St. Louis region to participate in this program.

Young Women’s Breast Cancer Symposium

The YWBCP hosts a yearly symposium for young women with breast cancer and young survivors. Diverse topics are covered throughout the day in plenary and break-out sessions. Some topics presented at previous symposiums include: medical and psychological survivorship; caring for children during and after treatment; sexuality and intimacy; pregnancy during and after treatment; breast cancer genetics; single women united; healthy living and exercise; living with metastatic disease; belly dancing; yoga; and spirituality during the healing process. Contact us to receive an invitation.

Young Women’s Breast Cancer Facebook Page and Group

If you have a Facebook account and would like to follow the YWBCP, click here to access our page. The YWBCP also has a closed Facebook group. If you’d like to join, make a request on Facebook or contact us.

 

Young Women's Breast Cancer Research Program

We Need Your Help for a Young Women’s Breast Cancer Research Study

Women who were diagnosed with invasive breast cancer at 40 years of age or younger are invited to participate in a research study. The goal of the study is to identify genetic factors that distinguish breast cancer in young women. Women who have had clinical genetic testing may participate, regardless of the results.

Research Update – Identification of novel genetic factors that contribute to risk for breast cancer

Watch a Video That Describes This Research Project

Study Title

Identification of Novel Genetic Risk Factors that Contribute to the Risk for Breast Cancer

Eligibility

All women diagnosed with invasive breast cancer at 40 years of age or younger are eligible to participate. The age at diagnosis – not your current age – is used to determine eligibility.


You Will Be Asked to:

  1. Sign a consent form.
  2. Submit a sample of blood (obtained by your physician at a follow-up appointment).
  3. Release a copy of your cancer-related records.
  4. Allow us to contact you about your family history.

If your parents or sisters are living, we would like to invite them to participate as controls, regardless of whether they have been diagnosed with cancer.

Your Parents or Sisters Will Be Asked to:

  1. Sign a consent form.
  2. Submit a sample of blood and release any cancer-related records.

Important Information About the Study
  • You do not have to live in St. Louis to participate. Young women, their parents and sisters from all 50 states have participated.
  • You may still participate even if your parents or sisters are unable or choose not to participate.
  • There is no cost to you or your parents or sisters to participate. We pay for any phlebotomy (blood draw) charges and provide all of the prepaid shipping materials.
  • All study-related materials are kept strictly confidential.
Voluntary Participation

The research study is completely voluntary. Your medical team will not alter your medical care or follow-up based on your decision to participate.

Want to Participate?

If you want to participate, we need you to provide the following information:

  • Name
  • Age at diagnosis
  • Mailing address
  • Home phone number
  • E-mail address
  • Date of birth

We will mail you a study kit with all the supplies needed for your participation. The next time you have an appointment, your doctor may draw your blood and ship it to us using the blood tubes and prepaid Federal Express material we provide.

Contact Jennifer Ivanovich if you have any questions about our study.

Study Team
  • Paul Goodfellow, PhD, principal investigator
  • Jennifer Ivanovich, MS, co-investigator
  • Jennifer Staed, MAT, young survivor advocate

 

Calendar of Events

Monthly Meeting, March 16
6-7:45 p.m.
Washington University Campus Conference Center
7425 Forsyth Ave., Clayton MO 63105

(Park just beyond the “guard gate.” The meeting room is accessed by walking DOWN the stairs outside. If you are riding metrolink that day, exit on the Forsyth Ave station on the blue Shrewsbury line. Call Jen Ivanovich at 314-454-5076 with any questions or directions to our regular meeting location.)

Jeanne Carbone, a Therapeutic Horticulture Instructor from our world renowned Missouri Botanical Gardens, will lead us in a nature journaling project. Learn how to journal your cancer experience through observation of the natural world. Do you find joyfulness strolling on the beach, walking a mountain trail, or viewing the nightly stars? Do these quiet moments bring new insight into your life experiences? Many women journal as a means of self-expression and mindful reflection. Join us on March 16 to learn a new take on the journaling process.

Young Survivor Exercise Program
7 p.m. Tuesdays and Thursdays
The Heights
8001 Dale Ave.
Richmond Heights, MO 63117

Have you ever attended an exercise class where the instructor smiles the entire class? We have been blessed with three amazing fitness instructors. Sherri provides a supportive and lively exercise class keeping with the values of our community. The exercise group is open
to ALL YOUNG CANCER SURVIVORS and their
exercise supporters.
  
Has it been some time since you exercised on a regular basis? Our exercise program welcomes everyone no matter your fitness level.  The FREE exercise class offers a variety of cardio and strength exercises including yoga and zumba. Class meets every.

The exercise group is open to ALL YOUNG CANCER SURVIVORS and their exercise supporters. The FREE exercise class offers a variety of cardio and strength exercises including yoga and zumba.

New to the exercise group? Contact Jen Ivanovich at ivanovichj@wudosis.wustl.edu to register and to be added to a separate exercise group email distribution list. We use this email list to update exercise group members about changes in the schedule, cancellations, and to distribute our monthly exercise encouragement/challenge.

National Programs

Cancer and Careers Midwest Conference
The Third annual Midwest Conference on Work & Cancer, which will be held Friday, April 8, 2016, in Chicago. This free daylong event, which explores the complexities of balancing treatment and recovery with employment, is open to cancer survivors, caregivers, healthcare professionals and anyone else touched by cancer.
The meeting will take place at the Hotel Chicago Downtown, 333 North Dearborn, Chicago, IL 60654. Register here.

Stupid Cancer CancerCon 2016
April 28-May 1; Denver Colorado
CancerCon is the premier oncology conference and social networking event for the young adult cancer movement. The largest gathering of its kind, CancerCon brings together hundreds of survivors, caregivers and advocates to connect, get educated, build community and unite to drive the change we wish to see.
Click here to learn more and register!

Young Survivor Coalition Council of Advisors
YSC has just launched their new Council of Advisors. This inter-disciplinary group of volunteers will provide their expertise to help strengthen the delivery of our vital mission to ensure no young woman faces breast cancer alone.
Each Council member will join a workgroup in the one following six focus areas:

  1. Patient Education
  2. Research/Research Advocacy
  3. Supportive Services
  4. Legislative Advocacy
  5. Co-Survivors
  6. Diversity and Inclusion

Learn more about the Council of Advisors on the YSC website. Apply to become a Council member and/or nominate those you believe will be an asset to this work. We will contact each nominee to request the completion of an online application.  

Young Survivor Education Materials

The Young Women’s Breast Cancer Program (YWBCP) develops and distributes educational materials to young women and their families. Contact us for free copies of our materials. PDF files are available to download for some publications. All materials are copyrighted by the Young Women’s Breast Cancer Program at Washington University School of Medicine.

  1. YWBCP
    The program’s annual magazine, Together, provides current and relevant information and survivor stories to young women with breast cancer.

First edition: April 2006
Second edition: April 2007
Third edition: April 2008
Fourth edition: February 2010
Seventh edition: April 2014

  1. Young Adult Cancer Resource Guide
    A printable list of resources for cancer patients and their families.
  2. Family History Form
    This document contains a blank form for you to complete your family history and a table to document your family members’ names and medical conditions.
  3. The Woman is Stronger Than the Disease: A Guidance Journal for Young Women With Breast Cancer 
    Young women and their families share their experiences, insight and recommendations as they proceed through and beyond treatment. Last updated in 2011.
  4. Jewish Health: The St. Louis Jewish Community Source for Health News About Breast Cancer 
    Information regarding the connection between family history and breast cancer risk is reviewed. Updated news about hereditary breast cancer for Jewish families is also outlined. Published in 2004.
  5. My Breast Health Scrapbook: A Scrapbook for African-American Women 
    This booklet provides information about the connection between family history and breast cancer risk and encourages women to undergo breast health screening. Published in 2004.
Other Resources

Army of Women
Recruits women of every age and ethnicity to participate in breast cancer research.

Cancer Care
Provides support, education and financial assistance to cancer patients, survivors and their families. Free teleconferences are offered. Details are available on the organization’s website.

Cancer Legal Resource Center
Provides free legal information and support to individuals with cancer. Free teleconferences and webinars are offered. Details are available on the center’s website.

Fertile Hope
Provides reproductive information, support and hope to cancer patients and survivors.

FORCE
Provides support, education and advocacy specific to hereditary breast and ovarian cancer.

Hope for Young Adults with Cancer (Hope4YAWC)
Provides financial support to young adults battling cancer and “meet-ups” where young adults with cancer can connect in fun, stress-free settings.

LIVESTRONG
Provides support, education and resources to cancer patients, survivors, their families and the organizations that support them.

Metastatic Breast Cancer Network
Provides support to women and men with metastatic breast cancer.

National Cancer Institute
Provides information for adolescents and young adults with cancer.

The Pink Fund
Provides financial aid to women and men diagnosed with breast cancer.

The SAMFund
Assists young adult cancer survivors as they transition into their post-treatment lives. Offers grants and scholarships.

Critical Mass: The Young Adult Cancer Alliance
Provides resources for adolescents and young adults with cancer.

Young Survival Coalition
Provides education and support to young women with breast cancer and young survivors. Affiliates located in Missouir and Illinois.

3 Little Birds 4 Life
Grants wishes to young adults with cancer.

Centers for Disease Control and Prevention – Breast Cancer in Young Women

Centers for Disease Control and Prevention
In 2011, the Centers for Disease Control and Prevention awarded funding to seven organizations, including the YWBCP, to develop support, education and awareness programs for young breast cancer survivors. The following programs received funding:

  • John C. Lincoln Health Foundation, Young Breast Cancer Survivor Support Initiative
  • Living Beyond Breast Cancer
  • Louisiana State University Health Sciences Center School of Public Health and Mary Bird Perkins Cancer Center
  • Sharsheret
  • University of California, Los Angeles, Young Breast Cancer Survivorship Program
  • University of North Carolina Medical School
  • Young Women’s Breast Cancer Program (YWBCP)

 

YWBCP Videos

Welcome to Our Video Series for Young Adults with Cancer Give Us Your Feeback
A cancer diagnosis is difficult on many levels, especially for young adults. We want to help you gather helpful, practical information. Watch this video series to learn more.

Not All Gene Changes Are the Same: Variants of Unknown Clinical Significance
Not all genetic test results are the same. Variants of unknown clinical significance (VUS) can be confusing, even to health care providers. In some cases, these results are misinterpreted as mutations. Khateriaa Pyrtel, MS, a board certified genetic counselor reviews information about VUS and how this information cannot be used in planning your medical care.

Updated Testing for the BRCA1 and BRCA2 Genes
Genetic testing has advanced rapidly over the years. If you have had BRCA1 and BRCA2 gene testing prior to 2012, this video is for you. Khateriaa Pyrtel, MS, leads a discussion about recent updates in genetic testing especially as it pertains to BRCA1 and BRCA2 gene testing.

Discussing Information About Your Family’s Cancer Risk with Your Children
Discussing medical information with your children can be difficult. How do you approach the conversation and what do you say? Dr. Amanda Kracen, a licensed clinical psychologist offers suggestions and advice regarding how to approach discussing your family cancer risk information with your children.

Finding Resources for Cancer Survivors and Caregivers
There are many organizations dedicated to helping people diagnosed with cancer. We have compiled a list of local and national resources available to help address a wide variety of needs that may arise following a cancer diagnosis. Kim Selig, MSW, reviews some of these resources and how to access our Cancer Survivor Resource Guide.

The Importance of Knowing Your Family Cancer History
Do you know your family history? Have your shared this information with your physician and children? Jen Ivanovich, MS, a board certified genetic counselor, discusses the importance of knowing your family cancer history and how to easily document your history.  A tool to document your family history is found on our website.

How to Document Your Family Cancer History
Jen Ivanovich, MS, a board certified genetic counselor, discusses how to document your family cancer history.

Cancer Genetic Counseling: Who May Benefit from Assessment and What to Expect
Genetic counseling is a specialized assessment of your family based risk. This assessment is different from other medical assessment because it considers not only your medical care but the follow-up of your children and extended family members. Dan Gallo, MS a board certified genetic counselor discusses the process of genetic counseling and what important pieces of information you can gave from the assessment.

What Can We Learn (And Not Learn) From Cancer Genetic Testing
More and more people who are diagnosed with cancer are using genetic testing to help guide their medical care. Learn about what can and cannot be learned from genetic testing and who should be the first person in your family to be tested. Jen Ivanovich, MS, discusses important considerations before proceeding with genetic testing for cancer risk.

Young Survivor Exercise Program Overview
The Young Women’s Breast Cancer Program is partnering with the Heights community center to offer a weekly exercise program for all young adults with cancer. The class is held each week on Thursdays. Joy Jones, a certified personal trainer leads the program. Registration is required. Register at 314-747-7156 or ywbcp@wudosis.wustl.edu.

The Young Women’sYoung Breast Cancer Survivor’s Symposium 2013 Part 1
Monica Fawzy Bryant, JD, Chief Operating Officer of Triage Cancer, speaks about health care reform and its impact on young adult cancer survivors. In her presentation, “Healthcare Reform and How It May Impact You,” Ms. Bryant  addresses health insurance options for young women with breast cancer, how the 2010 Patient Protection and Affordable Care Act (ACA) changes our current system, new insurance marketplace and options, and consumer protections.

The Young Women’s Breast Cancer Survivor’s Symposium 2013 Part 2
The second presentation, “Post-Treatment Surveillance: What’s Recommended for Women Who’ve Completed Breast Cancer Treatment,” is from Amy Cyr, MD, Breast Surgeon and Faculty at Washington University School of Medicine. Dr. Cyr provides information on current post-treatment screening recommendations, what you should expect when you’ve completed treatment, and addresses follow-up tests, visits and imaging.

November 2012 Support Group
Presentation on Complementary Health Practices by Dr. Sharon Fitelson, founder and director of InMotion Health Center.

Young Woman: Breast Cancer Battle Continues After Treatment
Music therapist Julie Lindemuth discusses the difficulties she experienced while battling breast cancer at the age of 41. Her diagnosis and treatment came during a transition time for her and her husband.

Young Woman Survives Breast Cancer, Discusses Fertility and Reconstruction
Catherine Determan was just 34 years old when she was diagnosed with breast cancer. She was treated at Siteman by a multidisciplinary team of physicians and participates in Siteman’s Young Women’s Breast Cancer Program.

Goodfellow Discusses Research Program
Siteman Cancer Center geneticist Paul Goodfellow, PhD, discusses the genetic research component of Siteman Cancer Center’s Young Women’s Breast Cancer Program.

Breast Cancer Survivor Discovers “Family of Women” at Annual Symposium
Tamiko Smith found support and “overwhelming love” by participating in the Young Women’s Breast Cancer Symposium presented each year by Siteman Cancer Center’s Young Women’s Breast Cancer Program.

How a Young Mother Coped With Breast Cancer Diagnosis and Treatment
Brenda Plocher of Highland, Ill., was a 37-year-old mother of two when she was diagnosed with breast cancer. Two years later, she reflects on how she explained the disease and treatment to her then 7- and 9-year-old daughters.

News for Young Women

Reasearch Update

National Cancer Institute Funded Study: Communication Preferences for Genome Sequencing Results in Breast Cancer Patients
By Kim Kaphingst, ScD

From Our Magazine

Metastatic Breast Cancer: Best Practices Based on Cancer Subtype
By Cynthia Ma, MD, PhD
Associate Professor of Medicine
Washington University School of Medicine
Released: April 2014

Cancer Genome Research Studies: An Evolving Story
By Jennifer Ivanovich, MS
Genetic Counselor
Washington University School of Medicine
Released: February 2013

Know Your Options: A Guide to Breast Reconstruction
By Terence Myckatyn, MD
Plastic and Reconstructive Surgeon
Washington University School of Medicine
Released: February 2013

No Rules: Lymphedema and the Young Woman at Risk
By Sarah Stolker, MSPT
Certified Lymphedema Therapist
Lymphedema Association of North America
Released: February 2012

Genetics and Genomics: A Look at the Present and Not-So-Distant Future
By Kimberly Kaphingst, PhD
Assistant Professor of Public Health Sciences
Washington University
Released: February 2012

Bone Health in Young Women Diagnosed With Breast Cancer
By Antonella Rastelli, MD
Professor of Internal Medicine
Washington University
Released: February 2010

New Genetic Tests Provide Answers for More Women
By Jennifer Ivanovich, MS
Genetic Counselor
Washington University
Released: February 2010

Use of PARP Inhibitors in the Targeted Treatment of Cancer
By Paul Goodfellow, PhD
Professor of Surgery
Washington Unviersity
Released: February 2010

Journal Article Summaries

Click here to read summaries of research relevant to young women with breast cancer that has been published in scientific journals.

Bulletin Board

YWBCP Peer Support Network

If you’ve been diagnosed in the past year, and would like to talk with a woman who was also diagnosed at a young age and has completed treatment, contact Kim at 314-747-7156 or ywbcp@wudosis.wustl.edu. This network offers the unique opportunity to talk with someone who understands. There’s no reason too big or small to reach out for support – we’re here to help!

The National Comprehensive Cancer Network Announces AYA Guidelines

NCCN announces the availability of NCCN Guidelines for Patients®: Caring for Adolescents and Young Adults, a patient-friendly translation of the NCCN Guidelines® focused on people diagnosed with cancer between the ages of 15 and 39. Visit www.nccn.org for more information.

The Love/Avon Army of Women – Sign up for open research studies!

The Love/Avon Army of Women is recruiting 1 million women nationwide to researchers learn about causes, cure, and prevention of breast cancer. Women of all ages and ethnicities are encouraged to visit www.armyofwomen.org to learn more and sign up.

Urge your senators to support “The Accelerating the End of Breast Cancer Act (HR 1830, S 865)”

The National Breast Cancer Coalition has launched its “Deadline 2020” initiative, a call to action to end breast cancer by January 1, 2020. As part of this initiative, NBCC and SLBCC, our local affiliate, are urging you to support “The Accelerating the End of Breast Cancer Act,” which would focus existing research funding in the areas of primary breast cancer prevention and metastatic disease.

Visit www.breastcancerdeadline2020.org to sign the petition in support of this act, and contact Senators Claire McCaskill 202-224-6154 and Roy Blunt 202-224-5721 to ask for their support.

 

Our Team

Support and Education Program

Jennifer Ivanovich, MS
Director
314-454-5076
314-454-8051 (fax)
ivanovichj@wudosis.wustl.edu

Keri Walton
314-747-7156
314-454-8051 (fax)
walton@wustl.edu

Research Program

Paul Goodfellow, PhD
314-362-2032
314-362-8620 (fax)
goodfellowp@wudosis.wustl.edu

Jennifer Ivanovich, MS
Research Assistant Professor, Genetic Counselor
Department of Surgery
314-454-5076
314-454-8051 (fax)
ivanovichj1@wudosis.wustl.edu

Robert Pilarski, MS, MSW
Associate Professor, Genetic Counselor
Ohio State University

Jennifer Staed, MAT
Young Survivor Advocate

Mailing address:

Washington University School of Medicine
Siteman Cancer Center
660 S. Euclid Ave., Box 8100
St. Louis, MO 63110

Specimen Shipment Address:

Central Specimen Bank
Barnes Jewish Hospital, North
Room 2454 Kingshighway Building
216 S. Kingshighway
St. Louis, MO 63110
314-454-7615

 

Sponsors and Funding Agencies

The following families and organizations generously sponsor our program. We are grateful for their unwavering support and dedication to young survivors. Please join us in acknowledging their enthusiasm and kindness.

Sponsors and Private Donations

The Foundation for Barnes-Jewish Hospital

Celebrate Tennis
Celebrate Tennis is a 50-person round-robin tournament held at the Chesterfield Athletic Club. Proceeds benefit the YWBCP. The 2012 event will be held on Oct. 17. Visit www.celebrate-events.org for more information.

Employees Community Fund, Boeing Company of St. Louis
The Employees Community Fund of the Boeing Company is a unique employee-owned and -directed giving program that allows employees to support the needs of their local communities via tax-deductible recurring payroll deductions or one-time gifts.

Philip Johnson Salon and Spa
Each year the Philip Johnson Salon hosts the annual Pink Party, a hair and fashion show highlighting seven talented stylists from the salon in conjunction with local clothing boutiques and fashion design schools. The event benefits the YWBCP.

St. Louis Men’s Group Against Cancer
The St. Louis Men’s Group Against Cancer is a nonprofit charitable organization whose mission is raising funds for cancer research, prevention and care. Funds are channeled through various organizations and earmarked for specific programs in the St. Louis community.

Funding Agencies

Avon Foundation

Centers for Disease Control and Prevention
In 2011, the Centers for Disease Control and Prevention awarded funding to seven organizations, including the YWBCP, to develop support, education and awareness programs for young breast cancer survivors.

National Cancer Institute

In 2011, the NCI awarded a 3-year grant for our Young Women’s Breast Cancer Research Program.

Contact Us

Please let us know if you would like to learn more about our program, receive our e-newsletter or participate in our young women’s breast cancer research program. All programs are free and open to any young woman who’s been diagnosed with breast cancer.

Keri Walton
314-747-7156
walton@wustl.edu

Jennifer Ivanovich
314-454-5076
ivanovichj@wudosis.wustl.edu

YWBCP
Siteman Cancer Center
Washington University School of Medicine
660 S. Euclid Ave., Box 8100
St. Louis, MO  63110