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Inflammatory Breast Cancer
​Support

HOME > LIFE WITH CANCER > FINDING COMMUNITY > INFLAMMATORY BREAST CANCER (IBC) 
Connecting with other young adults with breast cancer is an important aspect of life with cancer. Building your network of support may allow you to feel better about yourself, make new friends, improve your mood, cope better with your diagnosis, learn more about cancer, and better deal with the needs of others in your life.
Below are a variety of supports that you can utilize to expand your support system. These supports are best suited for those with inflammatory breast cancer (IBC).
​

As always, check Young and Strong’s Upcoming Events page for additional opportunities and updates. 
​

The Inflammatory Breast Cancer Program

The Inflammatory Breast Cancer (IBC) Program at Dana-Farber is a dedicated and specialized program that is focused on treatment, research, and education for patients with IBC. This is the only program of its kind in the Northeast where specialists collaborate with each other and the patient to create a treatment plan personalized to the patient's unique medical needs.
The IBC Program acknowledges that a patient's journey with cancer goes beyond their clinical experience. Educational opportunities include: ​

Annual Patient Forum: The IBC Patient Forum is an educational program held every spring for patients and families. Led by experts in IBC clinical care and research, the forum offers updates on IBC treatment and a variety of supportive care resources. 
​

​Watch 2020 Forum Highlights

Patient Education Support Groups: Held at various points throughout the year, support groups offer an opportunity to hear up-to-date information on IBC treatment and research from IBC specialists, meet other patients living with IBC, and share in an open dialogue among participants and providers. For more information, please call 617-632-2311.

Biannual Newsletter: 
​This informational bulletin provides an overview of new research and events for IBC at Dana-Farber and beyond. 
​

   Winter 2021
   Spring 2020
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For more information about the Inflammatory Breast Cancer Program, call 617-632-2311. 

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ADDITIONAL DANA FARBER SUPPORTS
Young Women’s Support Group
Twice a year, the Young and Strong team provides the opportunity for young adults in our community to join a 6-week virtual support group. Facilitated by a breast oncology social worker, these weekly group sessions give young patients and survivors an opportunity to discuss topics relevant to young adults with breast cancer. This group is best suited to those who: 

  • were diagnosed with stage 0-III breast cancer before age 45 
  • are within 12 months of the diagnosis. 

If you’re interested in registering for the next cohort, or would like more information about this group, please email youngandstrong@partners.org. 
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One-to-One Program
One-to-One is a free telephone mentorship program for patients and caregivers at Dana-Farber. This program is designed to be a short-term resource, providing you with support from a volunteer peer mentor over the course of a few phone calls.

Peer mentors are trained volunteers who have “been there” and can be great sources of support and comfort. When matched with a peer young adult mentor who had a similar IBC diagnosis and/or similar treatment plan, they can:


  • Discuss symptoms you have experienced
  • Talk about what to expect from surgery or chemotherapy
  • Identify supportive resources
  • Talk about issues you are facing as a young breast cancer patient
  • Address issues you may face caring for your loved ones
  • Guide you in talking with your child about a diagnosis
  • Discuss workplace issues- e.g., telling your boss

To request a mentor who has gone through an IBC diagnosis and treatment plan similar to yours, fill out a referral form. Please email onetoone@dfci.harvard.edu with any questions.
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SoulMates
SoulMates is a long-term peer support program specifically for breast cancer patients (stages 0-III) at Dana-Farber. This program connects breast cancer patients to SoulMates peer mentors who have been through a similar journey. 

SoulMates peer mentors are trained in topics such as listening, problem solving, and confidentiality and offer emotional support, practical coping tips, and more. They can serve as a guide for patients and connect you with useful Dana-Farber programs and community resources. SoulMates peer mentors help to relieve fears and concerns specific to an IBC diagnosis and treatment because they understand what it’s like to face cancer. 

SoulMates also hosts monthly community dinner meetings for peers and mentors to meet each other and hear from health care professional speakers around the greater Boston community. 


If you want to be matched up with a survivor, contact SoulMates at 617-237-0498 or email the Young and Strong Program team.  
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Young Adult Program
The Young Adult Program (YAP) at Dana-Farber provides emotional support services, opportunities to meet other young adults receiving treatment, and educational programs aimed at enhancing knowledge and self-advocacy skills. “Young adult” is loosely defined as anyone 18-39 years old. However, if you are out of this age range and consider yourself a young adult do not hesitate to contact YAP to see if their programs would be appropriate for you. 

YAP sponsors many programs that offer support to young adults facing any cancer diagnosis. Below are programs that may be of interest to you as a young adult diagnosed with breast cancer.
  • Educational workshops provide opportunities to expand your knowledge base, connect with peers, and discuss topics related to sexuality and sensuality, personal therapeutic outlets, the impact of cancer on personal identity, and more.
  • The Young Adult Support Group is held monthly and is open to any young adult diagnosed with cancer. You can browse the Support Group Calendar to find out when this group meets. For more information or to register, please email yap@dfci.harvard.edu.
  • The Young Adult Cancer Conference is an annual event held for people treated for cancer as a young adult and their caregivers. Throughout the conference, various workshops are held to connect you with other young adults and their caregivers and to learn about the many issues faced during this unique cancer experience. 

If you are interested in receiving email updates regarding events and workshops, please email YAP@dfci.harvard.edu or contact the Young and Strong Program team.

YAP has also introduced a new smartphone app, iaya, that aims to build community around coping skills for young adult patients at Dana-Farber. For more information and to obtain an access code, please contact the YAP team. 

EXTERNAL SUPPORTS

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Young Survival Coalition
The Young Survival Coalition (YSC) is an organization that strengthens the community, addresses the unique needs, amplifies the voice, and improves the quality of life of young adults affected by breast cancer, locally, nationally and internationally. YSC has support for “survivors” - any young adults diagnosed with breast cancer. They have communities for you to connect with others who share similar experiences and support each other. 
  • Join their Facebook Group where you can ask questions, share articles, and make connections with other young adults with breast cancer.
  • Attend Conferences for the chance to meet other young adults with breast cancer and attend workshops designed just for you.
  • Join a Virtual Hangout to connect with others and grow with your peers who share similar life experiences.
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Virtual Hangout for All Survivors and Thrivers
​
Come one, come all! Each meeting is topic-driven by a peer leader and open to any person diagnosed with breast cancer age 40 and under.
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Virtual Hangout for LGBTQ+ Survivors 
LGBTQ+ survivors and thrivers are invited to meet new friends and connect with others who face similar decision-making experiences in healthcare. Fierce advocates to shy listeners and everything in-between are welcome. 
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Virtual Hangout for African American Young Breast Cancer Survivors
YSC has partnered with For the Breast of Us to host a virtual hangout exclusively for African American adults with breast cancer to meet with their peers. 
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Virtual Hangout for Healthcare Provider Survivors 
​
Young adults with breast cancer who are also healthcare providers - YSC has an online group for you! These roles can bring about some specific and important feelings. Come together with others familiar with wearing these two hats and share a safe place. ​

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Living Beyond Breast Cancer (LBBC)
Living Beyond Breast Cancer (LBBC) is a national nonprofit that connects breast cancer patients, survivors, and their loved ones with supportive programs and services.

LBBC hosts conferences where you can connect with other breast cancer patients and survivors and be a part of specialized and interactive workshops. 

The Living Beyond Breast Cancer Conference: Sharing Wisdom, Sharing Strength event is an annual two-day conference that provides unique medical information for specific types of breast cancer and fosters a community of people from across the country that share your concerns. 

LBBC also has supportive resources online that connect you to breast cancer experts, advocates, and other patients through webcasts and webinars you can participate in via your phone, tablet, or computer. You can also access pre-recorded past webinars at any time.

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Sharsheret
Sharsheret is a national non-profit organization dedicated to improving the lives of Jewish women and families living with or at an increased genetic risk for breast or ovarian cancer. Sharsheret offers the below supportive opportunities.

  • The Peer-to-Peer Support Network connects newly diagnosed women or women at a high risk of developing breast cancer with others who share similar diagnoses and experiences to provide one-on-one support. 
  • The Spungen Foundation Family Focus Program offers support to caregivers and families through speaking with a social worker to answer personal questions and access resources to help understand the diagnosis and treatment of breast cancer and the best support options available to you.

Sharsheret also provides additional resources and services including individual psychosocial support, genetic counseling, parenting support, financial assistance, nutrition support, side-effect support, and webinars. ​

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Breasties
The Breasties is a community meant to empower those affected by breast and reproductive cancers by igniting strength and positivity. Through connection, free retreats, wellness activities, events, and an all-inclusive resourceful online community, the hope is to spread the message that whatever you are going through — you are not alone.

The breasties is unlike other organizations, as it is for everyone — survivors, previvors, warriors, thrivers, carevivors and supporters. A topic-themed virtual meetup is planned each week. There are groups for newly diagnosed breasties, stage IV breasties and allies, BIPOC breasties, LBGTQ+ breasties and more. View the event calendar for more information. 
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©2020 Young and Strong Progam at Dana-Farber Cancer Institute
  • About
    • Meet the Team
    • Clinical Sites and Services
    • Research Studies
    • Supporting the Program
    • Contact Us
  • Newly Diagnosed
    • Understanding your Diagnosis
    • Genetics and Family History
    • Treatment Types >
      • Chemotherapy
      • Surgery
      • Radiation
      • Hormone Therapy
    • Building Your Network of Support
    • Coping with Your Diagnosis
    • Coping As A Family
  • Life with Cancer
    • Treatment and Symptom Management >
      • Menopause and Menopausal Symptoms
      • Fertility
      • Sexual Health
      • Lymphedema
      • Tips for Managing Symptoms
    • Supporting and Engaging Your Body >
      • Nutrition
      • Physical Activity
      • Style and Comfort
      • Health and Wellness Tips
    • Logistics: Managing the Details of Your Life >
      • Work and School
      • Financial Supports
      • Getting Organized
    • Finding Community >
      • Early Stage
      • Inflammatory Breast Cancer
      • Metastatic Breast Cancer
  • Survivorship
    • Survivorship Clinic
    • Life Post-Treatment
    • Continued Support
    • Pregnancy After Breast Cancer
    • Volunteer Opportunities
  • Caregivers
    • Resources for All Caregivers >
      • Getting Organized and Managing Logistics
      • Expanding Your Circle of Support
      • Coping: Cancer Impacts Everyone
    • Resources for Family Members >
      • Family Connections
      • Genetic Testing
    • Resources for Partners >
      • Future Pregnancies
  • News & Events
    • Upcoming Events
    • Webcasts
    • 2022 Forum Recordings
    • 2021 Forum Recordings
    • Newsletters
    • Insight Blog
    • COVID-19 and Breast Cancer