(WZAW) -- Metastatic breast cancer is the most serious form of the disease and occurs when the cancer has spread beyond the breast to other parts of the body, such as the brain, bones or liver.
While there have been significant advances in treatment, it remains incurable, presenting unique challenges for the estimated 150,000 MBC patients in the US and their families.
Make Your Dialogue Count is an unbranded website launched by Novartis Pharmaceuticals Corporation that provides resources to help people living with MBC talk about the physical, emotional and social challenges of the disease with their friends, family and treatment team. It includes tools such as an online questionnaire and personalized discussion guide to help patients with MBC get the most out of their doctor visits. The resources featured on this website aim to help patients with MBC better identify and voice their needs, as every person’s experience with the disease is different. To broaden its reach, it’s also being launched for the first time in Spanish.
Dionna Koval, a patient with metastatic breast cancer and advocate, along with Ivis Sampayo, the senior director of programs at SHARE, told their stories on NewsChannel 7 at 4.
Sampayo is a 27-year, two-time breast cancer survivor and has been an active member of SHARE, a national nonprofit that supports, educates, and empowers women affected by breast, ovarian, or metastatic breast cancer, with a special focus on medically underserved communities, for more than 23 years. Originally, she served as the Latina SHARE Director and worked with volunteers and part-time staff to enrich this program from one educational offering a year to over 57. Now the Senior Director of SHARE, Ivis works with staff to improve all programs and increase diversity.
“We educate people, we have educational webinars, support groups. Our helpline is 844-ASK-SHARE where you can speak to another peer,” Sampayo said.
Koval was diagnosed with metastatic breast cancer in April 2014 at age 42, when the cancer spread to her bones and liver. She is an advocate who uses her voice and experiences to help other women facing challenges with the diseases, including her work as a Department of Defense breast cancer reviewer, Hispanic support group coordinator, culinary care volunteer and a Living Beyond Breast Cancer Hear My Voice alumni.
“It really takes you down a road you really don’t want to be. That’s why I’m grateful for websites like makeyourdialoguecount.com because it helped me with the physical and emotional, the social challenges that I face, as well as the spiritual well-being that I face,” Koval said.
She added that it helps get conversation starters she can use to speak to her family, friends and medical team.
If there’s one overall message Koval would share, it’s to make your voice heard.
“We need to care for ourselves. We need to make this a curable disease and take our lives back.”
For more information, visit MakeYourDialogueCount.com