Hearing "you have breast cancer" elicits a wide range of reactions and emotions depending on the experiences of the individual. Few people today are fortunate enough to have no close connection to breast cancer, but for everyone else, there is a very personal story packed into that one, life-altering word.
But hearing "your breast cancer has spread" can turn your entire world upside down. It is not until you are confronted by this harsh and frightening reality that you begin to comprehend all that it entails. You may experience intense anxieties. "Do I have months or years?" "What do I tell my children?" "What do I do if my treatment stops working?" These serious and heart-breaking questions are part of the new reality of someone diagnosed with metastatic breast cancer. But having a trusting, communicative relationship with your care team can help you get answers that provide more of a sense of empowerment.
We at SHARE recognized the need for improved assistance for those living with metastatic breast cancer (MBC) based on our own experiences. We know that it's easy to get overwhelmed by having so many unfamiliar medical terms and procedures suddenly thrown at you, particularly at a time when your stress levels are already high. Our new app for metastatic breast cancer My MBC & Me breaks everything down into sections, allowing users to move between their Story, Schedule, Notes, and Treatment. With all your cancer-related information in one place, navigating the endless sea of appointments and considerations becomes more manageable. Ultimately, it means more time is available to focus on all the other things in your life that require attention.
My Story: More than Metastatic Breast Cancer
Metastatic breast cancer (also called stage IV breast cancer, advanced breast cancer, or MBC) is breast cancer that has spread to the brain, lungs, liver, bone, or other parts of the body beyond the lymph nodes. In My Story, you can store information about an early stage breast cancer or MBC diagnosis, including whether you've had chemo, radiation therapy, targeted therapies, or other types of treatment. This information can help determine your eligibility to participate in a clinical trial.
But your medical information gives your doctor a complete picture of who you are. You are more than a breast cancer patient! My Story also helps you reflect on your needs, talk about your personal narrative and give details about your life. This will help your doctors understand how you tend to communicate, what your emotional needs are, and what areas of your life they need to consider in making treatment decisions.
From the main screen, you can also navigate to information on clinical oncology trials, types of breast cancer, and statistics.
My Schedule: See Your Days at a Glance
In this portion of the app, you can add and see your appointments, treatments, symptoms and experiences on a monthly calendar. Sometimes it can all become a blur and hard to remember, so keeping everything clearly cataloged is vital.
My Notes: Organize Your Thoughts
In the My Notes section, you can identify treatment goals, log breast cancer research, and enter questions that pop up about medications, symptoms or anything else that matters. You can attach any notes (including voice memos) to specific appointments so you will be reminded to discuss them when you meet with your doctor. Discussing these with your doctor can help you make treatment decisions for an improved quality of life.
My Treatments: Track and Sync Side Effects
Although it can feel like life suddenly stops with a diagnosis of MBC, many people living with metastatic breast cancer are living years longer with improved treatments. Quality of life is important and can help you feel more in control in the midst of uncertainty. In My Treatments, you can track your treatment schedule and list any side effects you experience, enabling you to more accurately report them to your doctor. Jotting down what you are encountering day to day can be a great benefit when it comes to making decisions about your treatment plan.
We know that a mobile app can't ease all the burdens associated with living with cancer. But helping your doctors understand you better and empowering you to explore treatment options makes at least one piece of the puzzle a bit easier. You can download My MBC & Me in the Apple App Store at https://itunes.apple.com/us/app/my-mbc-me-therapy-resource/id1434395302.
The metastatic breast cancer volunteers at SHARE are all trained peers who are also available to lend advice, encouragement, and a listening ear anytime you need. TalkMets, our dedicated metastatic breast cancer helpline, is available 6 days a week from 9:30am-9pm ET. Call 844.ASK.SHARE (844.275.7427) and choose option 6 to talk to someone who understands. SHARE also offers metastatic breast cancer support groups in person and via video/phone; you can find more information at https://sharecancersupport.org/metastatic-breast-cancer