We are fortunate to live in a time when apps on mobile devices become tools to help us with our treatment options for a number of health-related issues. The focus of my blog and mission of my nonprofit Foundation is to empower women and men with information to make an informed decision about options for breast reconstruction after mastectomy. I have the distinct pleasure to present the reader with a decision tool, the Breast Advocate App and an interview with Founder, Minas Chrysopoulo, MD, FACS.
I began my work as a patient advocate in early 2015 shortly after having my successful DIEP flap breast reconstruction. At the time of my second diagnosis in April of 2014, I was given all my options for breast reconstruction by my breast surgeon. I am grateful to her. I was handed a packet of brochures from implant manufacturers, local support groups, photos and explanation of the type of breast cancer I had, a discussion only about using my own tissue for breast reconstruction, and then, I was sent home to think about things.
Breast Advocate App is Available NOW!
I was hungry for more information. Where would I find it? Of course, I turned to the internet. But how did I know the information I was looking at was evidence-based? What treatment options were specific to my diagnosis? Not all breast cancers are alike! Who could I talk to about this? Were there others who went through the same diagnosis and decisions I was thinking about?
I was certain I wanted to have DIEP flap breast reconstruction. What I didn’t know were details about recovery, moving forward with genetic testing, how being on an aromatase inhibitor might affect my quality of life, nutrition after surgery, and the questions just kept popping up in my mind. Like so many other breast cancer patients, I was overwhelmed with questions I needed and wanted the answers to.
I am so fortunate to be able to tell breast cancer patients, both men and women, health care providers, nurse navigators, and anyone affected by breast cancer about this shared decision making app for breast cancer and breast reconstruction that is available for download on iPhone, iPad, Android, and very soon, laptop. All of the information I was so hungry for then is available now in the app.
Shared Decision Making in Your Hand
The YouTube interview with Dr. Chrysopoulo presented in this blog gives an overview and summarizes benefits of the app. Two important features I find to be of particular interest are the Wizard, a unique feature to this app, and the fact everything is right there on your mobile device to access any time you need it. How many times have you looked over information more than once to understand and absorb it? You have the advantage of being able to go back to the app for reference all organized for you on the app.
Here is what Dr. C says about the Wizard taken straight from this breast cancer app website:
“Need help deciding between procedures? After taking your individual situation and preferences into account, the Wizard provides evidence-based recommendations. If your preferences change after researching your options, you can change the answers to the Wizards’ question at any time and as often as you like.”
Take the App to Your Consult!
Dr. C and I promote shared decision making. I learned about the process and concept of shared decision making when I experienced it firsthand in my consult with him for my DIEP flap. This type of digital technology can nurture the process between the patient and healthcare team. As Dr. C says in the video, he heard all too often from patients, “Had I known (fill in the gap), I would have done something different”.
He developed the app to bridge the conversation between the patient and healthcare provider for a number of different situations. After you fill out the Wizard, have a good idea what your preferences are for surgery or treatment, take your mobile device to your appointment for a reference. Your healthcare team will appreciate the fact you are sharing evidence-based information from a team of breast cancer specialists and patients advocates who co-created the app for your own shared decision-making conversation.
Enjoy the interview with the Founder, Dr. Minas Chrysopoulo, about this shared decision making tool in its entirety here. You’ll find out even more features available as you listen to the interview.
Thank you so much for your excellence in breast cancer care and supporting patients Dr. C! DiepCFoundation is grateful to be a Patient Advocacy Partner with Breast Advocate.
Hi Terri. I love your purpose and message. I’m scheduled to have reconstruction step one next week. Evidently he’s taking the skin from my back. I had a skin saving double mastectomy back in June 2018. I have the BRCA2 gene so I opted for what I thought was the best thing. Thankfully the cancer was caught quickly due to yearly MRI’s. So no radiation or chemo, very thankful. The problem was with the other breast for which I volunteered to have operated on as well, with no cancer. I caught cellulitis in it from the operation. It was like a skin eating disease that never stopped. I ended up losing the entire breast with 3 more emergency operations. It still didn’t go away. So I’ve waited almost 2 years with no breast so I could heal from all the trauma and stop the infection on my own. I’m ready now, have a great surgeon at Kaiser but the Corona virus has taken over the world and I don’t feel safe having it at this time. Can you offer any advise? I really want the surgery. I called them and was told it’s still going to take place until they decide otherwise or if I decide otherwise as well. I’m totally blindsided. 🤯
You have been through a lot Teri. I appreciate your kind words. The best advice I can offer now are from the words of my own plastic reconstructive surgeon who made this comment in an article from the Breast Advocate App he developed.
“What if you have surgery scheduled soon?
The decision to proceed with surgery will ultimately depend on several factors that need to balance the details of your diagnosis, the urgency of your surgery, travel requirements, the protocols your team and hospital have in place, and your comfort level. It is very important for you to discuss this with your medical team before making any final decisions.” Taken from this article: https://bit.ly/3daE9R4
I completely agree with this approach. Let your medical team at Kaiser you so respect guide you in your decision. Each facility has protocols in place now for safety measures with any incoming patient. Please be safe and I hope your surgery moves forward as planned with a great deal of success!
All the best ~ Terri