Leap Year and Self-Advocacy

 Happy Leap Day everyone and a special Happy Birthday to you Leaplings out there!

 I think it’s time to touch on self-advocacy. Many of you might be wondering why it took me so long! Anyone who knows me and my work in healthcare could speak to my passion about my own personal self-advocacy, as well as empowering others to do the same. Today I wish to share some resources that can help navigate the world of healthcare in general, let alone Oncology, especially when all the terms and plans of care include things that look nothing but Greek. 

 I came across the Outcomes4Me app in my many hours of research. "Outcomes4Me is the only direct-to-patient digital platform powered with the clinical, evidence-based knowledge you’ll need to best navigate your medical choices. You’ll be empowered with knowledge of the latest in innovative treatment options, clinical trials, and relevant genetic testing possibilities." 

 It has a medication and symptom tracker, medical record request option, evidence-based treatment options including active clinical trials, and a community to connect with others. This provides information in a patient-friendly manner, eliminating the Greek. 

 This would be my #1 recommendation (so far) for ongoing support throughout treatment.

 The American Society of Clinical Oncology (ASCO) Guidelines app was created to "... provide evidence-based recommendations and outline appropriate methods of treatment and care for clinicians. Our guidelines address specific clinical situations (disease-oriented) or the use of approved medical products, procedures, or tests (modality-oriented). Multidisciplinary panels of experts, including patient advocates, develop ASCO’s clinical practice guidelines." 

 Now this one is a little Greek. It might require some further research into the terms used and would be good to discuss with your medical care team. 

 The last and most amazing resource if your brain works in algorithms, like mine, is the National Comprehensive Cancer Network (NCCN). Patients can create a free account and I do recommend downloading the NCCN for Patients app (rather than the NCCN Guidelines app which is more geared towards physicians) as it is more patient friendly. I will caution, this not when to say "I googled it" and pretend like you know all the things, but knowing where this information is and being able to ask about it will only help you in your plan of care decisions. 

 Of note, just a couple months ago when I received guidance from my oncologists, the date of update was May 2023. It has already been updated for January 2024. This demonstrates the focus on providing the most up to date evidence-based research for treatments. 

Here is the example of the guideline for my specific type of cancer, provided to me by my Medical Oncologist/Radiation Oncologist:

 I elected to do neoadjuvant (pre-surgery) chemotherapy (rather than adjuvant or post-surgical) and we do not yet know my pathological (p) stage, but this still provided information for me to make the best decision for me:

This is the patient-friendly guidelines provided by NCCN:

NCCN Guidelines for Patients: Invasive Breast Cancer - There are guidelines for all cancer types so this doesn't stop at Breast Cancer! Get all the guidelines here!

This is a great guide on how to SpeakUp for your care!

 I would be amiss if I did not hit on generational differences related to healthcare decisions. Know that in whatever generation you land, speaking up for your own health can only lead to improved care and a better understanding of your plan. Please support those of other generations to see the benefits of self-advocacy. It could save their life!

TL;DR

• It is a leap year and those who have birthday's today are called Leaplings!
• There are many apps and resources to help us be self-advocates for our medical/cancer care.
• Speaking up for your medical care can only result in better medical care.
• Help support your fellow man (or woman) by understanding how different generations view medical advice and encouraging them to self-advocate. It could save their life!