top of page
hero-grey.png

In The Spotlight: Patient Advocates
Transforming Care

piano photo.png

In The Spotlight: Jimmy
Musician, Podcaster,
Kidney Cancer Survivor

Headshot M Herman 2024.jpg

In The Spotlight: Michael
Nonprofit Founder, Patient Advocate, Multiple Myeloma Survivor

karen photo.jpg

In The Spotlight: Karen

Inspirer, Leader,
Breast Cancer Survivor 

patty speaker image.jpg

In The Spotlight: Patty
Speaker, Award Winner,
Heart Attack Survivor

Arlene Marie Karole, FACHE, CHCP, MA, CMP

  • Facebook
  • Twitter
  • LinkedIn
  • Instagram

Driven to Help You

This educational platform emerged as I continued to meet and speak with other advocates, including Jimmy, Michael, Patty, and Karen. While they have similar stories, each is as unique as any individual’s journey along the care continuum from detection, diagnosis, treatment, and healing to prevention. 

 

Despite however the differences in diagnosis, when speaking with each and learning about their journey, I noticed commonalities in experiences and the behavioral actions each took to get empowered and best manage their health. Several of those actions are reflected in the “7 Steps” I created to take charge of your diagnosis, make informed decisions, and participate in your own care.

 

They took similar steps and many added nuances that can help you along your journey to recovery and healing and beyond. So whether you are reading this now and navigating a new diagnosis, undergoing treatment, or supporting someone who is, know these advocates have powerful stories. Each overcame great odds, and know you can, too.

 

So whether it be taking control of a diagnosis of cancer, cardiovascular disease, Alzheimer’s, diabetes, or any illness, let us empower ourselves, in part, by learning about our illness and examining the lifestyle choices we make on a daily basis that may influence our health in a good or not-so-good way. 

​

Awareness, playing a proactive role, and fully engaging in our day-to-day behaviors and following the path of preventive healthcare is easier to achieve, as opposed to the path of getting better once we have a medical diagnosis. We have choice and control.

 

Here are their stories!

TOGETHER WE GOT THIS!

Arlene

​

Resources

CISCRP-logo-_small-square.png

The Center for Information and Study on Clinical Research Participation (CISCRP)

NIH.png

National Cancer Institute (NCI)

NCCN.png

National Comprehensive Cancer Network (NCCN)

American Cancer Society

(ACS)

AHA.png

American Heart Association (AHA)

7 Steps

7 Steps to Own and Take Charge of Your Diagnosis

​

graphic2.jpg

1- Listen To Your Body

If something doesn’t feel right, it may very well not be. Be persistent. Listen to your inner voice, your gut instinct. Not sure? Then see your doctor. While there may be some fear in finding out you have an illness, wouldn’t you rather catch it early than after it’s too late? I thought you’d agree!

​

2- Go To The Doctors

Go to the doctor (and there will be multiple ones and many visits) and be your own advocate. While I had excellent doctors, they are busy, so make sure you have questions ready for them. Don’t be intimidated if they try to move you quickly out of their office after you waited forever to get in! Think about the detailed questions we ask when shopping for clothes, a home, a car, or take-out food! The doctors you choose will literally have your life in their hands. Do not feel guilty, either, if you feel strongly about getting a second opinion. Healthcare is in part a business; you are the customer, and your business is taking care of you!​

​

3- Make Sure You Take Notes

While at the doctor, as my mom and best gal pal Anita suggested from my very first doctor’s appointment: make sure you take notes. These notes were invaluable in helping me keep track of the tremendous amount of information that was coming at me and allowing me to compare information from one appointment to another and to assess my options and better understand my diagnosis.​

​

4- Bring Someone With You

Make sure, if you can, to bring a friend, family member, coworker, or someone else you trust to your doctors’ appointments. This is a person who will help think with and for you. You may be overwhelmed, as I was, with varying emotions of hope and fear and anxiety. It’s important to have someone who can help ask the questions you didn’t think to ask, are too exhausted to think about, or are too scared to hear the answers to. I’m just being real; these things can (probably will, at some point) happen!

​

5- Reach Out For Help

In the beginning, I knew no one with breast cancer—or so I thought—until I started to open up and talk with other women (and men!). I wanted to know what type of breast cancer they had, what type of surgeries and treatments they chose, and how they are doing now, post-surgery. Initially, I felt embarrassed. It is a very intimate disease. I get it; I was there. But know this: if you open up, I promise you will find unconditional love and support on the other side.​

​

6- Get Copies Of All Your Medical Records

Whether MRI reports, X-rays, pathology slides, CDs, hard copy paper reports, or any tests or procedures, get your medical records. It is your legal right! And if you choose to go for a second opinion, you should bring the results with you and likely send them ahead of time. By the time my doctors called to report the results, I often had them—before their call! And, I was ready with my questions. Be proactive in your own care.​

​

7- Research, Research, Research

From your doctors’ appointments to your medical tests, make sure you understand the words and definitions. I can’t emphasize this enough. I was overwhelmed with a myriad of terminologies that were completely new to me. While my healthcare providers were excellent, they don’t explain everything. Do your research by asking questions of your doctors and going on evidence-based and reputable websites. Doing this gave me control and helped me own my diagnosis and be better informed, and these things allowed me to be prepared for the difficult decisions I faced.

Contact

amkjustdiagnosed@gmail.com

For Information and resources specific to breast cancer visit amkjustdiagnosed.com

© 2024 by AMK for Patients. Powered and secured by Wix

bottom of page