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  • Writer's pictureSurviving Breast Cancer

De Novo Metastatic Breast Cancer

Updated: Sep 11, 2022

By Amanda Raffenaud, PhD.


“You have breast cancer and it’s stage 4 breast cancer.” This was the beginning of my journey with breast cancer: stage 4, right from the start. This is called “de novo” or “stage 4, from the beginning” and something that only 6-10% of all stage 4 diagnosed patients experience. All others—roughly 90% of others with a stage 4 diagnosis— will have had an earlier stage diagnosis previously.



Nothing prepares you for these words. Hearing this stage 4 diagnosis, from the start, is traumatic. Absolutely traumatic. Your mind races with all what you could have done, what doctors could have done, for something…anything…to look different. But here’s the hard reality: I did everything I could to not get to this point.


For four years prior to this diagnosis—yes, 4 years! —I was under strict surveillance with a breast surgeon. Due to family history of breast cancer (both my mother and grandmother), I was seen twice annually for breast ultrasounds and mammograms. The occasional cyst would show up and then I’d be given an “all clear” from the surgeon and sent home with a reminder card to come back for another check in 6 months. I even had annual MRIs. This surveillance happened year after year because there was never anything of concern until there was concern.


One month before my diagnosis, I was at the breast surgeon’s office for my bi-annual check-up. An ultrasound revealed a few new spots but as usual, cysts were suspected. Even my mammogram from this visit came back from the radiologist as clear. Yes, all clear. But the MRI later came back with multiple concerning areas, suspicious of malignancy, including areas in my right breast, lymph nodes, and sternum.



How could a mammogram be clear and an MRI show cancer in at least 4 different areas? Dense breast tissue, that’s how. Yes, it appears my very dense breasts (or cloudy tissue) made it extremely hard to see anything on mammogram film. As I’ve learned now, mammograms are not accurate diagnostic tools for everyone, and they were certainly not effective for my personal breast tissue type.



And, even more concerning, how could I go from multiple “all clears” to a stage 4 diagnosis? That’s a question that still haunts me today. But I do know, there are some things you can do to be an advocate for your own care—both in terms of prevention and maintenance.


1. Take the driver’s seat: Your health is too important to take a back seat. The driver’s seat belongs to you, not your doctor. Ask hard questions. Get second opinions. If things feel off—either in your body or through your intuition—it’s okay to steer your car in a different direction and seek care elsewhere.


2. Pay attention to your body: Your body communicates to you. It often communicates quietly—and then loudly if we don’t pay attention—through aches, pains, fatigue, or just feeling off. I was struck with intense bone pain before my stage 4 diagnosis. My bones were aching, and it hurt to walk (femur bones aching) and even laugh (ribs hurting), but I did not realize this was my body trying to communicate. I now take great care to pay attention to what my body is saying to me.


3. Follow up on all scans and appointments: Don’t skip an appointment. Don’t neglect to schedule that recommended scan. If you do, things could be lurking in your body and you can miss a crucial window of time to act in a timely manner. Although I did not miss appointments or scans, I often wonder if I had taken the driver’s seat and paid close attention to my body, would I have been in a better position to ask the right questions and look deeper when things felt off?

We can be our own advocate. And although we shouldn’t live in fear, we can live empowered. We can use the appropriate tools to take care of ourselves, pay attention to our bodies, and make timely appointments with a breast care doctor. Doing so will put you in the driver’s seat as you navigate the days ahead.

 

About the Author:



Amanda is a proud Florida native, born and raised in Winter Park, Florida. She is a three-time UCF graduate obtaining a bachelors, masters, and doctorate in health care administration and health leadership. She is currently an assistant professor at AdventHealth University and teaches both undergraduate and gradate students pursing degrees in health care administration.


Apart from career, Amanda takes great pride in being a mother to two boys: Luke, a 14 year old 9th graders at the Geneva School, and Jimmy—an 19 year old, sophomore at the University of North Carolina in Charlotte. She and her boys enjoy traveling, hammocking, hiking, going to the beach and spending time with their adorable Labradoodle, Lincoln.


In 2018, Amanda’s life flipped upside down. She was diagnosed with stage 4 metastatic breast cancer. Not only was she completely shocked to be diagnosed with breast cancer at the age of 39, but she was shocked to learn it had spread to dozens of bones in her body. She had no early stage breast cancer diagnosis and was even under the care of a breast surgeon for four years prior to this metastatic diagnosis. She has spent the last nearly 2 years in active treatment for stage 4 cancer, undergoing countless bone infusions, multiple surgeries, and monthly oncology visits. She is taking oral chemo to help stop the growth and spread of cancer.


Amanda and her family are no strangers to hard things. Prior to her diagnosis, Amanda lost her husband, James, to mental health issues in August of 2016. Since then, she has become an advocate for mental health and wellness. She has spoken publicly about mental health issues and uses her social media platforms to remind others that their story matters and their lives are worth living.


It has been almost two years since her cancer diagnosis yet Amanda is thriving and learning how to find life, even in the unknown. She recently received her yoga teacher certification and spends a lot of time in quiet outdoors, doing yoga, and finding joy in the midst of the hard.



 





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