Be Your Own Advocate

I am not a fan of pink – I’m just not.

I do not like being put in a color box because I am a woman and pink is feminine. Pink is a color – not an identity. However, this month, October I love pink. Pink signifies survival. My mother is a brave breast cancer survivor. My grandmother was also a brave breast cancer survivor. My cousin who beat breast cancer, but was taken from us after cancer returned in her brain. So many friends and family members that I could make an entire post filled with their names, who have bravely fought the battle with breast cancer. Women who make me proud to wear pink. Women who gave me the strength and knowledge of how to not only trust science and medicine, but to ask questions and advocate for myself.

I do not have breast cancer, and for that I am grateful. I know I do not have breast cancer because:

✅I follow the recommendations of medical professionals.

✅I perform self-examinations.

✅I get a mammogram every year.

At 37, I asked my primary care doctor for a referral for a mammogram. The year before, the recommended age to begin mammograms was pushed from age 35 to 40. When she looked at my family history, she gladly made the referral – but only because I asked and I have received a mammogram every year since.

My first mammogram showed ‘dense breast tissue’ which could be difficult to detect masses with a mammogram alone. Though, each year, my mammogram came back ‘clean’ with no concerns.

Until this year…

I read “There is an isodense, oval mass measuring 14mm with obscured margins seen in the posterior one-third upper outer region of the right breast” from the MyChart app while I soaked in the tub after my daughters’ swim meet.

I froze – I was terrified. A mass in my breast.

It was a Monday night and I had no other information, with the exception of what WebMD had to say. I didn’t know what this meant, so I messaged my doctor on the app. Then, I read the report to my husband and we sat silently while we processed what this could mean. And of course, I did all the things I tell people not to do. I hopped in my time machine and traveled into the fearful future I made up in my head and began planning for what may come – not a helpful practice.

The next morning, I called the office where I had my mammogram and scheduled a “diagnostic mammogram and targeted ultrasound”, as recommended in the report I read on MyChart app, to get more information on what was going on inside my boob. In the meantime, my doctor messaged me back encouraging me ‘not to worry until we have something to worry about.’ That was Tuesday morning. The “diagnostic mammogram and targeted ultrasound” were scheduled the FOLLOWING Friday morning – 10 days away.

I told a couple of close friends, but kept this to myself. I didn’t want worry anyone else until I had to.

Honorable, right? WRONG!

My problems, my fears, my issues and my struggles are worth the worry of others. I did not have to go through that alone and each time I shared my fears with someone I trusted, I felt better – lighter and better able to function in the midst of the torturous holding pattern of waiting for more results.

After the diagnostic mammogram and targeted ultrasound, the radiologist explained there was not only one but two masses in my right breast and the recommendation was to biopsy both of them. I was a fan of this plan, because if there is something in there, I wanted to know what it is. I asked the radiologist how they found the second mass. He said the ultrasound is more sensitive than the mammogram and is able to pick up masses a mammogram misses.

My next question was ‘then why aren’t we doing an ultrasound on my left breast to make sure the mammogram didn’t miss anything there?’ He agreed and said if I waited while they contacted my doctor for an order, they would do the ultrasound right then. And guess what…there were two small masses in my left breast as well. These were much smaller and did not indicate any concern, however, they are there and now we know they are there – because I asked.

I was then scheduled for an ultrasound biopsy the following Tuesday – 4 days later – on both masses in my right breast. It didn’t feel great, but it wasn’t the worst thing I’ve ever felt either. There was a lot of pressure, but the doctor and the nurses were wonderful in explaining every step and checking in with me along the way. They realized, they do this every day, but I do not and they treated me as such which I am grateful for.

I had bruising, bandages and swelling, but I’ve also had bug bites that have caused about as much discomfort. I felt empowered to take action to know what was going on with my body. The action fought against the fear of the unknown. The practice of mindfulness was extremely helpful to my mental health during this time. Mindfulness stopped me from time traveling down a path that I may never walk.

About 24 hours later, as I was getting seven inches of my hair chopped off at the salon, the doctor called me with the results and she led with ‘Stephanie, I have good news!’ From there, I heard very little other than the word ‘benign.’ She told me I didn’t need to do anything else for follow-up unless I had issues with the incisions. Sweet relief rolled over me!

Even in that celebratory moment, I remembered a note from the initial mammogram report which indicated I was now at an “increased lifetime risk for breast cancer” and an annual MRI was appropriate for additional screening. I asked her about the note, and she said I would be eligible and my doctor could order it no problem. Again, I asked the question to get the answer.

I am grateful for medicine and for medical professionals – more so than I have ever been. They have so much to juggle, monitor and prioritize without working from home or calling in sick. Medical professionals are our partners in taking care of health and it is our obligation to ask questions and participate in our medical care.

I share my story today, because I was terrified when I got these results. I read words I didn’t understand and I was intimidated to ask questions, but my medical professions held space for me and even encouraged me to do so. I wasn’t made to feel inferior or stupid for asking, nor did they make me feel like I was bothering them. And when I asked questions, I got more answers – it’s that simple.

I advocate for people for a living. I consider myself outspoken. And still…I struggled to ask the questions to make sense of what was going on in my body.

Ask the questions. Find doctors and nurses and therapists and facilities who encourage you to do so because it is your body and your health and you have an obligation to yourself and those who love you to take care of you!

Your concerns, your fears, your issues and your problems are worthy of the worry of others.  

✨Ask the questions

✨Share your story

✨Reach out for support

(Spoiler Alert – YOU ARE NOT ALONE!)