Med student + breast cancer survivor

@rebeccajulinet

D: So you just moved to California! Congratulations from someone stuck in a very cold Michigan. How is that move going?

R: It feels good! I actually live in the Bay Area and so we still get all four seasons. It’s pretty chilly here, but at least it’s 30 degrees warmer than New Jersey, so I enjoy that combination!

D: A perfect blend. You started influencing on your instagram page a while ago. You use this platform today to talk about skincare, wellness, lifestyle, and things like that. What made you want to start? When did it go from “this is my social media page” to “this is a brand?”

R: At first my instagram was very personal and I had a sort of separate page where I spoke about skincare. Having had the medical aesthetician experience in the doctor’s office, this was something I was passionate about. For a long time after I was diagnosed with breast cancer, I really wanted to keep what I was going through private and not tell anybody, you know? Very few people in my life knew what was going on and I wanted to keep it that way. But the night before my surgery— like, quite literally the night before, something in my mind clicked and I felt this urge, like, I needed to use this platform to tell my friends and family my experience. It had been such a long journey and I was only able to get the help that I needed from the knowledge I had gained as a pre-medical student working in a doctor’s office. I knew that I had to be treated and that they couldn’t turn me away, because of all the ways in which I was educated. This really drove me to get onto social media and say “Here’s what’s going on in my life,” because I know it will help someone.

D: And there is also something to be said for how expressing yourself on social media and sharing your side of the story can be therapeutic. So, delving into that health piece for a second, you were diagnosed with breast cancer at the age of 27. For reference, the mean age of diagnosis is well above 50 in women. I mean, we don’t even do screening mammograms at 27! You did not even have family history or the BRCA gene. And one day you just woke up with bleeding. What happened next?

R: So as I said, I went to my coworker, a physician assistant who had had breast cancer in her life and she wrote me a script for a mammogram and an ultrasound. She said “You need to get this checked out,” and I immediately knew it was serious. The doctor we worked with had dismissed my bleeding as stress, but I knew I needed answers. But, as I’m getting ready to leave the clinic with my two orders, the doctor comes up to me and says “Can I see the script the PA gave you?” She looks at my papers, and takes the mammogram away from me, telling me I don’t need it. She returns the ultrasound and sends me on my way.

D: And this was your boss—

R: Mhm. And that part of it is hard for me to talk about, because that was not just any doctor, but an employer. It was someone I worked for. As if that wasn’t enough, when I finally left the office, with my ultrasound script, I did not have any insurance. I was 26 at the time and had just lost coverage with my parents. Literally everything was going downhill. And so, I had no choice but to wait and I spent so much time doing that. Just waiting, waiting, and waiting to get insurance and nothing was working out.

One day I was laying in bed and I looked down at myself, and I saw the blood actively coming out of me. And I just got up, decided that I could not wait for anyone or anything, and I just drove myself into the hospital. I knew that I needed to be seen.

Eventually, I’m sitting there, in the hospital by myself and they’re checking me out, as I’m bleeding. I’m getting what I wanted. But still, the only thought that crosses my head is, “Oh my God! How much is this going to cost me?” 

D: Not something that should be on the forefront of anyone’s mind when they are bleeding out of their chest. 

 
R: No! And to make it worse, the whole time the nurses refused to perform an ultrasound on my breast. They kept telling me, “You’re just 26, it’s probably a cyst, here’s some medication for it!” or “No, no, no, you don’t need an ultrasound, we are not a breast facility.” But I kept insisting. Something in me knew that I needed to be scanned today. The doctor finally agreed to do a sonogram. He tossed me some medication with whatever he had found on the screen and sent me home with a diagnosis of “It’s probably not breast cancer!”

I ended up taking the medication anyway and, obviously, nothing resolved. I eventually got on medicaid and state insurance, which then allowed me to retrograde my testing. I got a second ultrasound with the script I had from the doctor’s office where I worked, and at this point everything on these tests is coming back negative. But I remained unconvinced. Like I said, there was a voice in my head saying I needed more answers. For weeks, I was at work just panicking. On every break, I would be calling doctors, seeing who would be willing to take my insurance. But no one wanted state insurance. Which doctor’s office wants to get the lowest paying option there is? And then when I finally got in to see a provider– finally– the first question I got asked was “why did you wait this long?”

D: Well it was not a choice!

R: I was like, “I have been trying, but no one wants to see me!” What do you mean “why did you wait this long?” Who says that? My symptoms started in September, but I was unable to get an appointment until March or April with either an ObGyn or a breast surgeon. And this was as a person who really did the most to fight and advocate for herself. I can’t help but wonder what happens to people who don’t know that they can demand to be seen? For people who don’t know that they can say “No!” to a treatment path that their doctor prescribes?

D: And I wonder how much of that self-advocacy was your pre-med background that made you want to stand up for yourself. It’s a body and an industry that you are familiar with and so you can ask for things in a clinical setting in a way that maybe other people haven't asked for. I’m the same way. There have been times where doctors have diagnosed me with things that I know I don’t have, and I’ve fought back till I get the answer I deserve. Did your pre-med background save your life?

R: Absolutely! I was capable of understanding journal articles, I knew the science, and so that is all I would do. I would read so many journal articles outlining my symptoms and try to figure out for myself what I could be going through. One day I walked into the office and said “I think I have Paget’s disease.” My doctor laughed it off, saying “That’s impossible.”

Never in my entire life have I heard a physician say that something was impossible. What is impossible in medicine? In science? Of all the bizarre things that we see and read about?

D: And it’s not coming from WebMD? You’re reading peer-reviewed, documented literature of cases where Paget’s disease has been found in younger females…

R: Yeah that was a really rough period where I felt like I was being ignored. Where my opinions on my body weren't being heard or respected

“I can’t help but wonder what happens to people who don’t know that they can demand to be seen? For people who don’t know that they can say ‘No!’ to a treatment path that their doctor prescribes?”

D: So at this point, it’s been nearly half a year since you started wanting to see someone. You get your foot into the door with a doctor, you tell them “I think this is what is wrong with me!” They laugh it off. What happens next?

R: Eventually, I had a mammogram, which showed that something was in fact wrong. This meant I had to go in for a biopsy. At this point, I knew inside of me that I had breast cancer. It was a gut feeling that came way before the formal diagnosis. And surely enough, when the doctor came out he told me that even when he cut from a site that was farther from where he was initially supposed to biopsy, he found cancer cells. 

A week later, I went in to see a breast surgeon again. She looked through my scans and within eight minutes of me entering her room she told me that I had breast cancer and then proceeded to ask me how I felt about having one small boob.

D: I’m sorry, did you say eight minutes?

R: Yes. You studied your entire life to be a breast surgeon and this is how you prepared your conversation to tell someone they have cancer. The eight minute conversation we had, I led it. I would ask a question and she would answer, I would ask another question and she would answer.

D: And this is your first official diagnosis? The first time a doctor has told you that you have the “C” word— as we call it at my clinic? Because really– it’s a scary word and it’s a heavy one at that. We use it sparingly and with a great deal of discretion and respect. 

R: And she just asked me! Out of nowhere, just like that “How do you feel about having one small boob?” I was like, wait hold on— don’t I have the option to reconstruct? Don’t I have the option to get a mastectomy? She assumed, without even consulting me, that I would be having a lumpectomy for aesthetic purposes! But for me, I was more concerned about the fact that if I had cancer at this young age, there were significant chances that it could reoccur. I wanted both breasts gone. I was so far from thinking about the aesthetics!

D: Based on the other two interviews I have done so far, I’ve gotten the sense that a lot of different factors play into this medical bias. It can be age, it can be sex, gender, insurance status. In your case, what do you think led to your agency not being respected?

R: This is hard to explain and to say, but we know the facts. She knows these facts. About the recurrence rates and my age. And I almost felt like she wanted another surgery out of me. It’s terrible. But the way she replied “Oh! We’re going to continue monitoring you after the lumpectomy,” when I expressed my concerns— every 6 months, I would have to get an MRI, a mammogram, an MRI, a mammogram, an MRI, a mammogram for the rest of my life. I was 26!

D: You would never be able to put it behind you.

R: No! What kind of life would I be living? So I can’t help but think, did she just want my money from all the procedures? I refuse to think that this was her being careless. That she was just “forgetting” about the other options when she brought the lumpectomy.

D: You don’t get to be a highly specialized doctor, a breast surgeon, by forgetting the options like that. This is her job. This is what she trained to do her entire life.

R: Exactly!

“Still, the only thought that crosses my head is, ‘Oh my God! How much is this going to cost me?’”