One Woman’s Experience Being Diagnosed with a Rare Breast Cancer Tumor During a Global Pandemic

2020 was going to be my year. I was turning 30 in March and was ready for a fresh start into my new decade. I planned out my whole birthday month with special activities: The ‘Month of Serina’, I called it! On top of that, I was planning a big trip to Asia with one of my best friends, a treat to ourselves for surviving 30 years. It was going to be a time to appreciate myself, who I’ve become, and how I’ll continue to grow into my own. I was going to stop making excuses and live the life I wanted to live. I know technically I could have done that at any point in my life, but as I said, 30 was going to be a fresh start!... It was a fresh start, alright.

photo by Laura L` — photo by Laura Lopez

Now, let’s rewind a few years. In the fall of 2018, I discovered a lump in my left breast through a self-exam in the shower. It wasn’t hard like a marble, which I knew to be a sign of breast cancer, but it was terrifying nonetheless. I made my appointment and was relieved when the doctor told me that it was a Fibroadenoma. A Fibroadenoma is a benign tumor commonly found in the breast. I proceeded to get checked every six months, as well as get ultrasound scans. The ultrasound is used to monitor size, echotexture, vascularity (blood flow to it), and borders (smooth or irregular) of the lump.

The lump itself never really bothered me too much. It was in an inconvenient spot (below my nipple), and it could sometimes feel uncomfortable wearing a bra wire or sports bra band, but that’s really it. It was a part of me, and I knew some other girlfriends had Fibroadenomas too. So I thought nothing about it.

Fast forward to December 2019. I was on a road trip to Oregon to help my friend move. In the days leading up to the trip, my breast felt very sore and was a little swollen—which is not uncommon around the time of your period when dealing with Fibroadenomas. The first day on the trip, my breast swelled and the lump seemed to have grown to the full size of my breast. I have/had little breasts, so it didn’t take much growth. I was in such pain that any movement or even fabric touching it was unbearable. I emailed my doctor and thankfully already had an upcoming check-up scheduled for a week or so later. She gave me advice on what to do, and by the third day, it was back to “normal.”

Like I said, this lump was a part of me every day and it never really bothered me. I had noticed prior to my December appointment that it grew and was now obviously protruding. At my appointment, the doctor didn’t seem too concerned because, although it increased in size, it wasn’t hard or fused to my breast tissue.

A few weeks later, I was scheduled for my normal ultrasound. This time, it was different. They brought me into a small room to discuss getting the lump biopsied. I was used to seeing a woman doctor, and this “random” man wanted me to get a biopsy?! No, thank you! This lump doesn’t bother me, and I’m not made of money. My doctor called me and said she thinks it’s a great idea to know what exactly we’re working with. FINE, I’ll get the biopsy! And that’s when it all started.

The pathology report showed dying cells, but I recall being told it wasn’t cancer. Phew! But it was still suspicious. I was recommended to see a breast surgeon to find out potential next steps. My doctor recommended two people, and for some reason, when I called the number she’d provided, I decided to leave it up to fate: I’d ask to be given any doctor closer to where I live instead of the doctor she recommended. Yes, I literally left it up to fate, and I’m so glad I did.

Upon meeting Dr. B on March 3rd, she said, without hesitation, that the lump had to be removed. She threw out the words, which I now know to be Phyllodes and Sarcoma. Huh? Phy what? Is that with an F or a P? Sar what? FINE, so we scheduled the lump removal for mid-April. I got laid off the next day and debated even having the surgery. The biopsy was already so expensive with insurance, and the lump removal was going to cost even more money. After much debate, I decided to go with the surgery, and they were great enough to work with my limited time frame before I ran out of insurance at the end of the month. March 16th, three days after my 30th birthday, the lump was removed. That’s that! So I thought...

My follow up was on March 24th. I was feeling good; I was ready to get back to running, which is one of my favorite things to do and put this all behind me. Dr. B came in and told me the pathology report said I had a Malignant Phyllodes Tumor (that F, or was it Ph word again), and I needed to have a mastectomy. The only two words I heard were malignant, which I knew meant cancerous, and then mastectomy. I LITERALLY almost fainted on the table and couldn’t stop crying. I was to speak to a breast reconstruction surgeon later that day.

Malignant Phyllodes Tumor: rare tumor of the breast, can be hard to distinguish between a fibroadenoma. It’s a sarcoma, which grows in connective tissue. The cause of MPT’s are unknown, but it’s possible to be an inherited genetic disorder.

A little background on myself: I don’t often get sick or injured, and even if I do, I put off seeing a doctor for as long as possible and try to let my body heal itself. I don’t go to the doctor’s office unless it’s unbearable. After the doctor told me my fate, I went through what I would say are common feelings of grief: denial, self-pity, anger, fear, sadness, and the list goes on.

The tumor was aggressive, but it wasn’t spreading throughout my breast. It seemed just to encapsulate that one area. Good because it wasn’t spreading, but bad because it was aggressive.

Now, remember, I was losing my insurance on March 31st. There was no time to think or get a second opinion (all I was doing was crying, to be honest). With COVID-19 going on, my surgery required multiple authorizations from the hospital since they were limiting surgeries. I spoke to a breast reconstruction surgeon, Dr. T, the same day that I was told about my mastectomy. It was overwhelming, but also educational about what would happen after the surgeon removed my breast. Was this really my life? I always wanted bigger boobs, but not like this! That Friday, March 27th, Dr. B called me to inform me that the surgery got approved and to answer any questions. She said that she believed she could save my nipple (also known as a nipple-sparing mastectomy). But, once she was operating, if she saw anything dangerous, she would remove it without hesitation. Upon waking up, there was a 50/50 chance I’d still have a nipple—that was all I heard. I was already upset about losing my boob—I’m using boob here on out—but I didn’t realize how the idea of potentially not having a nipple would affect me. They have nipple reconstruction surgeries, but to think of having another piece of me taken away was scary.

It was 5:30 am on Monday, March 30th, the morning of my mastectomy. My cousin and I got into her car. The moon was still out. The streets were eerily quiet, with almost no cars on the road. I was blasting music to calm me down and talking to my cousin about the artist I was just on tour with… a good memory and something to distract me the 15-minute car ride to the hospital. We arrived so quickly. She dropped me off at the entrance. I didn’t want to go in. Going in made it real. The hospital was practically empty. I went to the third floor, where I was greeted by a nurse who gave me a COVID check before entering. They brought me to the back area to prep. I felt so alone. To those nurses, it was just another day at work. To me, my whole future was going to change. Nothing could take away my fear and anxiety. I wanted to cry into someone’s arms—into my mother’s arms, but she was 2,000 miles away in Chicago. I wanted her to be with me and tell me I would be ok. With COVID happening, it had been weeks since I had a real hug. I woke up in the recovery room and started crying. I wasn’t only crying because of the pain, but because I was hoping to wake up from this bad dream and that I’d be fine.

After it all, I will say that I was lucky. I had a nipple-sparing mastectomy, and I currently have a tissue expander in place. The first thing I said to my cousin when she picked me up was, “I still have my nipple.” The pain afterward was unbearable, even with pain meds. I wish someone told me sooner to get a sit up pillow or to workout my abs prior to the surgery so I wouldn’t struggle to get out of bed. (My bed is very low to the ground, which was not helpful. Please take note if you’re about to have this surgery.)

Besides the scarring and my nipple not functioning like it used to (for example, if it’s cold out, it no longer gets hard)... I’m alright. The unbearable pain didn’t last that long. Each day after surgery, it became fainter and fainter. My left arm still has limited movement, but physical therapy and the removal of the tissue expander should have me back to “normal” when I get the implant.

Two weeks after surgery, I got an upper-body CT scan that came back clear, but paranoid Serina has a hard time accepting good news. There is a possibility that the cells could spread to the lungs. As I said, the scan came back clear, but CT scans can’t see anything smaller than 5mm—which is about the size of a pencil eraser tip. Dr. B kept assuring me it was good news, but fear took over. I couldn’t enjoy the moment, and I still can’t enjoy it to this day.

Before my CT scan, I had a FaceTime consultation with a radiation oncologist. My doctor explained that chemo is not normally used in my case, but radiation is a possibility whether they find something or not. MPT have a local recurrence rate that varies from 6%-35%, but with a mastectomy, the number goes down. If it grows back, radiation is more likely a possibility.

I knew this experience would be physically exhausting, but I didn’t realize how mentally exhausting it would be. To this day, I’ve only cried five times. About 1-2 weeks after my surgery, I was finally ready to google exactly what I had. Sounds stupid, but any medical facts about my condition scared me more than the actual surgery, so prior to my mastectomy, I intentionally kept my knowledge very minimal. I’m a sucker for WebMD or Google, so I didn’t want to expose myself to triggering information. I had to google definitions of words I wasn’t familiar with. Even thinking about the word cancer still scares me!

As I previously said, this lump never really bothered me. To find out that it was cancerous was eye-opening. I don’t want anyone to be naive like I was to think that just because it doesn’t hurt, doesn’t mean it can’t be bad. I’m not saying this has made me into a Hypochondriac, but it definitely has made me take my health more seriously. Any little pain in my right boob scares the shit out of me. It is even more rare to have MPT in both breasts, so that’s a plus, but still scary! I can’t tell if it’s in my head or real!

Unlike most cancers, there is no known cause. Many breast cancers can be fueled by hormones, your diet, genetics, etc. However, with MPT, I don’t have that luxury of knowing what fuels it, so I don’t know what to change or do better. It could be an inherited genetic mutation, and if it is, there is truly nothing I can do in that case.

When I first heard I had to get my boob removed, I didn’t want this experience to go to ‘waste.’ I wanted something positive to come out of it. I decided to get in contact with women who have had or currently have breast cancer and needed to get a mastectomy. To be honest, their insight wasn’t as comforting as I thought it would be. All of them were wonderful and inspiring women, but their thoughts made me realize we each have our own journey. Sure, our emotions were probably VERY similar, but they have their own scars, their own fears, their own things to process. I have mine. I reached out to KAB to share my story because this could happen to anyone. Knowledge is power, and if I can educate one person, then this all had a purpose.

Remember how I said I left it up to fate when being assigned a breast surgeon? Well, it turns out that Dr. B is the most experienced doctor at my hospital who has seen and worked with Phyllodes Tumors. Plus, my cousin’s previous coworker works with Dr. T, my breast reconstruction surgeon, and had nothing but great things to say. Such a relief. THEN, on top of it all, the world was/is on hold because of social distancing. I didn’t have to worry about FOMO. I could recover at home in peace. I didn’t want the world to go on without me while I was in pain.

And remember how I said 30 was going to be a fresh start? Well, I’m still waiting for my implant, but I feel a new peace and confidence-building inside of me that I’ve never had before. During this healing process in quarantine, I’ve really dived deep into who I am, what I want out of life, and where I want to go. I’ve stopped making excuses. I’m more open, brave, confident. I’m learning to love myself all over again. The person who I thought I was becoming is nowhere close to who I actually became in the last nine weeks of my life. I’m a badass, I’m strong, I’m loved, I’m supported, I’m me. No one has gone through my journey, but they can walk with me along the way and hopefully take something positive from it.

But don’t call me brave. People keep saying I’m brave and I don’t like it. For me, being brave is when you have a choice to either jump in or stand on the sidelines. I was thrown into the deep end in March—I didn’t have a choice. I wasn’t going to take the chance of having this tumor spread to other parts of my body. Doctors weren’t taking new patients and were significantly limiting face-to-face appointments. I had six days to process everything. If I had a choice, I would not go through this. Don’t call me brave. I’m not brave, but I’m strong. I’m strong because I have to be.

Life isn’t going to stop because I feel sorry for myself being dealt this card. Life moves on no matter what happens, so you can either fight it and make it worse, or you can embrace it. This was the hardest thing I’ve ever gone through, and I’m only halfway there. It’s not only physically exhausting trying to recover, but mentally. Everyone has their own journey, breast cancer related or not. We can’t go back to our pre-cancer days, but by pushing forward, we can work on getting better for ourselves. That’s what makes us strong.