Be Bold About Your Health

2019 so far has been quite a journey. Okay, let’s cut the bullshit niceties – it’s been hell. Where to start? I suppose I’ll dive right in…

For those who weren’t aware, in Fall 2018 I began the lengthy process of waiting to find out if I had breast cancer. It has been an absolute rollercoaster of emotions and incredibly scary. I’m sharing an abbreviated version of my experience in hopes someone will read this and learn just how important it is to take charge of your health and seek second opinions.

My mother was diagnosed with breast cancer in her early 50’s. After a mastectomy she thankfully remains in remission, but as a result, I’ve always been religious about performing self breast exams and getting checked by the doctor annually. When I was in my late teens I had two benign fibroadenomas removed back to back – not uncommon in young women with large breasts. In Fall 2017, my GYN thought he felt something suspicious in my left breast, and I went through a panicked period of getting a 3D mammogram and ultrasound, which ended with the radiology doctor rolling his eyes and saying it was just dense tissue.

Fast forward to this past Fall. While performing a self exam, I discovered what felt like a lump in my right breast, in the upper quadrant near my armpit. It was really tiny, but I decided when I next saw my GYN I would ask for a radiology referral. Health insurance is fun – even though I was confident I felt something, I knew I needed a physician referral in order for my insurance to cover anything. Went to the GYN and asked for a referral…he said I would have to come back for a separate “well woman” exam visit. Sigh. Finally got back in to see him. By this point, it was early December, and I was alarmed to feel a very noticeable increase in the size of the mass, which was beyond a doubt there and growing.

Over the next couple of months into 2019, the most torturous part of this experience began – waiting to get tests, and then waiting for results. First came the radiology visit for a 3D mammogram and ultrasound.

At this point in time, despite the damn lump getting bigger, I still wasn’t particularly worried. I knew I was prone to fibroadenomas and assumed surely, this was a familiar issue. I walked in for my mammogram feeling upbeat and confident.

My feelings rapidly changed. The radiology tech started off very sweetly telling me how much I look like her 23 year old daughter (that comment was exciting given I’m almost a decade older than her! Haha). I’m not certain if it’s because of the visual familiarity, but the tech quickly went into panic mode. She questioned me very anxiously about when I discovered the mass and how much I thought it had grown. When I told her it didn’t hurt, she seemed even more concerned. It took a lot of time for the 3D mammogram, because she took many, many angles (that part I appreciated). As she walked me out to wait for the ultrasound, she looked up at me with huge, glistening eyes and whispered, “Good luck, honey.” I felt like I was on death’s door.

My ultrasound was not of any comfort, either. The doctor told me she couldn’t tell what type of mass I had, so a guided needle biopsy needed to be scheduled. Fine. I made my appointment on the spot as the front desk assistant woefully informed me my insurance wouldn’t cover the procedure and that no, they don’t have a payment plan. I literally ran to my car and barely made it inside before having a full-blown meltdown while hyperventilating.

Most people in my life know I tend to build a bit of a wall/don’t always express my emotions as much as I should. It takes a lot to make me cry. Let me tell you – sitting in my car alone, ugly crying with tears and mascara streaming down my face, I have never felt more vulnerable, alone, and helpless in my life. This was a situation completely out of my control. It didn’t matter how hard I worked or “stayed positive,” I was at the mercy of my genetics and time.

I had my needle biopsy at the end of February, which was performed under the guidance of an ultrasound. For anyone who has to have one, I know it’s scary, but the good news is, it is not invasive. You’re awake and a local anesthetic is applied, and then you can’t feel a thing. The weirdest/most unsettling aspect is your skin tugging as a huge needle is inserted, and a loud tapping sound as the tissue sample is removed. In and out went the needle, and I was in and out and back at work an hour later. Work was a blessing and a curse throughout all of this. I have an incredibly supportive boss and team, and we are SO busy that it helped keep me distracted during all of the waiting…but we were also so busy that I felt guilty for constantly being in and out of the office, and there were many days I just wanted to curl into a ball and stay in bed.

February 28: I receive a call from the radiology office and a very cheery doctor tells me, great news – the biopsy revealed I have a common benign fibroepithelial lesion. She advised me to still schedule a surgical consult to get it removed in case it kept growing. The sense of relief I felt is indescribable. I made a huge announcement on social media about officially being cancer free, hooray hooray hooray! A couple of days later I decided to move forward with booking the consult, because why not just get all of the medical bill debt out of the way in one year, ha! I made the appointment for mid-March, right after my cousin’s wedding in Florida, because I wasn’t sure how many months I may have to wait to get surgery.

The surgical consultation: I breezed into that breast specialist’s office feeling like a million bucks. Florida was beautiful and a blast; I loved seeing my family and meeting new friends. Life was good. The surgeon’s first question was, “So, did radiology read you your results?”

I responded eagerly and with excitement that yes, I was so relieved at getting benign biopsy results! Her face immediately changed and her expression turned strange as she slowly said that no, someone had not explained my results correctly to me. My biopsy was completely inconclusive, and she was extremely concerned I had a rare type of tumor – and, given it’s shape and rapid growth, that it could be cancerous. I needed surgery immediately, and it would need to be more invasive so she could get a proper margin of healthy tissue, too.

I can only imagine what my own face looked like as the surgeon explained all of this to me. Saying the cliche, “my heart sank” doesn’t quite cover it. Going from thinking I was completely in the clear to “maybe I have a rare form of breast cancer” was the most surreal five minutes of my life thus far. But, there wasn’t much else to say – and so, my surgery was scheduled two weeks out for March 27.

The two weeks prior to surgery can only be described as stressful and a complete and utter pain in the ass. Did you know many insurance companies will only cover very specific anesthesiologists? Me neither. Thankfully, my mother told me to call my insurance company to check, and sure enough, CareFirst kindly explained I would need to call the hospital and be certain my anesthesiologist was covered under my HMO. And then the phone calls began. Amidst all of this, the lump in my breast had gotten so large I could see it though my skin if I angled myself the right way in the mirror. Very comforting.

Somehow, no one at the hospital seemed to have any idea what I was talking about, and no one knew how to help me. I called on a daily basis and was transferred to multiple departments. I left voicemails. I spoke to a patient advocate. It quickly became the morning before my surgery and I still had no idea if I’d be stuck paying thousands of additional dollars for anesthesia. Someone had, of course, managed to competently collect my $500 copay over the phone, though…shocker. At this point, my mother, who is a nurse at the same hospital, got involved, and I was grateful to finally receive a call confirming an anesthesiologist covered by my insurance had been assigned to my surgery.

The following morning, I had to be at the hospital by 6 a.m. I am glad to report the surgery process itself was very orderly, and everything moved quickly. Staff were extremely compassionate and kind in the pre-surgical patient rooms. My contacts had to come out before I entered the OR, so I simply remember a bright sterile blur and a kind nurse holding my hand while the oxygen mask was over my face. She told me, “you’re doing so great!” as I heard my heart monitor beeping go wild as I started to panic before the anesthesia immediately kicked in.

I woke up and got changed, and immediately looked down to discover my surgeon, bless her, clearly heard my vain nonsensical worrying about a huge scar, and decided to operate via a small areola incision versus a large incision on the side of my breast. That was an unexpected pleasant surprise.

I’ll fast forward to the part anyone still reading this novel of a blog post cares about – the results. About a week later, my surgeon called and told me the excisional biopsy results revealed I had the extremely rare type of tumor she suspected – a phyllodes tumor.

If you’ve never heard of a phyllodes (I certainly hadn’t), it is a rare type of rapidly growing tumor that accounts for less than 1% of all breast tumors. Lucky me! If you have a strong stomach, google “breakthrough malignant phyllodes.” These bad boys can get so large in a matter of weeks that they break through the skin. By the time mine was removed, it was about 4 centimeters, but that’s nothing compared to how massive a phyllodes can get.

Thankfully, my phyllodes was a benign one. But, having a phyllodes is like having an unwelcome friend for life. They often come back, and about 1 in 4 is malignant. Even better, they aren’t typically affected by radiation or chemo, so a malignant phyllodes means a mastectomy for most women.

In a nutshell, I am now perfectly fine and healing well. I have to see a specialist and get an ultrasound every six months for the next two years, and if I stay in the clear, after two years I only have to get tested once a year/visit a breast specialist annually for the rest of my life.

There is nothing you can do to prevent a phyllodes. I will continue incorporating more raw foods into my diet simply to live a healthier lifestyle, but I am no longer going to give up my coffee – my physician said have my morning caffeine at my pleasure 😂

This experience was a sobering one in a variety of aspects. I keep thinking, what if I had listened to my initial false diagnosis? What if I had decided I didn’t want any more medical bills and waited to see a specialist? What if I didn’t inquire about my insurance and anesthesiologist? Clearly, it is so incredibly important to take charge of your health and care, because no one else is going to do it for you. You have to be persistent, and as I learned, at times demanding.

I also received emotional support in the most unexpected of places. Some of my favorite people let me anxiously vent in circles to them and made these awful months bearable. There are people I considered close friends who didn’t check in with me once to see how I was doing, and therefore won’t know my first diagnosis was a false one unless they read this post. I don’t say this to make anyone feel guilty – it’s just a fact. This was a time where if someone didn’t say hi and check in from an emotional standpoint in general, they simply wouldn’t know. I also felt like a complete ass publicly posting I was in the clear, and then learning “oh whoops, jk.” Conversely, there are people I barely know who asked how I was feeling almost every single day, which was incredibly touching. I became closer and was more vulnerable with some friends than I’ve ever been. There are others, including family, who I hope aren’t upset learning the news via this post, because I intentionally did not want them to worry. I apologize, but it was a waiting period with no answers until very recently. I am blessed to have a large network of people who care about me, and let me tell you, when you have wonderful people worrying about you with no news to tell them, it’s so hard.

Although the odds of anyone reading this also having a phyllodes tumor are slim, I urge everyone to please take care of yourself in all aspects. Make healthy choices. Go to your doctor regularly. And, as needed, get a second opinion 😉 Most importantly, live your life with joy, because you never know what may happen.

Live boldly,

Andrea ♥️