October is Breast Cancer Awareness Month. Most of us have been touched by cancer one way or another. If there’s one thing I’ve learned, it’s being open about health can save someones life.
Today I’ve decided to make the challenging decision of welcoming you into a life changing health scare that I had in my early 20s. My hope is that ONE person reads this and gets checked, because it potentially saved my life and it could save yours.
I want to also start by saying I’ve kept this very private for years, because I don’t enjoy sympathy or want anyone to feel bad for my experiences. If it wasn’t for this, I would not be who I am today!
My Health Story
Flashback to 2007
When I was a Sophomore or Junior in college (I can’t exactly remember the year), I had legit no cares in the world except for which party I was going to next! I went to University of Arizona, had little to no life plans, skipped classes to hang with friends, and was the ultimate weekly party coordinator. Don’t get me wrong, I definitely wanted to graduate and get a good job, but living in the moment and being carefree was totally my lifestyle!
Somewhere around that time, I noticed a tiny little dimple on my right breast and would make jokes that I needed botox to get rid of it. Sounds funny, but in reality there was so much inside of me going on that I had no idea about.
When I went to my annual OBGYN appointment, I showed the doctor and she said the small dimple was nothing. I continued living the college life and went back to the doctor a year later. 2008 rolls around, and this tiny dimple was becoming larger. It slowly grew and became quite visible. If I wore a swimsuit, people definitely would see it. And it just got worse from there.
I went back to the same doctor about a year later, and she didn’t feel a lump or anything so she sent me on my way!
Fast forward another 6 months, and I went back to the doctor and basically demanded tests. I knew there was no lump, but the indent had become significant and it started to concern me. This time the PA saw me, and she ordered an ultrasound and referred me to a radiologist to make sure the dimple was actually nothing.
That week I went to the radiologist. This is the appointment that changed my life forever.
The Appointment
In 2009 I was 22 and had recently graduated college. I was working in retail management and had scheduled an appointment during my lunch break. I asked my mom to come meet me at the doctor’s office.
Remember, I didn’t have a lump, I had a indent that my doctor for almost 2 years didn’t seem concerned with, so going on my 1 hour lunch break didn’t seem like a big deal.
At the appointment, I had an ultra sound and mammogram (mammograms really don’t show much at 22 – your breasts are just too dense), and I think they did another test, but I can’t remember.
After the tests, I waited for the doctor with my mom. The radiologist came in, sat down and I could just tell on her face it was terrible news. She said, and I quote, “you have breast cancer.” These are the words that forever changed my life. HOW could this be? How can a super active, healthy 22 year old have breast cancer?? How is this possible? It can’t be right.
She said to be 100% certain we needed to do a biopsy as soon as possible.
I immediately started balling and I could see the fear in my moms eyes (her mother passed away from breast cancer, and my father’s mother had breast cancer, as well).
As I walked out of the doctor’s office, the entire office’s faces were just so sad. Some even hugged me, it was awful and unlike anything I’ve ever experienced before and I hope to never experience again!
We scheduled a biopsy for the following morning, to make sure her prediction was correct. And with all of that to take in, I had to go back to work! It was a nightmare. I felt like I was in a bad dream. I left my car at the doctor’s office and my mom drove me back to work. The entire ride back I cried. I was in shock and was super scared. When I went back to work, I sat in the back office and cried alone until the store closed. I was very thankful for my sweet co-worker Savannah (whose still a dear friend), who covered for me and let me be alone while she worked.
That night I had the craziest dreams of losing my hair, going through surgery, all the things a 22 year old doesn’t typically imagine.
The Next Day
The next day I went in for my biopsy and I was SO scared. They prescribed me a valium so I didn’t have to stress so much. That’s the only time in my life I’ve ever taken one! The procedure was relatively quick. They basically put a LONG needle/prong in me to grab the potentially cancerous tissue and send it off to pathology. I actually still have a little scar from this. But only I can notice, thankfully!
The radiologist’s office was amazing. They were kind, compassionate, and understanding. It’s actually quire rare to find that and I did feel lucky.
The Results
The Radiologist happened to know my father, and was able to call in a favor to rush the results to the pathology lab. That night they called and let me know that I actually DID NOT have breast cancer, rather an extremely rare disease called Fibromatosis (not to be confused with fibroids) that they had little-to-no knowledge about.
Simply put, Fibromatisis is a mass of cells (tumor) which can become malignant if not removed. With this disease, the way the cells look is extremely similar to cancerous cells. Hence why my doctor thought I had breast cancer. It’s also extremely rare to have it in the breast. Either way it was a HUGE sense of relief to know it wasn’t cancer. However, this isn’t even close to where things ended. You see, I didn’t change or become a different sort of person because I was told I could have had cancer, it was the entire experience I’m about to share with you that altered me forever.
From there, that’s when all the tests and scans started. Because the tumor could become malignant, it had to be removed. However, it was still a bit of a mystery to my physician team.
As relieved as I was that it wasn’t cancer, I had NO idea what I was in for. I needed to find a doctor who knew what to do, or was willing to learn and find out exactly what I needed.
Finding a doctor was actually difficult. Many didn’t want to learn about a disease they’d never heard of, and one was downright awful! She seriously lacked bedside manner to the point that I left her appointment crying.
Thankfully at the time my Uncle was a physician, and his coworker was a plastic surgeon with years of experience who was willing to learn about the tumor and do the surgery.
Pre-Surgery
Prior to surgery, I must have had a dozen different tests/scans. I would take my days off of work for medical exams. It’s probably noteworthy that I had a boss who was NOT understanding. She went to the extent of telling me I needed to schedule my surgery around someone else’s vacation. Not to mention none of my retail coworkers were kind or compassionate (except maybe 1 or 2) from what I was going through. They even told held a meeting to tell me that my health issues were affecting my work. Seriously?? It was retail! Talk about a traumatizing experience!
Anyways, I ended up having mostly the same tests/scans that a breast cancer patient would (radiation, PEM scans, blood work, you name it I had it), because of the nature of this tumor. The doctor I ended up going to was willing to learn and he also was willing to do surgery under my breast, so I wouldn’t have a massive scar showing for the rest of my life! The scar I have is discreet, although I couldn’t wear underwire bra’s or swimsuits for years (hits my scars).
Surgery
After a couple months of the tests and scans, we scheduled my surgery. The surgery was set to take place at the Virginia Piper Cancer Center in Scottsdale. It’s at the hospital, but was a much more serene area. My grandparents and parents both came. I love them.
For anyone whose been through this type of surgery, you know exactly what was next. Prior to the doctor opening me up, the nurse had to locate the tumor via mammogram (while I was awake) to determine the exact center and extract the correct margins to ensure the tumor has little to no chance of returning. Basically what they do is put a long needle in the center of the tumor (through your skin) so when they open you up, they get the right cells extracted.
At the young age of 22 a mammogram showed nothing, so they had to lay me down for an ultrasound. Ultrasounds are super non-invasive and very easy (same as what pregnant women get to see their babies)! But seriously I thought I was going to throw up. I had a pretty big fear of needles at that point, (which after all of this I no longer have) and I was wide awake waiting for surgery with this massive needle in my chest. Yeah it was crazy!
Anyways surgery was pretty quick after that… I can’t remember how long I was under for, but I was in significant pain for at least a week, wasn’t able to lift anything for 2 weeks and was off work for 10 days.
Post Surgery
After about 2 weeks passed, I went back to the radiologist for a follow up ultrasound to check on the area where the tumor was located and ensure everything was extracted properly. The ultrasound results were then sent over to my surgeon, who came back with another set of bad news. The margins from the tumor being removed were not clear enough. He wasn’t confident that the tumor wouldn’t come back unless he went in a second time.
So, I scheduled a second surgery for the following week and went through the pain and trauma all over again.
After the second surgery, things started to look up! The ultra sound showed clear margins and I was tumor free! Since I was so young, the chance of it coming back were about 70%. To make sure I stayed on top of it, I scheduled bi-annual appointments with the radiologist.
My radiologist has this amazing piece of technology called Sono-Cine. It basically takes a video of your insides (similar to ultra sound but much more detailed) and can detect tumorous cells extremely well. I would go in every 6 months for a Sono-Cine (aside from regular breast checks) for 5 years. After 5 years I went annually. Now I just go to my OBGYN (a new one) and she keeps an eye out.
Years Following
Years following my experience, I don’t feel bad for what I went through at all! In fact, I don’t think I would have had clarity on what I wanted out of life if I hadn’t gone through all of this. Two years after this, I followed my dreams of moving to NYC all by myself and life moved forward.
I wrote this story to challenge myself to be more of an open book with the hopes that all women reading this will start to do breast checks and be adamant about looking out for their health. Whether you have a lump or a strange dimple like I did, check in with your doctor! Be vigilant with your health.
Also – this is the very first time I’ve opened up about this topic publicly. In fact, even with friends, I rarely discuss what I actually went through. Usually I brush it off as an experience that was hard but shaped me. Which it did, but I want to be real and open with you.
I also wrote this as a challenge myself to be more open! Maybe this helps you get to know me a little more and understand who I am. Please don’t feel bad for me because of this experience. I want zero sympathy, and know others have gone through far worse than I have! In fact, sympathy is one of the reasons I haven’t opened up. I don’t need it and don’ want it! I’ve become who I am today because of this experience.
I’m thankful for being able to write this and appreciate you making it through this very long story! <3 XOXO
Joan says
I held my breath until the very end. Thank you for sharing your story in hopes of helping other women.