The sad reality is that at some point in our lives, every one of us will be affected by a breast cancer diagnosis be it by a family member, friend, coworker or even a stranger. This story could be your wake up call. What are you going to do with it?

MY STORY:

I was diagnosed in November 2005 with Stage 4 Metastatic Breast Cancer. I was given one year to live. I was only 30 years old. I was assured several times by my doctors that I was too young to have breast cancer. Guess what? I wasn't! I am writing this not only to share my story with you, but also in the hope that I might be able to help change the way the medical profession, insurance companies and people in general view breast cancer. It is one of my many goals to change the medical protocol for young women, allowing for possible early detection, diagnosis and treatment.

People generally think that breast cancer is a disease that affects only mom or grandma. Not so. Aggressive and life threatening breast cancers are infecting the younger generations, myself included. For these reasons, we have a lower survival rate. Younger women also have many more years to endure likely reoccurrences accompanied by side effects. A Stage 4 Metastatic (which means life threatening) diagnosis means cancer cells have spread outside of the localized area (the breast), beyond the lymph nodes and into the body’s bloodstream. From there the cancer cells can attach, host, and attack any part of the body at any time by invading bones or organs or both. Who is really educated on this subject? More importantly, who is paying attention? Sadly, not many. This misguided view of breast cancer drastically affected my battle with the disease, and I am not the first to be overlooked in such a manner. That is why I feel compelled to do my part to help deliver the message about breast cancer diagnosis/misdiagnosis in younger women. In my case, a one month earlier detection could have made a life changing/saving difference.

On Saturday evening, October 15, 2005, a gentleman I was dating at the time found a lump in my right breast. He immediately brought it to my attention and expressed his concern that I see a doctor right away. I have to admit I was surprised not just by his discovery, but by the fact that I had not discovered it before. For the rest of the weekend I couldn’t forget about the lump. I found myself constantly rubbing, mashing, and massaging my breast trying to figure out how it's exact size. I started to worry about the possibilities of what it could be.

On Monday I called the doctor’s office that was listed on my insurance card. Because I was a new patient (no records of prior illness because of good health) they couldn’t get me in right away, so my appointment was set five days later. After my doctor examined me he had a look of uncertainty that I found unsettling. He actually asked if I had been bitten on my breast. After somewhat amazedly confirming that he was referring to a sexual bite, I answered him with a quick NO. He then explained that some women get what is called Mastitis, which typically occurs in breast-feeding mothers. He said that while rare, some non-mothers do get Mastitis. I asked him about the possibility of this being breast cancer. He said I was too young and healthy looking and added that breast cancer is generally not painful or sensitive to the touch like what I was experiencing. He also stated that my mass did not fit the profile as it was not a defined lump. Naturally I agreed because I was taking good care of myself, eating healthfully, and working out. Still uncertain about my condition he prescribed an antibiotic and Vicodin for the pain, telling me to call him in a week if I didn’t feel better.

A week later I didn’t feel any better. I was running a low-grade fever every day at work and having hot flashes (I didn’t know what those were at the time but certainly do now!) I was having EXTREME pain in my right breast and surrounding area, and was starting to notice my nipple retracting and inverting. That was unsettling. I had to show this to my doctor. Upon my return, he examined me again still believing what I had was Mastitis. I told him that it was strange but in those 10 days I was certain the lump had grown. He didn’t seem to agree after examining it once more but recommended I see this cancer surgeon who had operated on his father. He told me that he trusted this man with his father’s life when he had cancer and was certain that I would be in good hands. He then emailed the cancer surgeon explaining my situation and that I should see him right away. This began my nightmare.

By the time I got in to see the surgeon my symptoms had worsened. I asked my mom to drive in from out of town to attend this appointment with me, as I had faced the prior ones alone. I could tell she too was really starting to worry about the lump, regardless of the message that my primary care doctor was sending that I was too young to have breast cancer. After measuring my lump at 4 centimeters, the surgeon said exactly the same thing and sent me home with more antibiotics and Vicodin. I ended up going home with three different rounds of antibiotics and no tests. I could feel this so called infection growing inside of me and continued to express my concern to my doctors. I felt like they were not listening to me, but because they didn’t seem to be worried I kept telling myself that it was nothing serious. So wrong.

After returning once more to see my surgeon with no improvement, he scheduled an ultra sound. A large, inflamed mass was identified. The head of radiology came into my room to double check the tech’s results. He then asked me to get dressed and to come into his office for discussion. My nerves were twisted. He showed me my x-rays on the light boards and explained that though the mass was rather large, 4.6 centimeters large, and that it looked like I had a lot of inflammation, he felt strongly that it looked like a breast infection. Wrong again! This was doctor number three.

I finally had an incisional biopsy (that I felt I really had to push for), yet even in the recovery room I was told again by my surgeon that he doubted it was breast cancer. He believed it was just some kind of rare, strange, unusual breast infection. I was also told that the lab was probably going to take some time in getting back to me, because if he didn’t know what it was then the lab would probably not be able to identify it immediately either. Another incorrect assumption. Much to my surprise, two days later on my way to work I received a phone call from my doctor’s office asking me to come in at an hour's notice. She briefly explained that some of my test results had come back and my doctor wanted to see me. I phoned my mom excitedly believing that the NEGATIVE cancer results were already back and that it was indeed just what all of my doctors had thought… a breast infection.

On Tuesday, November 22, 2005 while sitting alone, I was told that I had a very aggressive kind of breast cancer. I went into shock! I immediately thought I was going to die. My cancer surgeon read from my pathology report these 20 letter words that I have never heard of nor could I comprehend in those moments. I knew that by the look in his eyes what he was reading to me was very serious. If I had known that I was to receive this kind of results I would have not gone to this appointment alone, but I was not prepared by anyone for this possibility. My doctor asked me if there was anyone I needed to call. I said, "I need YOU to call my mom at work and tell her what you have just told me because I can't say these words to her". At that moment I couldn't even say the word "cancer" much less tell someone that I had cancer. Still in shock, I remained composed until I heard my mom’s voice. I could not hold back anymore and the tears started pouring. I told her to sit down and my doctor was going to tell her something. I could feel her heart pounding through the phone with mine. I felt her panic. He began to tell her of my diagnosis. She cried out in tears. Her heart was broken. That is when I began to feel numb. My mom hung up and my doctor asked if there was anyone else to call. After experiencing his cold bed-side manner (time and time again), and how he handled the call to my mom, I decided that it was best for me to handle the call to the man I had been dating who would become my boyfriend. My mom said she would call my dad and the rest of the family in Texas while driving my way. My surgeon walked me back to the front reception area and told his assistant that she needed to call and get me in for a Bone Scan, CT/PET scan, chest X-Rays, Blood work and a full body MRI. Hearing my surgeon use the word “stat” gave me the shakes. The reality of my situation flooded me with anxiety. I wanted to cry so badly but felt I couldn’t until I walked myself to my car and then it would be ok to let go. That’s exactly what I did.

Sitting in my car in the parking garage, I called my boyfriend and asked him to please meet me at my apartment ASAP. He knew. He could hear it in my voice. I tried to stay strong because I knew I had to somehow drive myself home in one piece after hearing this life threatening diagnosis. Driving back to my apartment alone was extremely challenging. My vision was blurred by the tears that constantly filled my eyes. Once I arrived, I fell on my couch and completely fell apart. I sat there in the dark and cried with amazement that something like this could happen to me. I say this because all I knew of breast cancer was that it happened to OLDER women. NOT women in their thirties. I had never heard of someone my age getting breast cancer. The more I thought about what I was told, the harder I cried. My stomach was turned inside out. Twenty minutes later my boyfriend walked in, took one look at me, began crying, and held me. He held me for what seemed like eternity. He didn’t want to let go. I told him of my diagnosis and that I would completely understand if he needed to leave. Leave ME that is. I gave him that option because I knew this was something he did not sign up for (of course nor did I). This was my battle to fight and I already knew that it would be a heartbreaking one to witness. Completely devoted, he stayed.

Upon my mom’s arrival at my apartment she walked in and hugged my so tightly as to never let go again. She cried out in sorrow, “not my angel baby, please not her, take me instead, please take me instead, this is not how it is supposed to happen”. I have never seen nor heard my mom cry as she did that day. My dad and grandma flew in from Texas that night sharing the same emotions and shedding the same tears.

Less than 48 hours away was Thanksgiving Day. I told my boyfriend (who informed my friends) as well as my family that I did not want ANY cancer discussion. I wanted the day to be festive and fun, not depressing with sadness and tears. Besides, my Dallas Cowboys were playing that day and that game is something me and my family look forward to every year. And it was as I wished.

Friday, the day after Thanksgiving, it was time to go back to work. Not to my current job but to the hospital. I had my first CT/PET scan. The following Monday I was scheduled for a bone scan. Tuesday I had extensive blood work and an appointment with the gynecologist due to 2 weeks of irregular bleeding. The first thought by all was my cancer had spread to my ovaries. A vaginal ultrasound proved negative for cancer. Thank goodness! Wednesday I had a 2 hour full body MRI. All I can say is MISERY!! Especially when you are closter phobic! You bet cha I pushed that panic button! It was all I could do to get through that scan for that long. It was also a day of results from my oncologist. Sitting in my oncologist office with my boyfriend, family, and best friend present, I was told there was a spinal lesion on my T12 vertebrae. If in fact this proved to be cancer I was given one year to live (if I was lucky he said) because of how aggressively it was spreading. My oncologist then scheduled a spinal bone biopsy. My nerves were on edge. I needed a second opinion ASAP!

After being referred to a highly credible breast cancer surgeon (by my boss’s wife who had a double mastectomy due to breast cancer) at a leading breast cancer center I was immediately scheduled for multidisciplinary consultations. After three frustrating days of trying to find out my spinal bone biopsy results from my first oncologist, the current nurse practitioner said that she would call over and get the results for me. She did just that! Unfortunately, she had to be the bearer of bad news. I was upgraded to Stage 4 Metastatic. The cancer had spread beyond my breast into my lymph nodes and spine. The visions that invaded my mind were so horrific! Again, I felt sick to my stomach. Now I am really going to die. I thought about getting my affairs in order and writing a will. After all, this was the clear message that I was receiving from the doctors. Then I said to myself, wait a minute, I am only thirty years old! This can’t be happening. Sadly, it was. It seemed bad news was never-ending that day.

Within three weeks I started chemotherapy. By that time my lump measured over 8 centimeters. My tumors were a constant reminder of the cancer that had invaded my body. For that reason, I welcomed the chemo. Prior to starting chemo, I had a direct line portocath inserted into my left arm. Thank goodness again because my hands and arms were bruised and my veins collapsed and ripped from constant attempts and insertions of IV and shot needles. Chemo treatments consisted of six hour infusions, three weeks apart, for six months. First week post treatment I developed a neutropenic fever. I was rushed to the emergency room where I spent 10 hours experiencing hallucinations, 104 fever, and excruciating body and bone pain. The kind of bone and joint pain I felt was absolutely UNBEARABLE! I will just say this: I was in SO MUCH PAIN that I did not want to be alive experiencing it any further. I was ready to “check out". My white blood cells had dropped to 0.0! I had NO protection to fight any germs, yet, I was in the ER for 10 hours with nothing but sick people. The ER doctors said they had never seen anyone’s white blood cells bottom out to 0 the way mine did and especially at the rate in how fast they dropped. I was admitted to a high level quarantined room for the next three days over Christmas. Only my mom and boyfriend could visit me. No other visitors or any deliveries (flowers/balloons, etc.) were allowed in my room because of possible germ transmission. Due to my white blood cell count bottoming out, it was ordered that everything and everyone who was allowed in my room was sterile. Being quarantined for seven days following future infusions was now mandatory. Because of severe dehydration due to extreme diarrhea and vomiting, Hydration treatments were also added to my regimen. 

Some of the intolerable side effects of chemo included nausea, vomiting, lack of appetite, severe diarrhea, body cramps and Edema in my legs in which I had to live in compression tights for 3 months. That was a sexy time of my life! Loss of memory from chemo brain was the most frustrating and embarrassing side effect. By this time, I had dropped 20 pounds. I couldn’t taste anything for the thick coating of toxins on my tongue. I developed hemorrhoids from the severe constipation due to the Vicodin for pain management. As an added bonus, the chemo forced my body into early menopause. With this came blazing hot flashes, drenching night sweats, and grave insomnia. I was told that I could never have children because the presence of estrogen in my body would feed my cancer. My doctors warned me that if I did get pregnant while under going treatment, either decision made, I would probably die. I was emotionally devastated. I wondered how people could live through this. I now know first hand it is truly mind over matter.

After I finished chemo I had 2 surgeries. My surgeon tried to remove all of the cancer the first go around but because of the large size of the tumor none of my margins were clear. So, they had to go back in again for another try exactly two weeks later. When I removed the bandages the second time I was left with only a nipple on my right side. My breast surgeon had scraped all the way down to the chest wall removing all the breast tissue possible. At least they saved my nipple and did what is called “nipple sparing”. Because of this I had what is termed a partial mastectomy followed by lots of physical therapy and Radiation therapy treatments. I had four places radiated: my breast, collarbone, lymph nodes and spine. And boy did I burn! Badly!!

Today, I am classified as NED: No Evidence of Disease. I very surprisingly got my period back after being in menopause for almost 2 ½ years. I have now switched from being on an Aromatase Inhibitor, Femara back to Tamoxifen which is a drug for premenopausal women. I feel it is critical I share my experiences and knowledge with as many other daughters, sisters and girlfriends who potentially be diagnosed with breast cancer in the future. Cancer knows no color, age, or sex. It has no boundaries. It doesn’t care how big or small your boobs are. This happened to me, and it can happen to anyone. It has changed my life forever. I have been told by my doctors it is not a question of if the cancer reoccurs, it is a question of HOW, WHEN, and WHERE it reoccurs. In most cases, they are right because sadly I continue to see this happening all too much to my friends and peers.

From my journey with Metastatic breast cancer, me, my mom and my friends (who I consider family) have all joined together as a team and started the Stefanie LaRue Advocacy Movement. SLAM boldly educates young women in their teens, twenties and thirties that they too can get breast cancer even with no family history. Younger women are often misdiagnosed because they are told they are "too young and don't fit the profile" which can lead to a later staging of diagnosis that in some cases is aggressive and terminal. We teach the importance of how and why it is so critical for young women to be their own advocate. SLAM focuses on breast cancer prevention and education and encourages healthy life style choices that include diet, nutrition and an eco friendly environment.

It is my highest hope that because I have chosen to share my story with the world other young women will learn a potentially life saving lesson that they too are at risk for breast cancer. Cancer does NOT discriminate! I only wish I would have known that I could get it at my young age even with no family history BEFORE it happened to me. Please, do your part now and help pass this urgent message along.

Thank you kindly,

Stefanie LaRue

MY STATS:
Currently 33 years of age
DX 11/22/05 at age 30
Stage 4 Metastatic
Her2 negative
ER positive
PR negative
8+ cm primary tumor
Neoadjuvant chemo: TAC (Taxotere, Adriomysin, Cytoxin)
2 right lumpectomies
20 lymph nodes removed, 4 positive
7 weeks radiation

Still patiently waiting for Reconstruction