As if getting blind-sided by a cancer diagnosis in my early thirties wasn’t enough to wrap my head around, I most recently found out that I was misdiagnosed four years ago and have since been on the wrong treatment protocol! I’m sharing something so personal because I truly believe that the lifestyle changes I have implemented, the way I eat, and the the healing practices I have incorporated into my everyday life have played an enormous role in keeping me alive… and if I can help just one person with the information I am about to share, I am open and willing to be vulnerable. This was a tough pill to swallow and I am still processing, yet I have to remind myself constantly that I cannot live in the past and must keep moving forward.
I went from the shocking news of a diagnosis, straight into surgery a couple of days later. I had never even had surgery of any kind before, so to say I was overwhelmed is an understatement. It was after the first surgery, they discovered the cancer had spread to my lymph nodes….I woke up with drains attached to the side of my body which was totally unanticipated. In addition, after the initial surgery, I had to have two more surgeries for a total of three to assure they had gotten all of the cancer cells. It was like I could’t catch a break…three consecutive surgeries and the cancer had spread?! WHAT?!
Many people are unaware (as I was prior to my diagnosis) that there are many different types of breast cancer. Once my pathology tests had come back from the lab, I was diagnosed as having ER+ (estrogen positive) and HER2 positive breast cancer. Sounds and looks like another language, because it is. When one is diagnosed as having HER2 positive breast cancer the treatment protocol is very specific and different from the treatment protocol of a HER2 negative diagnosis. So being that I was diagnosed as both Estrogen positive and HER2 positive, I had a very specific regimen recommended to me.
I had a PET scan a month later, preceding all of the surgeries I underwent, which then revealed the cancer had metastasized (spread) to my bones….REALLY?! This made it an instant stage 4 diagnosis and my prognosis changed. I felt like I couldn’t catch a break to save my life and everything was spiraling out of control. What did I do to deserve this? What did all of this mean? Am I dying? Is this how the story ends? So many unanswered questions and all of the unknown had me absolutely terrified. With all of this trauma and information, I didn’t know what to do or where to turn to. So many “life and death” decisions had to be made..and quick. Several people kept telling me that I should pick up and move back East because “the best cancer center in the world” was out there. So I did….
I picked up my life and left everything familiar in the hopes of saving my life. I was accepted to the cancer center in NY, and started chemo immediately per the advice of my oncologist. Being I was HER2 positive and Estrogen positive, I was on a strict regimen of chemotherapy, Herceptin, and hormonal therapies, all of which were specific to my diagnosis (detailed info I know, but my sharing this info will all make sense shortly). I stayed on this treatment and would get scanned every few months and it appeared that everything was under control. Nothing was progressing and all seemed to be smooth sailing, although I was never deemed to be in “remission,” as this would indicate that there was no trace of cancer, and unfortunately this was never the case for me. I was never taken off of treatment, although my treatments would vary. I was on constant IV’s every few weeks for close to three years and I was monitored every few weeks via tumor markers, which are obtained though a specific blood draw.
Then, in the beginning of 2014, my markers slowly started to rise, indicating that there was perhaps new activity and within a couple of months, I could feel that in my same right breast, a new mass was starting to form. My treatment had to change and my oncologist put me on numerous HER2 specific drugs over the summer, which were newly FDA approved chemotherapies that were supposed to be the “latest and greatest.” However, my numbers continued to rise and during one appointment, I remember my oncologist telling me, “My drugs aren’t working.” Okayyyy??? What did this mean?? In my gut I felt like something was way off, and I had felt this way for over a year, I just didn’t know what it was. I could never really put my finger on it but I knew something wasn’t right. It was time to get in the driver’s seat and start listening to my intuition.. which led me to a doctor in Brooklyn, in order to get a second opinion.
The first thing this new Dr asked me was, “Why hasn’t this new mass been biopsied?” I didn’t even know how to answer his question… I’m not an oncologist. I just trusted that my oncologist knew what she was doing. He explained to me that the fact that I wasn’t responding to all of the new treatment I had been on, was a clear indication that I possibly had a different type of breast cancer. I was totally perplexed and confused. He went on to tell me that cancer changes and that even though my initial diagnosis was one particular type of cancer, this new tumor could be a totally different type cancer?! Although I was meeting this man for the first time, he made more sense to me than my oncologist had in a year. My Higher Self told me to trust this man so after a few more consultations with him, I let him biopsy me. All the while I was avoiding treatment at my hospital until the results came back and I had more clarity.
A week later he emailed me with the results, and he was spot on. The results came back that I was HER2 negative! As I mentioned earlier, this is a totally different type of cancer and needs to be treated as such. So essentially I was on all of the wrong treatment which is why I wasn’t responding to anything!! WTF!?! No wonder I had been so uneasy the past year…It was as if my body was sending me signals that something was terribly wrong… I swear, you can’t make this sh*t up. He also emailed the findings to the woman who had been my oncologist for the past three years and she never replied to him nor did she contact me to come in and reevaluate the situation. At this point I had lost all trust and faith in her anyhow, but the fact that she just disregarded such pertinent information was appalling to me to say the least. I felt like I had to start all over again…find a new oncologist, but this time someone who was a little more invested in my well being. As much as I wanted to stay in NY, as I had developed a home there, I decided to move back to Los Angeles to be closer to family and friends.
I moved home at the end of March this year and had a lot to do as soon as I arrived. I hit the ground running and started to look for a new oncologist, while tying to rearrange my life at the same time. I also had my eggs frozen as soon as I got home which was a crazy story in of itself (future post), so I felt super overwhelmed. Anyhow, after meeting with a few oncologists, I choose my current doctor who is at UCLA Medical Center. He was very matter of fact, made the most sense, was super proactive, and he came recommended from the doctor in Brooklyn who uncovered this whole misdiagnosis thing, so I trusted his opinion as he kind of spearheaded this whole shift of events. After a long reviewal my medical records and all of the drugs I had been on, he was just as perplexed as I was and said everything just wasn’t adding up. He ordered some extensive tests which included gathering a sample of my initial tumor which was removed over 4 years ago (who knew they keep tumors in paraben wax) along with a sample of the biopsy I had just had a few months prior in Brooklyn. He sent both samples to a master pathologist who then confirmed that I indeed was HER2 negative and on the wrong treatment for the past year, but also that I WAS NEVER HER2 POSITIVE TO BEGIN WITH…meaning I was misdiagnosed from day one, over four years ago! Holy sh*t! Are you freaking kidding me??! And as a result of the progression of the disease, I was told at this stage I am “incurable.” I literally just found out this crazy info a few months ago so it hasn’t quite settled in just yet. It still just seems all so surreal. Like were my results mixed up with someone else’s or was the original pathologist just having an off day which I would pay the price for over the course of the next few years? Only God knows.
So this leaves me in the present. I am currently on the correct drugs, and they seem to be working (thank you God). I am also working with my new oncologist, (who essentially uncovered what two major “top” hospitals could not uncover in 4 years within a matter of a week) a radiologist and a surgeon. Together they are working closely to determine what the next best course of action will be. It’s all up in the air, and I’m sure I will post more about all of this later on. As upsetting as all of this is, I have to remind myself daily that all things happen for a greater purpose and that I must keep moving forward. There’s nothing I can do to go back and change the hands of time. Maybe I needed to go through this to fuel me to do something much bigger than myself.
My point in sharing all of this with you is not for pity, but rather to encourage people to to be more proactive and involved in their care. Ask questions, research EVERYTHING, choose a doctor who resonates with your spirit, and most importantly, follow your instincts! Within all of us resides this same all-powerful life force and if we listen carefully, the answers are all there. Sometimes we make the mistake of glorifying doctors, when in reality, they are all human beings. Finding a great doctor isn’t always easy and I am a living testimony that sometimes you have to weed out the bad before finding the good (kinda like men…haha ;))
I don’t care what they call me on paper, whether it be “incurable” or “stage 4 cancer patient” …whatever! I believe God is bigger than ANY of this and I refuse to sit and wallow in it or accept it as my truth. We are ALL battling something whether it be an illness, depression, an addiction, a bad relationship…we all have our individual crosses to bear. The good news is, we get to choose how to live no matter what we are up against. As soon as I open my eyes every morning I give thanks. I am thankful that I can see, that I can breathe, that I can hear, that I can get out of bed, that I can walk, that I can talk, that I have the most amazing people in my life, that I can live. I believe, as a matter of fact I know, that faith above all else, my attitude and outlook on life, along with the daily practices I have incorporated into my day-to-day have given me life and will continue to do so. Can I getta Amen?! AMEN!
Your article was very informative!
I just had a lumpectomy about one week ago and from the original biopsy I am triple positive.
After the biopsy from my lumpectomy, my her 2 came back negative, 0. So, I am confused! As you said, it’s completely different treatment!
It makes me not trust the labs. I’m going to push for them to recheck the original biopsy and the tissue from the lumpectomy.
Thank you for sharing!
Great idea to get a second opinion. That’s the best decision you can make to be confident in your diagnosis and care. All the best to you on your healing journey.
You can get more than an Amen! We all love tou and are praying that you continue to spread love, joy but more importantly information for all those battling illnesses. ❤️
Love you too Mikko! Thank you so much. I feel like this is my purpose so I won’t stop XO
Thank you for sharing your story. I have a very close friend just diagnosed with stage three inflammatory breast cancer. She also has had issues with her oncologist. I will share your story and website with her. Wishing you a Very Happy Valentine’s Day!
Veronica F says
Thank you for sharing your testimony. I just found out this morning after a women’s wellness exam that I have a lump in my right breast. The Dr. quickly had me schedule an ultrasound for next week. Being in my early 30s as well wasn’t expecting this at all. I find my mind going all over the place already even before this appointment. I too am a woman of faith and found myself praying to God as soon as I drove out of the parking lot for Him to grant me Strength no matter the outcome. Thank you for reinforcing His Love for Us and for inspiring me to Keep the Faith! I truly Believe we are All here for a Greater Purpose and like you have Always felt the Need to Serve Others. My husband did tell me the same thing as you…to remain positive and the body will go where the mind leads! Stay strong & I will be praying for you.
God Bless You Always,
Thank you for for sharing and you will be in my prayers. I pray that the results come back benign. Regardless of the outcome however, as you mentioned, God has you in the palm of his hand and there is nothing that faith cannot conquer. If you ever need any information or resources please feel free to email me through the contact page and I would be more than happy to guide you in any way that I can. Sounds like you have great support system in your husband as well…what a blessing! You have the right mindset to overcome any obstacle. Sending love!
Mikko Boutte says
I’m speechless. You are a testimony and me and the kids love and wish you nothing but joy and happiness. I’m so glad I have the opportunity to actually know you
Awe Mikko… I am blessed to know you as well. Thank you for all of your support. Miss you guys.
Suzanne Thuotte says
Thank you for sharing your heart and journey with the world!
Love you and as always keeping you in prayer! There is power in the cross! ?
Would love to see you soon!
Thank you Suzanne for reading and for the love and support. He is my strength, my everything. I would love to see you as well. Sending my love.
Jim Atwell says
I am glad to see that you are doing better Steph. Big hugs to you.
Zinette Ghaemmaghami says
You absolutely moved my soul! Life is short no matter how healthy you are, it’s the way you choose to live each day! Thank you Steph for sharing yours with us! I pray for you and all others who have to take life one day at a time. Love you Zinette
I love you too Zinette.! Thank you for taking the time to read XO