My life was good in 2017. I was married to the perfect man, enjoyed time with family and a few close friends, fly-fished often, and had my dream job working in the world of oncology. Early November I had my annual (3D) mammogram and doctor’s visit. All was good.
Just 3 weeks after my annual exam in November 2017 I found a lump during my monthly self-check. Although I had lumps prior, this one felt different….the size of a pea and harder than the past. Knowing my parents both had survived cancer, my doctor fast-tracked me in to see her again. The next week was a blur – ultrasound, another mammogram, biopsy, followed by the call from a nurse saying those 3 words nobody ever wants to hear….”You have cancer”. That day changed my life, but little did I know the gift it was to be. They estimated my tumor to be -5 cm in diameter on December 10. I had HR+ HER2- invasive ductal carcinoma. I’m in healthcare and around oncology clinics daily – I was confident I could navigate my journey. I was wrong.
Before I start telling the rest of my story I want to say EVERY journey is different. You will have difficult days and many challenges thrown at you – these will most likely NOT be the same as mine or any other patient. I share my story to help others understand the importance of self-advocacy, patient choice and building a relationship with your doctor.
My next step was to see a medical oncologist, who said promptly, “We will do a lumpectomy, radiation and tamoxifen”. I’m pretty sure I laughed and said “WE?? No, WE won’t be doing that”. (This should have been my sign to find a new oncologist.) I had done my research and, combined with my family history and my tendency to worry about things too much, I had already made my decision. It was MY decision to make, my oncologist’s role was to provide me with my options, which never happened.
35 days after my MRI I opted for a double mastectomy direct to implant. My tumor had grown to 2.5 cm (which I learned was not normal) and they found minimal cells in my sentinel node. My oncologist said I would not benefit from radiation or chemo, but must start tamoxifen and be on it for 7 – 10 years.
6 months on tamoxifen was enough for me – side effects were bone/joint pain, fogginess and weight gain. I did my research, removed my ovaries to throw myself into menopause and started an aromatase inhibitor. In this same surgery I had my plastic surgeon do some “tweaks” to my new breasts. Around that same time my implants were recalled due to some women developing breast implant-associated anaplastic large cell lymphoma. This is rare, but something new to watch. I had one more surgery (3 total) on my breasts since then and there are no flags as to lymphoma risk. My new medication caused osteopenia and I have now added an infusion every 6 months.
Good news is I had a breast cancer index ran on my tissue which shows I would only benefit from the aromatase inhibitor for 5 years, which will be 2023….and the countdown begins.
The day I fired my medical oncologist I sat with a dear friend during one of her chemo sessions. This sweet man came in to check on her – he was kind, thoughtful and really listened to my friend’s concerns. This was truly an “A-HA” moment for me. What was I doing with a doctor who was on her own agenda and showed zero empathy?!? I never looked back.
My advice to every new patient:
- ALWAYS get a second opinion – any great doctor will welcome this.
- Have a relationship with your oncologist – they will be your coach through the years.
- Assemble an army of family and friends to help – and don’t be afraid to ask for help!
I learned these lessons the hard way and I should have known better. My story is unique to me. Cancer did not beat me and does not define me, but because of cancer I am now better at my job, I have eliminated negative from my life, I have dedicated time to help others, and I have a deeper relationship with my husband and loved ones.