Be informed to live longer

In 2016, I started to have back pain that made me wince as I walked up the flight of stairs to my bedroom. I went to my orthopedic doctor as I believed the pain was related to my scoliosis. I am an engineer and am a life member of the Society of Women Engineers. I have passion for science and enjoy looking at data. Indeed, I made graphs of my blood counts during my chemotherapy treatment when I had Stage II breast cancer 12 years prior. So, after multiple doctors and almost six months of back pain, when one doctor suggested a bone scan to check for cancer based on my medical history, I did not think recurrence was possible. I was wrong.

Breast cancer had recurred in my bones.

My mom had estrogen receptor-negative breast cancer when she was in her forties. (At that time there was no test for human epidermal growth factor receptor 2 (HER2) status.) Today, my mom is a healthy 85-year-old. I started annual mammograms when I was 35 years old due to this family history. I had early-stage estrogen receptor-positive breast cancer when I was 36. During my early-stage experience, I sought out support groups and attended many conferences to learn about breast cancer in young women. I duly completed all the recommended treatments for my breast cancer: a mastectomy, chemotherapy, radiation, reconstruction, and five years of tamoxifen. I saw the oncologist regularly for 10 years, and they told me I did not need to come back. Despite our different breast cancer diagnoses, I thought I would have my mother’s healthy aging experience. I thought I was cured.

Twelve years after my first experience with breast cancer, I was diagnosed with Stage IV breast cancer. That is when I learned that some studies show that on average, 30% of people impacted with early-stage breast cancer will eventually become metastatic at some time in their life. I had thought I was very knowledgeable about breast cancer. I had gone to many conferences in the pursuit of the best and the latest information, and I had been told essentially, “don’t worry about recurrence.” Instead, they should have taught me the signs and symptoms to be vigilant about, and when I should contact an oncologist. If they had, I, as a woman who had avidly sought out breast cancer information, would not have spent six months seeking a diagnosis from orthopedic doctors.

Immediately, I started going to metastatic breast cancer support groups. I met many people who developed metastatic breast cancer 10, 20, or more years after early-stage breast cancer treatment. Like me, almost all thought they were cured after 10 years. I started doing some research and found an article from the Journal of the National Cancer Institute (Volume 114, Issue 3, March 2022) called “The Incidence of Breast Cancer Recurrence 10-32 Years.”  One of the observations indicates that having the traits of a larger early-stage hormone receptor-positive breast cancer is associated with a greater risk for metastatic recurrence after 10 years without evidence of the disease. Subtype matters when it comes to if and when recurrences happen.

I believe my initial treatment gave me an extra 12 years before it spread, and all the advancements for early-stage treatment worked.  Maybe there are many doctors who do not realize the risk of recurrence. Last year, I was shocked when I was at a conference in which someone asked about recurrence, and the doctor told them, “Don’t stress out and worry about it.” At about the same time, I discovered that one of the groups I attend separates the early-stage people from the metastatic people as it causes stress for the early-stage people. Wouldn’t it be wiser to inform early-stage people? Therefore, I am writing this blog.

You know more about your body than anyone else does. You have already proven you are strong because you have undergone cancer treatment. You are in charge of the doctors on your medical team. Do not be afraid to inquire about your risk based on your breast cancer type, stage of cancer, and your treatments.  Talk to your medical team about the signs and symptoms to watch out for, and when you should contact them.

As the saying goes, “You don’t need to borrow trouble.”  But if trouble finds you, you can be prepared. Be informed, and you will make better choices.

I have been metastatic for over 6 years now.  I am riding the rollercoaster of scan, treat, repeat and have been on three different treatments. I am an advocate for research. Most importantly, I am enjoying life. I have taken many trips with my husband since I became metastatic and plan to take many more. We went back to the United Kingdom where we lived for a few years and took a side trip to France. I still have two travel items left on my bucket list. The Northern Lights eluded me on a trip to Iceland, but I will try again. Also, I want to stay on a hut over the water where I can get lost looking at peaceful turquoise waters. Traveling has made me grow and change the way I see the world and my life. It allows me to engage with different people, to embrace adventures as they come, and to share new and meaningful experiences with friends and loved ones.