In August 1989, I found a lump in my right breast while showering. I was 41. My partner Ed and I had just bought a house together. We had been dating for about six years, and our children were all just about grown. This wasn’t in our plans.
Within a few days, I saw my OB-GYN. He felt the lump and told me the next step was to make an appointment with a surgeon for a biopsy. He gave me the name of the surgical group he recommended and advised me to call right away and take the first appointment available.
Two weeks later, I went to the hospital for the procedure, accompanied by my mother. We didn’t know of any breast cancer in our family. I was positive this was a false alarm.
But, while the lump wasn’t anything, imaging tests helped my doctor determine the suspicious areas below the lump were cancerous. Soon after, I had a mastectomy.
Against three oncology recommendations, I chose not to do any chemotherapy. I believed the surgery was drastic enough. It was caught early, and I just wanted to get on with my life.
Times were different then. I put all my faith in my doctors. We didn’t have internet access, so I couldn’t look information up on Google.
That was 30 years ago. The introduction of technology and “Dr. Google” has changed how people access information on health conditions and treatments. Here’s how it affected my journey with breast cancer.
After my mastectomy, I recovered nicely. Ed and I got married seven months after my surgery, and life was good. But one morning in 1996, I noticed a fairly large lump above my right clavicle.
I saw my primary care doctor and received a needle biopsy with a surgeon the same week. Cancer cells. At this point, I certainly doubted my decision in 1989 to not go through with chemotherapy.
I didn’t do any research with my first and second diagnoses. Instead, I depended on my doctors for their opinions, recommendations, and information.
I felt comfortable following their lead. I don’t know if it was the era I was raised in or the way I was raised, but I put my total trust in them.
We got our first home computer in 1998, yet I still received all the information I felt I needed from my oncologist. I was lucky to have a good relationship with her.
I remember the conversation where she told me that my cancer had metastasized. She recommended aggressive chemo and hormone therapy. I felt I was in good hands.
I completed six months of chemo and 10 years of hormone therapy. Down the road, I began to do research, but I felt I was doing fine on my treatments and never questioned my commitment to taking them.
In March 2018, a biopsy showed that my breast cancer had metastasized to my bones and lungs. This time around, dealing with my diagnosis felt lonely.
I still have the same mindset when it comes to finding out information, and I have a medical team that I trust. But I needed something else.
Even though I’d never joined a support group for breast cancer, I was feeling a little out of control and thought I’d try to find something local to go to in person.
I didn’t find something local, but I found the Breast Cancer Healthline (BCH) app when searching online for stage IV support.
At first, I was reluctant to do more than “listen” on the app. I’m a worrier and always afraid I may say something wrong. I didn’t think that first-time cancer survivors would want to hear from someone who has dealt with it for 30 years — my multiple recurrences being their biggest fear.
But I soon found myself putting my toes in the water. The responses I received made it feel safe to talk. Besides helping myself, I realized that maybe I could help someone else out, too.
I’ve answered questions and talked to others about treatments, side effects, fears, feelings, and symptoms.
It’s a totally different experience reading and sharing with so many others going through some of the same situations. I have found hope through so many stories. Chatting can some days take me out of a real “funk.”
I don’t feel the need to be superwoman anymore and keep all my feelings inside. Many others understand exactly how I’m feeling.
The internet can be tricky. There’s so much information out there that can be positive and negative. We now know so much more about our conditions and treatments. We know what questions to ask. We now need to be our own healthcare advocates.
In the past, I relied on my family, friends, and medical team for support. I also had the tendency to go it alone, tough it out, and suffer in silence. But I don’t have to do that anymore. Talking to strangers through the app, who quickly feel like friends, makes this experience not so lonely.
If you’re going through a breast cancer diagnosis or scare, I hope you have a safe place to share your feelings and a medical team you trust.
Chris Shuey is retired and lives in the San Francisco Bay Area with her husband Ed. She’s loving life while spending time with her grandchildren.