Connecting with others who have metastatic breast cancer so ‘We don’t have to walk alone’
Stage IV breast cancer is a four-word diagnosis no one is prepared to hear. When I received the news, I panicked. I felt as though I couldn’t breathe. Later, I realized that I was, in fact, still alive and wasting what precious life I had left, incapacitated with fear. I was still alive, and as long as I was alive, I needed to live. I just had to figure out how to do that with more than 10 metastatic breast cancer tumors, some as large as lemons, growing in my liver plus a spot on my spine.
Once I made the decision to press on with life, I flipped through the Rolodex of previous experiences in my brain to find a memory that would fit this situation and guide me. I needed to turn off the flashing neon signs in my consciousness that said “YOU’RE ALMOST DEAD! YOUR LIFE IS OVER.” Nothing was there: No previous experience existed in my memory that could guide me to face my own mortality comfortably and continue living. I was 55 years old. My people lived to be 95, 104. Dying now wasn’t possible for me. It did not compute.
Since I had no previous experience to draw from to help me deal with this one, I finally realized I needed to find other people in my situation. I needed to know how they faced their own mortality and continued to live and live well with death looming so close.
I thought of a local stage IV woman, Pat, I’d met through a breast cancer group I attended after my first stage III diagnosis. She was a little older than me, and I remembered she’d said she’d been in remission from stage-four breast cancer for 5 years! I wanted to talk to her, because if this disease was incurable, 5 years with no sign of the disease sounded pretty good. I also remembered that she was HER2-positive, like me. I called her and we talked. Just talking to her helped calm me. I was no longer alone. Pat was walking the same path I was, and she was 5 years ahead of me. We remain in touch.
A few months later, I reached out to a local woman, younger this time, named Rachel, who’d posted to our local breast cancer group that she’d just been diagnosed as stage IV de novo, meaning she had never been diagnosed with early-stage breast cancer, and she was scared. This time, I was able to pass on some of what I’d learned on my journey so far: Yes, doctors considered stage IV incurable, but people do have periods where the cancer doesn’t grow or spread, or where it disappears completely, and some can live well with it for years. Rachel and I became friends, and her path has been rougher than mine, so far. But she tells me that I’ve helped her. She has helped me, too. It’s good to walk any path with a friend beside you.
And therein lies the key. The value in connecting with other stage IV people is that we don’t have to walk alone. Stage IV breast cancer is a trip nobody chooses, but we have no choice. We’re on that trip, so we have to travel it the best way we can.
Rachel sent me a link over the July 4 weekend last year to apply to become a Living Beyond Breast Cancer Hear My Voice metastatic breast cancer advocate. The deadline was July 5. I filled out the form and sent it in. I was accepted to the program and attended training at LBBC’s Memphis conference in October 2017, and what a wonderful experience it was. My roommate Sharon was HER2-positive, too. We had lots to talk about, and we stay in touch now. In fact, I keep in touch with a core of women that I met at the conference.
In addition to the few stage IV women that I know locally and the ones I met at the LBBC conference, I belong to several stage IV Facebook pages with members from around the world. Besides not feeling alone, knowing other stage IV people (I’m careful to say “people” because men get breast cancer, too) provides me with important information. I stay informed of the latest treatments for my type of breast cancer, and I have people who understand what I’m going through readily available when I bump into a weird symptom or side effect. I can post to one of the Facebook pages, even in the middle of the night (since membership is worldwide, we cover all time zones), and I can see if anyone else has experienced anything similar. Then I can assuage my anxiety until I can call the doctor.
No one chooses stage IV breast cancer, but finding others to hold hands with on the journey makes it easier.
Ellen Broglio, 58, of Joplin, Missouri, writes about the importance of getting support and information from others who can relate to her struggle. She is a graduate of LBBC's Hear My Voice Advocate program.