By Susan Rahn, as told to Lauren Evoy Davis
I was diagnosed with metastatic breast cancer in August 2013. It was exactly 9 months after a clear mammogram. I didn’t find a lump or even suspect that I had breast cancer. Back pain sent me to the doctor and eventually led to my shocking diagnosis. Thanks to my primary care physician not assuming I was OK when a urinary tract infection (UTI) was ruled out, she ordered more tests that uncovered the source of my pain. I had a significantly sized tumor in my thoracic spine as well as lesions in my ribs. Testing ultimately confirmed it was breast cancer that had metastasized to these bones.
No Evidence of Disease
My initial treatment was radiation to my spine, followed by an aromatase inhibitor. It’s a drug that stops your body from making estrogen, which fuels cancer cell growth in some types of cancer. That was short-lived, as the side effects were unmanageable. My doctor switched me to another aromatase inhibitor for women who’ve gone through menopause. I took that for 18 months, then stopped to have a lumpectomy (removal of cancerous breast tissue). I was then given my current treatment: Faslodex and Ibrance. This combination -- along with a lot of luck -- has kept me with no evidence of disease for almost 7 years. Eventually, I had my ovaries removed because the cancer I have is fueled by estrogen.
How I Advocate for Myself
Advocacy can mean different things to different people. I advocate for myself by staying informed of the latest advancements in treatment options and I go over every test, scan, and lab and ask questions even if I am told everything is fine. Conferences connect me with medical professionals who speak on a variety of helpful subjects.
Most importantly, I communicate things that have changed to my care team since previous appointments -- even if I don’t think it is anything important. Open communication with my care team is very important to me. Over time I learned it’s OK to ask your doctors “why?” instead of following blindly. It’s OK to ask for clarification when I don’t understand something.
Managing Side Effects With Exercise
I had a difficult time with the first two drugs I was on. My joints and bones felt stiff and painful. The one thing that has helped is to keep moving. I participated in a program called Livestrong through my local YMCA. It’s a 12-week program designed to promote physical activity in people diagnosed with cancer. When it was first suggested to me, I was shocked. It already hurt to move and now I’m supposed to move more? But it taught me that the more active I am, the less pain I am in. Now I do exercises at home to stay flexible.
Finding Mental Health Resources and Outlets
What I didn’t know then but learned over time is that although doctors are focused on treating the illness, mental health cannot be ignored. I have an incredible palliative care team that I see monthly. I see a therapist through palliative care, who specializes in patients with advanced illnesses. She has helped me manage survivor guilt and being stuck at home during the height of COVID-19. Writing has helped tremendously. I started a blog a year after I was diagnosed. Whether I’m sharing health updates, accomplishments, or advocacy events, writing helps clear the thoughts that sometimes keep me up at night. It's been a great tool over the years.
Connecting With People Who Get It
There are plenty of social media groups, specifically closed groups for people with metastatic breast cancer. I joined a few after I was first diagnosed, but they weren’t for me. Now, almost 9 years later, I would recommend organizations like Living Beyond Breast Cancer. Their website has resources for all people with breast cancer -- men and women -- who are in and out of treatment. They offer one-on-one peer support through their support line. You can be matched with another person with a similar diagnosis or they can help you find resources in your area. I cannot emphasize enough how helpful it is to talk to someone who knows exactly what you’re going through. Unless you’re knee deep in it, it is difficult to relate to what we experience as a metastatic patient.
I knew absolutely nothing about metastatic breast cancer when I first heard my doctor say those words. If I could go back and tell the newly diagnosed me what I know now, I would tell her she’s not alone, even though it may seem like she is. I would tell her that there are a lot of people like me and that I should connect with them. I am grateful for the countless individuals I have met over the years. I became very close to a few and even traveled (pre-pandemic) with people I met along the way. Each person I have crossed paths with has taught me something, even if I didn’t realize it at the time.
Making Time to Rest
A lot of people living with metastatic breast cancer don’t look sick. I often have to remind family and friends that I am not always 100% and need to take time to rest. Giving myself a bit of grace makes life easier. It's OK to turn down invitations or decline an outing. Those who matter will understand. I realize that living with my condition for 9 years is a gift. I don’t take it for granted and I make myself available for anyone who needs advice or who needs to vent. I strive to be the person I wish I could have gone to that first year.
Susan Rahn, 51; Rochester, NY.
Breastcancer.org: “Aromatase Inhibitors.”
Medline Plus: “Exemestane.”
Mayo Clinic: “Lumpectomy.”