What’s Changed during 17 Years with Metastatic Breast Cancer?

At 31 years old, Terlisa Sheppard was looking forward to making her two-year-old daughter, Alexis, a big sister. During her pregnancy, she complained about pain under her left arm and soon discovered a lump that continued to get bigger over time. Her obstetrician suspected her milk ducts were clogged, a common occurrence in later stages of pregnancy, but she continued to press her medical team to conduct more tests.

They eventually conducted a biopsy of the lump and Terlisa was shocked to discover she had Stage III breast cancer, which meant that she would have to deliver the baby at 8.5 months in order to begin treatment. Shortly after she safely gave birth to Alyah, Terlisa began her journey fighting against breast cancer.

After a year of treatment, Terlisa was cancer free and returned to normal life with her two young daughters. She routinely saw her oncologist for follow up scans, but nearly two years after her treatment had ended, Terlisa visited the doctor about pain in her abdomen. The results of the exam shocked her - Terlisa was diagnosed with metastatic breast cancer (MBC).

Terlisa’s situation is not uncommon, as approximately 30% of women diagnosed with early stage breast cancer will eventually see their cancer return as advanced or metastatic disease. Additionally, about 6-10% of newly diagnosed breast cancers are de novo metastatic, which is when the cancer has already metastasized at first diagnosis.

Nearly 17 years since her MBC diagnosis, Terlisa continues her fight against this disease with her two daughters, Alyah and Alexis, by her side.

Describe your initial thoughts after being diagnosed with metastatic breast cancer (MBC).

Terlisa: I was devastated. I battled Stage III breast cancer three years prior, and I had no evidence of disease for two years. I was diligent about my follow up visits to my oncologist and I made sure to tell him about anything I was feeling. But I learned that a diagnosis of MBC does not mean you did anything wrong and that I should not blame myself for the cancer spreading or returning. When my oncologist told me the cancer had returned, and was metastatic, I didn’t know anything about MBC, but I knew the prognosis was not good. I had two young girls who needed me and I wanted to see them grow up.

How has your outlook changed over the years? What do you do differently now?

Terlisa: When I was diagnosed with MBC, I was told to quit working and get my life in order because my cancer was terminal. It had progressed to my bones, lungs and liver. But I knew I had to fight and I have been fighting ever since. Now, I still fight, but I also make sure I squeeze every single thing I can out of every single day. Whether it’s soaking up the sun at the beach, or spending time with my daughters, I’m grateful every day. In fact, I’m busier now than I ever have been. I’m very involved in advocacy for MBC and volunteer at my church and with students in my local area.

How has MBC awareness changed since you were diagnosed?

Terlisa: When I was first diagnosed, there were virtually no organizations that included information about MBC in their conferences, and local support groups only focused on early-stage breast cancer. It was scary during that time, but I also remember feeling that I needed to help change the conversation. MBC patients have different needs than other breast cancer patients. We need information and support that is specific to our journey. Thankfully, things are different today. There are several organizations dedicated to MBC and there are conferences that solely focus on the disease. Breast Cancer Awareness Month in October has evolved to be more inclusive of the disease too. The Beyond Pink: Sharing Our Metastatic Breast Cancer Story program, which focuses on the unique needs of MBC patients, is one example of the remarkable change over the last 17 years. But there is still more work to be done to increase disease awareness.

What advocacy work are you involved with?

Terlisa: Recently, I’ve been involved in Living Beyond Breast Cancer’s Hear My Voice program, which provides the tools and training to help people living with MBC make a difference in their physical and online communities. This program can be utilized in many different ways: trained volunteers can talk to people at local support group meetings or communicate online with others who may be newly diagnosed and having a bad day. Personally, there are times I find myself up at 1 AM answering direct messages on Twitter or Facebook because someone out there – whether they be newly diagnosed or have had MBC for two years - has asked about my experience.

What advice would you give newly diagnosed MBC patients?

Terlisa: I tell anyone who will listen to try their best to have a positive attitude. I know it sounds cliché, and I’m not suggesting that a positive attitude will treat the cancer, but I believe a positive attitude has gotten me a long way. Even when I was at my sickest, I would get up, get dressed and put makeup on to feel better. When I looked good, I felt better. I would also stress healthy living. I tell patients to keep the lines of communication with your medical team open. Finally, just know that you’re not alone. It may feel like it at times, but there are others out there who you can connect with that have had similar experiences and are open to sharing their thoughts. The MBC community is incredible - I have never seen a group of people so willing to help others in need. So just remember that we’re here for you.

Hear My Voice is a program from Living Beyond Breast Cancer To learn more about MBC, or for additional resources about MBC, please visit LifeBeyondPink.com