What You Need to Know About MBC

39-year old Rebecca Adam was no stranger to breast cancer, even prior to her own diagnosis.  She had a strong paternal history- her grandmother and her grandmother’s three sisters had Metastatic Breast Cancer, 3 of the 4 passing before age 50. In 2008, Rebecca developed mastitis in both breasts.  Mastitis is a breast inflammation usually caused by infection.  Since she was never a lactating mother, this was considered abnormal. Because of the mastitis and her family history, she was monitored closely for more than two years, receiving mammograms every six months.  In February 2011, Rebecca was given a clean bill of health and decided she wanted to try to start a family.

Rebecca advocating for MBC awareness

Rebecca and her husband were thrilled to learn that they were expecting a child on Christmas Day 2011. They welcomed a healthy baby boy, whom she nursed for 15 months. When she began weaning her son, she noticed some changes to her breasts- dimpling, nipple inversion, and pain- but figured that was a normal part of the process. She also remembers feeling extremely exhausted at the time, but dismissed that as well, thinking that it was typical for a mother of a toddler.

When Rebecca went to the doctor for her annual exam that year, however, her doctor was concerned and sent her for further testing. Months of tests, biopsies, and scans followed, ultimately leading Rebecca’s diagnosis of Stage IVb breast cancer with liver and lung metastases on June 18, 2013. Though devastated, Rebecca remembers having an attitude of “I’ll go out of this world with guns a blazing”. She was ready to fight!

Coupling this startling news, Rebecca’s son was diagnosed with autism the following day. Both mother and son began therapy shortly thereafter. For Rebecca, this meant receiving CEF (Cyclophophamide, Epirubicin, and Fluorouracil) chemotherapy every two weeks for two months. This was followed by 12 rounds of weekly Abraxane chemotherapy.  She also received hormone therapy, including Lupron and Tamoxifen, and had her ovaries removed.

Rebecca’s doctors decided against a double mastectomy based on the fact that she was metastatic from the time of diagnosis, and the research that they had found indicated that this wasn’t the best treatment option. There was also a plan to begin radiation, but her metastases stabilized and appeared non-active, so the decision was made to hold off.

Currently, Rebecca defines herself as NED, No Evidence of Disease with stable liver metastases.  She keeps busy as a stay-at-home mom to her active four-year old, who she describes as “super cute and smart”. She continues to be monitored every six months with a PET/CT scan and blood work.

For any woman diagnosed with Metastatic Breast Cancer (MBC), Rebecca points out that there will be some good days and some bad days and that it is important to not be too hard on yourself during the hard times. She suggests surrounding yourself with a great support system from other breast cancer warriors to your oncologist. She also recommends finding an outlet for your feelings. For Rebecca, this comes through art and her church.

Rebecca is prepared for this life-long battle, but remains optimistic that research will find a cure. In the meantime, she consciously lives her life stating, “I look for and try to show inspiration, hope, love and grace wherever I can.”

Here at the Tigerlily Foundation, we are excited to feature Rebecca’s story as we launch our new MY LIFE Program, Metastatic Young (MY) Living in Focus Empowered (LIFE), which is designed to help young women living with Metastatic Breast Cancer. Over the next series of weeks, we will be posting blogs that highlight topics that affect young breast cancer survivors, their caregivers, and their families.  Our goal is to provide young women living with metastatic breast cancer with resources, peer support and a place to connect.  We also want to heighten public awareness of and sensitivity of what it is like to live with MBC.  Living with MBC can be scary and isolating. It leaves many young women feeling angry and uncertain about their future.  At the same time, it encourages others to use every moment of their lives!  We want to share their perspectives with you.  These young women have powerful stories to tell.

Rebecca’s journey is one that many women go through.  It is estimated that more than 13,000 women under age 40 will be diagnosed with breast cancer this year.  If you are a young woman with Metastatic Breast Cancer, here are some important things you should know.

You didn’t do anything wrong

Whether like Rebecca you had a strong family history or your diagnosis came from seemingly out of left field, your world has been turned upside down.   It is easy to start questioning everything- “What if I did this? Or what if I hadn’t done that?” We want you to know, however, that nothing you have done along the way was wrong.  And from this point forward, the decisions you make will be the right ones for you.

You will face challenges along the way

You can still live a full and meaningful life, but it isn’t always going to be easy.  You will have moments when you feel scared, anxious and angry. You may experience unwanted side effect from treatment or find that a treatment is not working like you hoped. You may find that some of your relationships change. You will have to navigate a “new normal” as you juggle your daily life with your illness. 

We are confident though that you will confront those challenges and rise above them. You will be impressed with your own strength.

You are not alone

Metastatic breast cancer, especially in young women, doesn’t get as much attention as it deserves.   Yet that doesn’t mean that there are not many, many others out there going through the same battles.  Approximately 150,000 people in the United States are currently living with Stage IV cancer. And while only 6-10% of patients are Stage IV from their initial diagnosis like Rebecca, 20-30% of early stage breast cancer will eventually become metastatic.  Additionally, a study published in the Journal of the American Medical Association suggests that we have seen “a small but statistically significant” increase in Metastatic Breast Cancer in women aged 25 to 39 years since 1976.  (Johnson, Chien, Bleyer, 2013) However, with the development of new treatment options, women with Metastatic Breast Cancer are living longer and longer.   You can learn more facts about Metastatic Breast Cancer by clicking here.  

You can do this

It may feel overwhelming at times, but we want you to be Empowered.  Find strength in those around you, from family to neighbors or co-workers.  Connect with others who are fighting breast cancer, whether through a local support group or through our website and programs. Make sure to nurture your spirit by doing things you love and taking time for yourself as well.

Your story is unique

No one’s life is just like yours, just as no one’s cancer will be just like yours.  There are many different types of Metastatic Breast Cancer.  Your doctors will run various tests to determine what type of cancer you have as a means of creating your individual treatment plan.  For example, for some patients chemotherapy will be the best route, while others will fare better from targeted therapy.  You can likely expect your treatment regimens to change over time, while you are monitored to see how your body is adapting.

Don’t ever forget that your story is so much more than cancer. Your parents, your children, your career, where you come from, your hobbies, and your talents- there are so many more things that define you than your cancer diagnosis.

You are a survivor

Metastatic breast cancer is a life-long disease, meaning that it is not curable. But who says that only those who have “beat” cancer are survivors?  We believe that everyone who is living with this disease and who is fighting this battle is a survivor. Give yourself that title with pride!

Keep a look out here for upcoming survivor stories and blogs dedicated to some of the challenges faced by young women with Metastatic Breast Cancer. We look forward to supporting you in your brave journey!

Want to learn more about how Tigerlily Foundation can help you? Would you like to use your voice to make a difference for other young women living with MBC?  Email megank@tigerlilyfoundation.org.

Reference:

Johnson RH, Chien FL, Bleyer A. Incidence of Breast Cancer With Distant Involvement Among Women in the United States, 1976 to 2009. JAMA. 2013;309(8):800-805. doi:10.1001/jama.2013.776.