Caregivers Are Key Part of Life With Metastatic Breast Cancer

February 21, 2018

Are you or a loved one facing complex treatment decisions because of hormone receptor-positive metastatic breast cancer? LBBC, Medscape Education/WebMD Education and SHARE recently partnered to develop an interactive online tool, “I Have Metastatic Breast Cancer: What Are My Options?” Through this step-by-step educational resource, people with metastatic hormone receptor-positive breast cancer and their caregivers can become more comfortable and confident in making decisions that impact their treatment.

LBBC Hear My Voice volunteer Cheryl Fuentes appears in videos for the tool in which she discusses her treatment, her interactions with healthcare providers and her advice for other people facing hormone receptor-positive metastatic breast cancer.

Here Cheryl, who was diagnosed with de novo metastatic breast cancer in July 2014, writes about the importance of caregivers and how those caregivers can learn more about metastatic breast cancer using the tool, which can then help them be more involved in their loved ones’ treatment plan.

Sometimes it’s not clear to me who suffers more from my metastatic breast cancer diagnosis: me or my primary caregivers (my husband and three children). It’s hard for all of us to get through ongoing treatments, anticipate scan results, deal with side effects, wonder about progression, and feel confident about treatment changes. After almost 4 years of non-stop treatment, some days are dark and hard to get through. 

But those dark days don’t last long. From day 1, I made a commitment to live with my cancer diagnosis, not die from it. Oh, I know those renegade cancer cells may very well take me down, but it will only happen after I’ve carried this cross high and with a positive attitude, after I’ve squeezed out lots of life from each day, after I’ve been there for the milestones that my 11-, 15-, and 18-year-old have had since my diagnosis and that we’ll continue to share, and after I go through each day as normally as I can.

What makes this all possible? How do we survive the tough days? Mostly, it’s my approach to my treatment plan and the role my husband, Alfredo, has played in supporting me. When I heard the words “metastatic” and “stage IV,” I quickly rephrased them to “the rest of my life.”  And “the rest of my life” could mean a few weeks from diagnosis, or many years. We were stressed and really anxious about all of the unknowns around the diagnosis, and the “waiting game” was horrible — waiting for appointments, waiting for test results, waiting for the oncologist to call back. At the same time, my husband and I were educating and equipping ourselves with as much information as possible; we were on information overload. One day I said to myself, “gosh, this stress and anxiety could go on for the rest of my life. I think it will get me before the cancer!” 

I clearly understood the stress this situation could cause for me and those closest to me. My husband was very involved in supporting me at my initial appointments and my first round of chemo, and in being there emotionally for me. We discussed side effects and how we would manage them with three children at home and no immediate family nearby to help out. We strategized how he could maximize his leave from work. We made lists of more chores the kids would need to do. We paid bills in advance. We worried about money. We did all of this so he could be there for me. But this was all really stressful! And it could go on for the rest of my life? Oh my!

So, we made some changes in my care plan. I started going to my doctors’ appointments and chemo alone, freeing up my husband to focus on work, managing our household, scheduling offers from friends to help out, and driving the kids to sports and school events. Of course my husband and I discuss every detail of my treatment, but when it is convenient for us. Sometimes I make treatment decisions on my own and then consult him. And I’ve learned that I don’t have to commit to anything at an appointment. I’ve become very good at saying to my oncologist, “OK, let me take some time to think this over, discuss it with my husband, and get back to you tomorrow.” My medical facility has electronic medical records, making it easy for me to show my husband reports, look at test results, or email my medical team. Now, almost 4 years later and having been through five different chemo regimens and targeted therapies, including a clinical trial, we continue to live with the cancer rather than let it take over every minute of every day.

There are great resources available through your own support, faith-based, or community networks and online. Tools like “I Have Metastatic Breast Cancer: What Are My Options?” can really help people with metastatic breast cancer and their caregivers understand the disease. It’s so important for caregivers to become well-versed in the jargon. This online resource, and others available from LBBC and SHARE, gives caregivers a sense of the treatment options available, the names of medicines, how often treatment is given, and other technical information. The simple-to-follow format helps makes this jungle of information easier to understand so caregivers can focus on taking care of the multiple needs of their loved ones through this challenging journey.

Caregivers can gain a keen understanding of the need to take a long-term perspective when it comes to caring for their loved one. They can learn to stop hitting the panic button and realize that, just maybe, the best thing they can do is be their loved one’s “rock” through the weeks, months and years of the roller coaster that is metastatic breast cancer. These tools also help caregivers realize the importance of having a realistic yet positive attitude as they figure out the best way to support their loved one. Information and education are essential to navigating this disease, and these online tools are an essential part of that process.

After a metastatic diagnosis your life changes tremendously, forever.  You suffer. Your caregivers suffer. But you have to be in it for the long haul, and you have to exercise the options you have before you, ranging from choices about your attitude to nutrition to treatment plans. Don’t be afraid to “do your journey your way.” Keep living, not dwelling on the darkness and letting stress take over. I’m still able to drive. I still work full-time. I still consult support groups or go online to review research, side effects or potential treatment options. My husband provides amazing care and support, and my children have embraced the ugliness of cancer as just one part of our life. 

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