Oct 27, 2018 9 min read

When people look at me, they don’t see a cancer patient. I have long hair and a healthy complexion. I am a busy wife, mother, daughter and friend. I never miss my kid’s school and sporting events. I like to read and write and bake. I have a pretty awesome life, actually.

When people look at me, they would never guess that I have stage four metastatic breast cancer. Most people don’t even know what that is.

Early stage breast cancer is found in the breast tissue and sometimes the lymph nodes. Treatment includes any combination of chemotherapy, radiation and surgery. The treatment is harsh and side effects are many, but when treatment is finished, the patient is considered cured and is usually able to move on with their lives. Cancer becomes a distant, yet horrible, memory.

When breast cancer spreads to another part of the body, such as the bones, lungs, liver or brain, it is called metastatic breast cancer. When breast cancer metastasizes in the bone, it is still breast cancer, not bone cancer. Metastatic breast cancer (MBC) is incurable, and the only form of breast cancer that causes death. The prognosis for a patient with MBC is about three years.

With MBC, the goal of treatment is to maintain quality of life and manage symptoms, while preventing cancer spread for as long as possible. Patients are prescribed a particular treatment and then carefully monitored for tumor progression. When cancer progresses, it is treated through radiation, surgery or other measures; then a new treatment plan is developed. This process is known as “scan, treat, repeat” and will continue until treatment options are no longer available, or the patient dies.

Treatment never ends. MBC patients will be in treatment for the rest of their lives.

I was diagnosed in 2015 with MBC, almost three years after I was declared “cancer free” after my original Stage 2 breast cancer diagnosis in 2012. What many don’t realize is that 30 percent of women diagnosed with early stage breast cancer – Stages 0, 1, 2, and 3 – will develop metastatic disease in their lifetime. Screening is important, even after treatment is over. Although I was aware of the risk of progression, I didn’t really understand metastatic disease.

Although my disease is terminal, I am currently doing well. My metastasis was found in my bone and my lungs. I endured radiation and began an oral chemotherapy regimen. I just started my 36th month of my first line of treatment. Although my scans have picked up suspicious activity from time to time, my disease has not progressed.

I suffer from side effects such as fatigue, bone and joint pain, low white and red blood cell counts, stomach issues and dry skin. Some days are worse than others, but I have found my treatment to be manageable.

I am monitored closely by my oncologist. Every month, I have blood work to check general health as well as my red and white blood cell counts and tumor marker numbers. Due to chemotherapy treatment in the past, finding a vein can be a challenge. Because I had lymph nodes removed, only my right arm can be used for blood work and those veins contain a lot of scar tissue from years of needle insertions. Although I do not have a fear of needles, and I have gotten used to the pain that comes with the sticking and the digging; it can be emotional when routine blood work is so difficult.

I discuss symptoms and my general well-being with my oncologist. I need to report any unusual aches and pains or unusual symptoms. The symptoms that I used to ignore and hope went away are much more alarming, as they could signal cancer progression. My oncologist schedules routine scans about every three months to check for progression. Those scans can bring back painful memories. I will never forget the sounds of those machines. Outside of the actual scans, waiting for the results is the worst. Waiting for the phone call that can literally mean life and death is a test of faith, strength and patience, and one that never gets easier.

After my appointment, I go to the chemo lab to receive an injection that helps make my bones stronger. Treatment can weaken my bones and make them susceptible to fracture. This injection strengthens my bones and makes them more resistant to tumor progression. As I said, I have become used to needles and procedures, but this injection feels like a bee sting, or ten. It also makes me nauseous later that day.

Appointments, scans and side effects of treatment interrupt my daily life and routine. Still, the emotional effects are much more difficult. MBC comes with a prognosis of about three years. Although I rejoice that I have surpassed that time frame, I am still very much aware of it. Holidays, birthdays and other milestones are sometimes as joyous as they are painful. In the back of my mind, I always wonder if this will be my last. My thoughts are always with my family and I imagine how they will cope when I am gone. It is not something I dwell on, but it does keep me up at night sometimes.

I am involved in many online support groups for patients with MBC. Every day, I read about women suffering with side effects of treatment, with the pain of progression, with the emotions of entering hospice and with the news of them dying. I have lost so many friends to this disease. Every day, I see posts about another wife, mother, daughter and friend who has been killed by this dreadful disease.

This disease is dreadful and it causes pain and despair. I am a positive person, but every time I hear about another death of a fellow MBC patient, my heart breaks, and I have to keep my mind from going to dark places.

According to the Metastatic Breast Cancer Network, 40,000 women and men die from MBC every year in The United States. Even with promising treatments recently developed, the statistics haven’t changed in the last 20 years. Women are still dying in about three years from MBC.

Very few research dollars from national breast cancer campaigns go to MBC. A recent study by the Metastatic Breast Cancer Alliance found that of public and private funds raised between 2006 and 2013, only 7 percent of those funds went toward research of metastasis, when metastasis is the cause of breast cancer death. In October, many companies market their products with pink labels and ribbons. Most of these companies are promoting awareness, and not funding research as consumers might think.

I urge consumers to read labels and educate themselves before purchasing these products.

When people think about breast cancer, they think of early stage disease. They think about pink ribbons and cancer walks and celebrations for survivors. Those of us with Stage 4 MBC don’t really fit into the “pinktober” stuff. The money raised does not benefit us. The celebrations of women who “survived” cancer don’t describe our situation. Sexualized campaigns are hurtful to many women who have gone through mastectomy surgery to remove cancerous tissue. They aren’t worried about saving breasts, they are worried about saving their lives.

MBC patients celebrate the survival of early stage patients. Some of us were diagnosed Stage 4 at the onset, but most of us were early stage patients once, too. We pray that those women stay survivors and that they never have to deal with cancer again, not like we do.

I may not look like a cancer patient. My hair has grown since chemotherapy. My complexion isn’t pale and gray. My energy level isn’t what it used to be, and my bones and joints ache terribly some days; but I am still able to take care of my family. I am one of the blessed ones. Many of my fellow MBC patients are not so fortunate. They are suffering greatly, and their time is running out. My time will run out, too.

There is nothing pretty about breast cancer. No pink ribbon can take away the sting of a child losing a mother, or a husband losing a wife. I want to educate others about metastatic breast cancer, the only breast cancer that kills. I want to use my voice in memory of those who are no longer here, in honor of those living with this disease today and for those who will develop this disease in the future.

I believe that awareness is important, but I want to find a cure for MBC.

I want to be a survivor, too.

Editor’s note: Jennifer Collins’ blog “LifeConfetti” appears on the Observer-Reporter website.

Facts about metastatic breast cancer from the Metastatic Breast Cancer Network

• No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.
• Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.
• An estimated 155,000 Americans are currently living with metastatic breast cancer(also called Stage IV breast cancer). Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.
• Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.
• Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.
• Twenty to 30 percent of people initially diagnosed with early stage disease will develop metastatic breast cancer. About 6 percent of people are Stage IV from their initial diagnosis.
• Young people, as well as men, can be diagnosed with metastatic breast cancer.
• Treatment choices are guided by breast cancer type, location and extent of metastasis in the body, previous treatments and other factors.
• Metastatic breast cancer is not an automatic death sentence. Although most people will ultimately die of their disease, some will live for many years.
• There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease is unique.

To learn more, visit www.mbcn.org.