Erin Leland's Life With Metastatic Breast Cancer

In honor of National Breast Cancer Awareness Month, we asked Patch readers to share their breast cancer journeys on Patch. This is Erin Leland's story:

October 13 was Metastatic Breast Cancer Awareness Day. I thought I'd share my story of my life with breast cancer. Thank you for the opportunity.

Summer 2009

Lo and behold, I found a tiny lump. This was not a big shock to me because I had lumps before, but they always turned out to be cysts that disappeared on their own. That is what I thought I found that morning. My gynecologist recommended an ultrasound and a mammogram and to follow up with a surgeon in case it was suspicious. He thought it was probably nothing. The radiologist saw microcalcifications in the mass on the mammogram and not on the ultrasound. However, he felt they were probably nothing but recommended a biopsy to be safe. I saw a surgeon who agreed that it was probably nothing (see a trend?), but he insisted that I have an excisional biopsy.

My surgeon called on December 9, 2008, to give me the results. I was diagnosed with Ductal Carcinoma In Situ (stage 0), so it was not "nothing" after all. The surgeon told me several times that I should pat myself on the back because I found this lump, and this type of cancer usually does not show up in lump form, but rather much later during a typical mammogram around age 40. It usually becomes invasive cancer before women discover it. This would probably not have been found without the lump. I felt shocked and relieved when I heard the diagnosis because I knew I was lucky to have found this, but what 31-year-old new mom ever thinks that she'll discover she has breast cancer? Not me.

My mind raced as I cried. I thought, "I am healthy. I am young. I do not have a family history of breast cancer. What do I do now? How does one deal with this as one who has infant twins? Will I be okay? Will we get through this?” I immediately went into information-seeking mode, searching for any and all information related to DCIS and young women with breast cancer.

I did exactly what my surgeon said to do; I made appointments with an oncologist, a radiation oncologist, and an imaging center for a breast MRI. I immediately wanted a bilateral mastectomy, but that was purely a knee-jerk reaction. My cancer was not at a highly elevated stage, so I chose breast-conserving surgery. Between December and February I had multiple surgeries and tests. I finished my last radiation treatment on May 4th, 2009. I was cured, and I hoped to never have a recurrence. I knew that I had to be vigilant and check myself regularly.

So, to answer my earlier question - I did get through this. My body would never look the same, but that was okay. The cancer was found, treated, and cured.

March 2014

On August 21, 2013, I had my annual check-up with my oncologist. My doctor and I were thrilled because I was 4-and-a-half years cancer-free! I only had to be on Tamoxifen for six more months, and life was good.

Move ahead to September 20, 2013. I found a lump in the shower. Our world fell to pieces. I knew it was something. The mammogram showed nothing, but the ultrasound showed a suspicious mass. After having a biopsy, I was told on October 15, 2013, that I had invasive ductal carcinoma (stage 1) along with some more DCIS. Since I already had lumpectomies and radiation followed by Tamoxifen, my only options were mastectomy and chemotherapy. I chose to have a bilateral mastectomy because at that point I couldn’t take any chances. My surgery was on November 20, 2013. I recovered from the mastectomy and reconstruction, completed four rounds of chemotherapy, had a scary 16-hour stay in the ER, all while balancing raising our 5-year-old twins. I worked throughout treatment and recovery. By 2014, I was done, or so I thought.

October 13, 2018: Metastatic Breast Cancer Awareness Day

October has always made me uncomfortable since my first breast cancer diagnosis. There is absolutely nothing pink about breast cancer. Companies "pink-wash" their products and take advantage of people's good hearts by making them think they are helping the cause. I'm sure some companies do help by raising awareness and funds for research, but why don't other cancers have such attention?

Today is the only day of the year that celebrates the only breast cancer that kills 113 women and men every day. Only 2 to 5 percent of research funds support finding a cure. Up to 30 percent of all early stage breast cancer patients end up with this disease, and it cannot be prevented.

I did everything I could have done to rid my body of cancer. My body has been cut open at least 10 times. I subjected my body to medications and chemotherapy that caused terrible side effects. I tested negative for every gene that could be analyzed to predict an increased risk of cancer, yet here I am. Three oncologists told me this is not my fault. I thought it was. I thought maybe I did not do enough. During the winter of 2017, I started to feel aches and pains in my lower back and ribs. A rib x-ray led to a PET scan, which led to a bone marrow biopsy.

On February 14, 2018, I was diagnosed with Metastatic Breast Cancer of the bone. I have extensive bone mets throughout my skeletal system: entire spine, entire pelvis, hips, sacrum, ribs, scapula, and both femurs. I was 40 at diagnosis. My cancer is ER/PR+ and HER2- as it was the last two times. This is the most common subtype of breast cancer, yet we have the fewest treatment options once it becomes stage 4.

This disease will end my life, and the average life span post diagnosis is three years. I am in pain regularly and have even had several fractured ribs from the cancer eating away at my bones. I am in constant fear of breaking bones.

I am not fighting a battle. Fighting talk should have no place with cancer. When I hear people say, "She lost her battle with cancer," my heart breaks. It makes it seem like it is her fault as if she did not have enough “fight” in her, and that is beyond sad. We do what we are told. We go to treatment every month. We take our medications. We do what we need to do to get as much time on this earth as possible.

I think people often forget that I am sick because I work, and I have hair (for now at least). The emotional rollercoaster of MBC is something I cannot explain. Cancer is part of our daily life, and much of what we do must be scheduled around my treatment. Every three months I have "scanxiety." This is when we discover if the meds are working to keep the cancer from spreading to more bones or to my organs. MBC typically starts in the bones and then moves to the liver, lungs, and brain. All treatments eventually stop working.

People say things like, “Well, we all die,” as though that will make me feel better. It is true that everyone dies, but most people do not think about their deaths like MBC patients do. I started writing lists of advice and cards to my children. I keep diaries for them. I have asked my husband if we should consider not saving for my retirement. Managing all of these thoughts with the side effects of my meds and the pain of my disease is quite difficult.

However, I know I am lucky. I see breast cancer oncologists at the world renowned Johns Hopkins Hospital. My family has an amazing support system. I am fortunate, but I cannot remain quiet. I feel that MBC education is so important. I hope that more people will donate to organizations like Metavivor, which grants 100 percent of their funds to research. I hope people remember that we exist, and more is needed. Thank you for reading.

—Erin Leland

See more stories from other breast cancer survivors, fighters and supporters, here.

To learn more about breast cancer or how you can help, please visit The National Breast Cancer Foundation.

Image Credit: Erin Leland