I interviewed Dani Stern two years ago for an article about the realities of Metastatic Breast Cancer (MBC). She was then just 44 years old. Some would have you believe MBC is just another chronic disease. But unlike chronic ailments that can be managed for many years with injections, pills, diet and exercise, MBC claims the lives of 78 percent of those diagnosed with the disease in less than five years. Dani battled for almost nine years after her initial diagnosis, getting to see her 5-year-old daughter and 2-year-old son grow into a beautiful teenage girl and a sporting, adolescent young man. Dani’s body wore out on Aug. 16, 2015. Her spirit remains with those of us who knew and loved her. Though she told me that fighting MBC was like standing in the middle of a busy highway, Dani did so with perseverance, courage and strength. She unyieldingly hoped and advocated for a cure.
Family: Married to Sean for eight years. They have a dog, Gracie.
MBC story: Initially diagnosed eight years ago. After having detected the cancer early at Stage 1, Lindsay underwent a lumpectomy, chemotherapy and radiation. Lindsay followed that with a year of an estrogen-blocking drug, Tamoxifen, after which she was given a clean bill of health. In 2013, back and leg pain took her to an orthopedic doctor. Scans showed that her breast cancer had spread to the bones in her sternum, pelvis, leg, skull and wrist. She had surgery to put a rod in her femur and hip to stabilize her almost-broken hip. She also underwent new radiation and began infusions to strengthen her skeletal structure. To combat the cancer that was being fed by estrogen, she had her ovaries removed and started Tamoxifen again. She takes morphine every day for pain but currently feels better than she has in the past couple of years. She also plans to continue her Tamoxifen and skeletal-strengthening drug Xgeva as long as they continue to work and then will move on to another course of treatment, which is how treatment for all MBC patients works. For the rest of their lives, it’s Scan, Treat and Repeat.
In her words: “MBC isn’t cancer in your breast; it’s breast cancer that’s spread to other parts of your body, typically your bones, liver, lungs and brain. Thirty percent of women who have battled an early-stage breast cancer will have MBC later in life. I want those who are labeled as ‘survivors’ to listen to their bodies and know their bodies, even when their doctor gives them a clean bill of health. If something doesn’t feel right, don’t wait — go see your doctor and be proactive about your health care. One more thought: The number of deaths from breast cancer has not decreased from 40,000 per year in the past two decades. We have to focus more research and funding on MBC. If we find a cure for this metastasis, it will benefit all other types of cancer as well.”
Family: Married to Sisco, her high school sweetheart. They have two boys, 6 and 8 years old.
MBC story: In October 2011, Stephanie told her doctor she wasn’t feeling well. He adjusted her birth control to try to stabilize her hormones. Three weeks later she found a walnut-size lump in her left breast. She saw her doctor again. By this time, she was noticing physical changes to her areola and nipple. Her doctor told her that it may have been because of the new birth control and to give it 30 days. It didn’t change, so on a Monday she was sent to have a mammogram and two ultrasounds; this was followed by a biopsy that Wednesday. A lab technician called her late Friday to tell her it was cancer. She tried calling her doctor’s office to find out more, but the office was already closed for the weekend. The following week she was introduced to a surgeon and told she had Stage 3B4 breast cancer, just one step away from Stage 4. The treatment plan was chemotherapy and Tamoxifen to shrink the tumor, followed by a lumpectomy to remove the tumor. After a genetic test, Stephanie learned she was BRCA2 positive, a genetic condition that is highly susceptible to breast cancer. She opted for a double mastectomy and a hysterectomy, followed by radiation. The following December, pain in her hip took her back to her doctor. They found that her breast cancer had spread to her bones. She underwent more radiation and medication to help strengthen her skeletal structure. Additional pain and tests showed that the cancer has now spread to Stephanie’s liver. She is back on a chemotherapy regimen. Her last tests showed that the chemo is slowing down the cancer in her bones, but not in her liver. She is working to get accepted to a clinical trial for the BRCA2 gene at the National Institute of Health in Maryland.
In her words: “There are days that I decide the dishes are going to stay in the sink and the floor is going to have to stay dirty because I’m too tired to get up. Those days I try to find some movies or TV shows I can watch with my grandmother in my pajamas — that may be the only energy I have that day. I’ve had to learn that this is OK. I’ve also learned how fortunate I am to have such wonderful people in my life. Friends, family and complete strangers have blessed me with so much care. They have put together fundraisers to help with financial difficulties, which kept us from losing our home. Several local businesses have donated to help cover my expenses until I find a clinical trial that works for me. I don’t know where I’d be without everyone’s care. It has helped me stay positive and grateful, and that has kept me strong. Thank you!”
Family: Married to Jeff for 10 years. They have a son, Jonathan, who is 6.
MBC story: When Shauntell was diagnosed three years ago, the cancer had already metastasized and spread to her liver and a lung. It has since also presented in her bones. In October 2014, she traveled to the National Institute of Health in Maryland for a clinical trial. They removed cells from her liver and trained them to attack the mutations in her DNA. They reintroduced these “ninja” white blood cells back into her liver with a 50/50 chance they would do their job. Over the next nine months, the tumors shrank, remained stable and then began to grow again. If the research makes advances in the ninja training, Shauntell is eligible to participate in the trial again. For now, she is undergoing chemotherapy treatments trying to keep the cancer from growing or spreading further.
In her words: “I want people to understand that when breast cancer is contained within the breast, it is treatable and beatable. Once it moves (metastasizes), it becomes terminal. Almost all of the awareness and funding programs are directed toward cancer that is still in the breast. The people that actually die from this disease are not seeing the benefits from the big popular October awareness efforts. We need to focus more on saving lives, not just saving breasts.”
Family: Married to Travis for 14 years. They have two children, a 10-year-old daughter and a 2-year-old son.
MBC story: Two years ago while weaning her son, Amy noticed a lump in her breast. She thought it was a plugged milk duct. When Amy could still feel the lump after she she was finished with breastfeeding, she went to her doctor. It took several weeks for her to get in for a mammogram and ultrasound. The mammogram didn’t show anything, as her breast tissue was dense, which is often the case for young women and for those who have been breastfeeding. The ultrasound, however, revealed two lumps. The follow-up biopsy confirmed it was breast cancer. Based on the results of an MRI, she and her surgeon decided the best option was a bilateral (double) mastectomy. During the two weeks she was waiting for the surgery, she began having pain in her neck. After her double mastectomy, the neck pain persisted. Her oncologist ordered a PET scan, and it confirmed that her breast cancer had already metastasized to her bones. She couldn’t start chemotherapy as her body now needed to recover from the surgery. Upon the advice of her oncologist, she went to Chicago to get a second opinion from the Cancer Treatment Center. Center staff felt she should have gone to an oncologist right after her diagnosis and not after having surgery. The delay potentially gave the cancer in her bones time to spread. If the PET scan would have happened earlier in Amy’s timeline, she may have opted for chemotherapy to battle her metastatic cancer first, and then deal with the breast tumors and cancerous lymph nodes later.
In her words: “I had MBC from the onset but didn’t learn about it until after we had already started a treatment plan. I may have chosen a different path if I had known more. I would encourage people who are diagnosed with breast cancer to meet with an oncologist, a radiologist and a surgeon before making any decisions on a treatment plan. And especially if there are any other symptoms other than those in your breast, make sure you get a PET scan that will show if the breast cancer has spread.”
Family: Married to Sam, mother of three children (one deceased) with seven grandchildren and two great-grandchildren (with one on the way).
MBC story: Melanie was 47 when she discovered a lump in her breast and was diagnosed with breast cancer. She had a partial mastectomy just three weeks before her daughter’s wedding and later underwent both chemotherapy and radiation. After taking Tamoxifen for five years, she took Aromasin, another hormone blocker, for another three. In November 2012, she began to have trouble breathing. A tumor was found on her bronchial tube. It was her breast cancer that had metastasized. Chemotherapy took her hair for the second time but it also had the desired effect on the tumor; Melanie was cancer-free for four months. Then the metastasis was discovered in her bones. It has since progressed slowly, being held at bay with mild versions of chemotherapy. A new lesion on her rib started growing aggressively, so she is now back on the strong chemotherapy that the tumor on her lungs responded to.
In her words: “I have MBC, and I will have it for the rest of my life. This is my reality. I’m 63 years old and should be in the prime of my life. Instead I am in a fight for my life. I face this fight every single day. My last day will come sooner than my family and I had planned for because of this cancer. This initially made me angry, but then I realized I needed to reprioritize my days so that I’m making the most out of this time that I do have with them.”
Read past stories about metastatic breast cancer from Chad Estes • Acting on the realities of metastatic breast cancer• Putting the realities of cancer into words
Chad Estes is a Boise photographer and writer whose project, “The Reveal Mission,” showcases stories of breast-cancer survivors and fighters. Learn more at revealmission.org.