No matter how much family and friends want to say the right things, sometimes only another person who is living the daily challenges of metastatic breast cancer can find the words that soothe the soul. These metastatic patients, at varying times brave, scared, angry, sad, loving, and determined, offer their personal perspectives on living with stage 4 breast cancer.
On Living with Stage IV Breast Cancer
"As someone who has been surviving Metastatic Breast Cancer for over five years, I have come to believe that society puts a lot of pressure on people with cancer to be the "ideal patient." Always the warrior. Always ready to fight the fight. Always part of winning the war. Always "ALL IN" for the battle. What I've come to realize is that MBC patients need something else just as much as they need better and more innovative treatment options. They need acceptance and to have their "new normal" embraced for however it may look and feel every single day. MBC is a thief that can rob us of our identity making it hard to figure out life after the sucker punch of that diagnosis has settled in. It is simply impossible to always be positive, optimistic and put out good energy all the time. There are days when you just want to curl up in a ball in the corner and cry, sleep or just be left alone. I believe that it's critical for women with MBC to accept themselves and however they may feel from one day to the next. The roller coaster ride of emotions comes with the territory, and we need to cut ourselves a break and allow ourselves to feel what we need to feel. Sure, it's never good to stay in that state for too long but powering through 24/7 is exhausting and just unrealistic. Whatever you're feeling at any given moment is ALL GOOD. Think of it this way. Having down times will actually allow you re-build your reserves and energy to face the challenges of MBC in a realistic way so you can move forward on your terms."
On the Diagnosis
"Learning that I had metastatic breast cancer was the single worst moment of my life. I have never felt so frightened, so abandoned by the universe. My son had just turned two, and my husband and I had just celebrated my fifth wedding anniversary. This was not the life I was "supposed" to have. We were supposed to welcome a new baby in 2018, and instead we became a cancer family. But the universe has also shown me the incredible metastatic breast cancer community, the love of family, friends, and strangers, and I have committed my life to be a voice for metastatic breast cancer and to educate and foster more of the community on this lonely road. It has truly been a gift to have the clarity to create a living legacy for myself. A friend once told me that "there is magic in cancer." In the darkest hours, the scariest corners of this diagnosis, there really is".
On the Diagnosis and Living with Stage IV Breast Cancer
"I found out I had Stage IV Metastatic breast cancer in February 2016 at the age of 49. I have triple negative breast cancer that had spread to my lungs upon diagnosis. It has been a long road, but I am strong and determined to stay strong. I have been through a mastectomy followed by five months of TAC (Taxotere, Adriamycin and cyclophosphamide), and then six months of weekly Taxol. In the past six months, I have had two different Gamma Knife Radiation procedures...one in March of 2017 and one in July of 2017 as well as brain surgery in April 2017. It is not easy to live with this horrid disease, but I have a strong Christian faith and excellent doctors, so I am determined to "outlive" it. It has taken too many lives of people I care about. I plan on living to a very ripe age in honor of them".
My youngest child was born in 2008 when I was 35. I have always been healthy. I don’t smoke, I eat decently, I exercise on the occasion and breast cancer doesn’t run in my family. When I was nursing my youngest son and kept having infections my doctor said it was mastitis, prescribed antibiotics and it cleared up. Then it came back. After the third time I noticed the spot that kept becoming infected didn’t totally heal up. Still nobody was concerned including me. Why would they be!? I was only 36. I was busy with my kids and like all mom's with toddlers, I was severely sleep deprived so of course I was tired and not feeling my best.
After I weaned my son it still wasn’t completely healed so I went to my doctor who sent me for a biopsy. I thought it seemed like a bit much, I just need some sleep and a heavy duty antibiotic, but I’m sure she had to cover all the bases.
Two days later the call came that I had breast cancer. I remember thinking okay, I can do this. A few months on chemo will be rough but I will just focus on the light at the end of the tunnel. Two extremely difficult weeks of tests later I found out there was no light at the end of the tunnel. Not for me. My cancer had already spread from the breast, to the lymph nodes and into my chest cavity, spine, sternum, ribs and collarbone. I was 36 years old with a 14 year old, a 5 year old and 18 month old baby at home and my doctor’s words were, “treatable but not curable”.
I'm coming up on my 2 year mark since diagnosis and life has taken on a new normal at my house. I take medication daily and once a month my husband and I drive 80 miles to Boston for an appointment with my oncologist and treatment at the Dana-Farber Cancer Institute. I’m fortunate that I have world class treatment available to me and that my cancer responds to hormone therapy. I’ve been able to put off chemotherapy for now but there are side effects and it’s hard knowing that I will need chemo eventually and some day even that won’t be enough. I get monthly lupron shots to put me into menopause so I'm dealing with the joys of menopause way too early.
The hardest part for me is not being able to be as active and involved as I used to be due to the side effects of the hormone therapies and zometa. I worry that I will die before my youngest son, who is now 3, is old enough to have memories of me and I try not to think about the fact that I will most likely see my oldest son graduate high school but odds are against me that I will be around to see the other two graduate.
My husband and I are struggling to find peace in all of this and each dealing with our own fears and worries along with trying to maintain a sense of normalcy in our house. It puts a lot of pressure on our marriage and has landed us in counseling. Being a Mom is hard enough but being a Mom with MBC is so much harder. Not only do I have to schedule my treatments and scans but I also need to worry about daycare for my youngest and who is taking my daughter to karate or my son to lacrosse practice and how my husband is going to do it all when I am not around anymore.
On Telling Friends and Family
"As a very independent person, I hated to ask for help, but I was so grateful to have someone go with me to the oncologist to hear test results and take notes. I know, she in turn, was truly happy she could do something for me."
On Telling Family and Friends
"I walked out of the office and found a chair to sit in. I’m not sure how long I sat there in a shocked fog, but the next thing I did was text my sister that I needed a biopsy and that I was not capable of talking. I then called my husband at work, he was not in his office, so I left a message with one of his co-workers to please find him and tell him that I needed him to come home immediately."
On Living with Stage IV Breast Cancer
"There is barely a day that goes by that I don’t cry. I’m too young to die, I have a son in college, I want to see a grandchild, see my youngest son graduate from college, dance with my two youngest sons at their weddings, and grow old with my husband. I don’t want to live with this prognosis every day of my life, wondering if this new lump on my arm or neck is cancer. Wondering what each blood test will show. Wondering and worrying how bad things will eventually get with my health."
On the Diagnosis
"Initially, it was not clear whether my tumor was breast cancer or a primary lung cancer ... nor did I understand the difference. I was pretty naive. I did not understand that if the small tumor were breast cancer, it would be stage IV, but if it were lung cancer, it would be stage I. Awaiting biopsy results, I searched the Internet. I was stunned by what I learned. Then the phone call. I had metastatic breast cancer. I just sat there ... alone at my desk ... completely immobilized."
On Telling Family and Friends
"I could not tell my mother. She was in her 90s. Just a year before, I had uprooted her from her home on the West Coast, moving her to the East Coast so I could care for her. She was only 14 when her mother died of kidney cancer. I could not tell her she might outlive her daughter. And who would care for her? She had left her support system out west. Here, she had only me."
On Day-to-Day Coping
"A year after my diagnosis I was doing well. I was happy and was active and involved in various activities. My husband and I went to dinner at a local Mexican Restaurant. We were chatting over salsa and tortilla chips talking about nothing in particular. Suddenly I burst into tears. No reason. No provocation. I went from smiling to crying in a split second. The disease is always there ... lying underneath. You learn to cope ... and cope well. Your life moves forward. But MBC is ever-present."
"There is no right way or wrong way. There is only your way.”
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