Inflammatory breast cancer: The silent killer
The movie scene is all too familiar: The doctor sits across from the patient in a consultation room and delivers the grim news. The patient is grief-stricken. Loved ones gather to cry, hug, and reassure one another.
This could not have been further from my experience.
The day of my diagnosis, I was alone in a hospital bed. The previous three months had been a living a nightmare.
At first, I experienced extreme, bone-crushing fatigue. I would come home from my teaching job and collapse. My then-8-year-old son couldn’t understand any more than I could. “Mom’s lying down again,” he would say, and my heart would sink.
About a month after the fatigue set in, my right breast began to swell and ache; it became red and radiated heat. A doctor diagnosed me with mastitis and prescribed antibiotics.
The breast continued to swell, and the pain increased. The doctor prescribed more antibiotics along with warm compresses. By this time, the breast had grown to twice the size of the other, and the pain was constant and excruciating.
I went to a different doctor, but the treatment remained the same, regardless of my worsening condition. It was just a tough case, they reasoned.
Finally, on the morning of Dec. 16, 2016, I woke to find the skin had taken on the consistency of an orange peel. I decided to go to yet another doctor, and this was the visit that saved my life. Dr. Gaye Simpson at the Center for Women in Canfield took one look at the breast and sent me to the hospital. Within hours of checking in, I was wheeled into surgery.
When I woke, I was in tremendous pain, even more than before. The nurses could not give me any information on my condition or why I was in such pain.
The next morning, the surgeon came into my room, pulled up a chair and spoke: “Listen, I’m going to be honest with you.”
I knew this could not be good.
“What we found,” he went on, “was a rare type of cancer called inflammatory breast cancer.”
How could this be? Why had none of the doctors considered this? Wasn’t I too young? I was 40. Doesn’t cancer present itself as a lump? My confusion soon gave way to relief. Finally, an answer. It certainly wasn’t ideal, but it was a starting point for proper treatment.
For the next three days, I lie in the hospital in severe pain. Instead of draining an infection, which I was told would happen in surgery, they ended up removing a portion of the breast that had become necrotic because of the cancer they found inside.
I turned to the Internet for information on Inflammatory Breast Cancer. I was terrified by the statistics I was reading: Only 1 to 3 percent of all breast cancers are IBC. Even with the full arsenal of treatment, the survival rate was around 20 percent.
It soon became my mission to find someone, anyone, living with IBC. It was a chance encounter with a woman at my local treatment facility that led me to a Facebook group for cancer. I posted in the group, introducing myself and asking if anyone there had IBC. A woman responded and invited me to join a group specifically for IBC.
For the first time since my diagnosis, I felt hopeful. There I found hundreds of women, even young mothers like myself, all over the world who were in treatment or who had completed treatment and were still alive!
It was there that I met Terry Lynn Arnold, a 10-year survivor from Houston, Texas, who founded the IBC Network, a nonprofit organization that funds much-needed research and education for this misunderstood and often misdiagnosed disease.
According to Arnold, inflammatory breast cancer is the most aggressive and deadly type of breast cancer because of the way it grows and spreads. It doesn’t present itself as a lump like other breast cancers. IBC will grow in layers until the breast is painful and swollen. The tumor cells grow until they block the lymphatic vessels resulting in the cancer spreading to this skin.
There is NO early detection. No mammogram or ultrasound can catch it before this happens. By the time symptoms present themselves, the cancer is already stage 3 or 4.
Now this next part was like the movies: Treatment made me so sick that I began to question whether I could continue.
Even as my heart went on beating, I felt I wasn’t really living. I was a prisoner in my own body, in my own home, and all too often in the hospital.
I watched the seasons change outside my bedroom window. Friends went on with their lives, and I was stuck in limbo. I felt like a ghost, invisible, infected, even feared by others. Halfway through treatment, I was so ill, I was ready to quit. My oncologist gave me the option of hospice, which I seriously considered.
If it was not for my family — most notably my son, parents, brother and sister-in-law — I can say with certainty, I would not be here today, sharing my story.
My case was further complicated by a positive result for the BRCA1 genetic mutation, which caused my cancer. In my case, I had to first undergo seven months of chemotherapy. Next, I had a double mastectomy (removal of both breasts, all breast tissue, and lymph nodes from the chest wall and under both arms).
Next came 30 radiation sessions, which I am currently halfway through.
Finally, I will undergo a hysterectomy because of the BRCA gene. This is not the normal course of treatment for most breast cancers; this was my specific route because of the IBC and genetic involvement.
This December will mark not only the one-year anniversary of my diagnosis but also my official status as an IBC survivor. I plan to return to work in January at Kent State University at Trumbull, where I teach College Writing 1 and 2
Throughout my journey, well-wishers have made remarks such as, “Hang in there. It’s almost over. You will beat this!”
While I appreciate their kind words and the sentiment behind them, most do not understand that life is never the same for cancer survivors. Even if we “beat” the cancer, we are never out of the woods. Recurrence is a constant and very real threat, particularly with an aggressive cancer like IBC.
In addition to recurrence, even the best treatments available can cause crippling, long-term effects. Just a few of the lasting physical issues include: compromised immune system; chronic pain and fatigue; loss of memory, vision, and hearing; osteoporosis; infertility; increased risk of stroke, blood clots, and heart failure; damage to the brain, heart, spinal cord, liver, kidneys, lungs, and nerves. Lifelong emotional side-effects can include PTSD, survivor’s guilt, isolation, severe anxiety, and clinical depression.
If this all sounds a little grim, that’s because it is.
With pink ribbons and balloons flooding our vision each October, we must remember that breast cancer is not pink, nor is it feminine or pretty. It is a horrible, deadly disease that does not discriminate.
We must continue to share our stories, to help educate one another, and to support organizationsthat carry out much-needed research for this silent killer.
For more information on IBC or to help with the cause, visit theibcnetwork.org.