A little over a year ago, I had never heard of Inflammatory Breast Cancer (IBC). It's not surprising though. Most people -- including many in the medical field -- have never heard of this type of cancer. IBC is a rare form of the disease, accounting for only 1-5 percent of all breast cancer cases. But this 1 percent cancer quickly became much more than that for me and my family.
The first time I came across this particularly nasty type of breast cancer was when I did a quick Google search of my symptoms, which included a swollen, red breast and pitted skin. I thought I had a summer rash, or, in a worst-case scenario, mastitis (a breast infection), potentially caused by a blocked milk duct. Though I had stopped nursing a while back, my youngest daughter was 16 months old at the time, so it felt like a likely possibility.
But what I found when I conducted that memorable search online was Inflammatory Breast Cancer. It is a rare and aggressive form of the disease and is unique in that it presents itself with symptoms such as redness, swelling and tenderness in the breast and pitting of the skin. The cancer grows in sheets and often there is no lump. No lump?! Worse yet, mammograms often can not detect this scary disease -- though at age 34 and with little family history of cancer, I hadn't yet had a mammogram anyway.
IBC is diagnosed by its clinical presentation, ultrasounds, MRIs and biopsies. By nature, Inflammatory Breast Cancer is diagnosed at a late stage, either Stage III or IV, as the cancer has already invaded the skin. There is no early detection for IBC. And the prognosis, survival and recurrence rates for this type of cancer are much worse than typical breast cancer. The five-year survival rate for IBC is somewhere between 25-50 percent.
I knew immediately that this rare form of cancer was what I had, and prayed that I was wrong. But I wasn't. After a whirlwind week of testing, I was diagnosed with Stage IV IBC in September 2011. The cancer had metastasized to one spot on my spine and to two lymph nodes. I was devastated and in shock. A Stage IV diagnosis is pretty much the worst you can get. I was "fortunate" that the cancer hadn't spread far and was relatively contained, making me what I refer to as "barely stage IV" and what doctors call oligometastatic. My oncologist recommended we move forward with an aggressive treatment plan with a "curative intent." There was no need to convince me. With two little girls (aged 4 and 1 at the time), a loving husband, family and friends and so much to live for, I was all in and ready to throw everything at this monster that we could. A cure at Stage IV is rare, at best. But, I figured with my odds being what they were already, I might have a shot... and perhaps I should head to Vegas as well.
I started chemotherapy a week after I was diagnosed, less than two weeks after I first heard about IBC. I soon had surgery to implant a Port-A-Cath in my chest, a device used to easily access a vein. My first set of chemo drugs was harsh, and I got infusions every other week for eight weeks. I shaved my head. I lost my hair. I moved on to a different set of drugs with a weekly regiment for 12 weeks. And in January, I was thrilled to have a scan show the mass in my breast was almost completely gone and my nodes and spinal tumor no longer lit up the screen. The chemo/prayers/support/positivity combo seemed to be working! So, I went with my family on a spur-of-the-moment trip to Disney World to soak up some magic before my surgery.
I stopped chemo in preparation for my upcoming mastectomy, but a routine cardiac echo found a 2-centimeter clot in my heart caused by my port tube. Surgery was delayed and we watched the clot to see what it would do. There were other complications, bumps in the road, but I remained on chemo every three out of four weeks through September while we kept an eye on the clot, so I had a full year on chemo. During that time, I continued working as I had all year. I took vacations with my family and friends, started growing back my hair, had a great summer and felt almost normal for a while. The clot remained stable and it was finally safe to move forward with my single mastectomy. My surgery was on Sept. 19. I am recovering well, and the great news is that my pathology report showed no residual cancer!
I am now gearing up to move onto the next stage in my treatment: daily radiation for about seven weeks. They will zap my spine for 10 sessions and my chest wall for 33. Even though I appear cancer-free, we are not taking any chances. The radiation should mop up any lingering cells the chemo or surgery failed to get. Because radiation comes after surgery with an IBC diagnosis, reconstruction surgery is not recommended for another year or so. And through radiation and beyond, I will continue my targeted therapy of Herceptin infusions, a relatively-new antibody that my oncologist believes saved my life. I will take it indefinitely, or until it stops working for me. Or until there's a cure for cancer.
I am part of an online group of others with IBC. And through this group I have received so much support and understanding that really only others with the same diagnosis can provide. But the dark side, the painful side, of belonging to this close-knit group of strangers is hearing when treatment has failed someone or the cancer has progressed or that there is nothing left for the doctors to try. This cancer is ruthless and doesn't discriminate. Young mothers, grandmothers, wives and friends have been taken far too soon from this beast of a cancer. My response to treatment so far has been truly amazing, but it's not the norm, and it's not guaranteed to stick. Recurrence rates for IBC are high, particularly within the first two years of diagnosis. My IBC sisters with progressing disease -- riddling their brains, their lungs, their livers -- were often in my situation only a short while ago.
The pinking of October has brought much awareness to breast cancer, but this rare form is still largely unknown and is often believed to be under-reported due to its late diagnosis. So many will never hear of this disease until it impacts their lives. Be vigilant about changes in your or your partner's body. Be your own advocate when you know that something isn't right. And please help spread awareness by telling someone you know about IBC -- it could save a life. Because this 1 percent cancer is so much more to people like me.
This piece is part of the "My Breast Cancer Story" project. To learn more and submit your story, click here.
Correction: In the state of Massachusetts, Inflammatory Breast Cancer Awareness Day was Oct. 18, 2011.
For more on breast cancer, click here.