Editor’s note: This story, published during Breast Cancer Awareness Month, is told from two perspectives, patient and doctor. It aims to shed light on a mysterious and very aggressive form of the disease.
The Patient: Jeannine Donahue
It all started with a swollen breast.
I was 26 and just starting my accounting career when in May 2007, I was diagnosed with inflammatory breast cancer. After going to my gynecologist with a rash on my breast months prior, I was told I had a mammary duct infection and given an antibiotic. Meantime, I found a lump in my armpit that was missed initially. I learned later this was a swollen lymph node. Because there was no improvement, I had a needle biopsy, which showed I had ductal carcinoma in situ, or DCIS — the most common type of non-invasive breast cancer. I had hoped that my worries would be quickly resolved with a surgical procedure. Little did I know, everything was about to get worse.
The breast surgeon I was referred to suggested a single mastectomy but refused any other procedure on the rash. So I was sent off to see a plastic surgeon. At the plastic surgery consultation, the doctor stated he wouldn’t operate on me until the rash was looked at. I didn’t know it at the time, but that plastic surgeon saved my life.
[See: What Causes Cancer? 5 Unlikely Claims Explained.]
He referred me to another breast surgeon for a second opinion. That surgeon spoke to my parents and me for the first time about a different type of breast cancer, one that didn’t require the presence of a lump. In fact, all the symptoms I had — breast swelling, sharp, shooting pain, a rash — were all signs of inflammatory breast cancer, or IBC. Unlike DCIS, IBC needs to be treated with preoperative systemic chemotherapy — to help shrink the tumor, then mastectomy followed by radiotherapy.
I was speechless. Here I was, a young adult with no family history of breast cancer and no signs of the typical gene mutations associated with breast cancer, BRCA 1 and BRCA 2. Yet, I was diagnosed with late-stage inflammatory breast cancer. Without treatment, I was told I had six months to live. With treatment, my prognosis was also quite poor — likely only a few years. I felt almost hopeless but was determined to take my chances.
For six years, I underwent treatment for IBC. The journey included multiple rounds of chemo, aided by another drug to kill cancer cells; a double mastectomy performed a month shy of my 27 th birthday; nearly 30 rounds of radiation; several reconstructive surgeries; and a five-year course of the oral drug tamoxifen to suppress my estrogen.
Treatment was grueling. At the end, I was bald, with gray skin. I had been taken apart and put back together. Looking at myself was like looking at my own corpse. Cancer stripped me of everything I knew. While I recognized I was lucky to be alive, I also mourned the person I was before IBC entered my vocabulary.
[See: What Not to Say to a Breast Cancer Patient.]
Now, 10 years after my initial diagnosis, I am healthy and can proudly state that I have no evidence of disease.
Surviving breast cancer put me on a new path of advocacy that would include stops on Capitol Hill to lobby for more research on IBC. It also led me to a physician who would become my mentor — and boss.
I met Dr. Massimo Cristofanilli in 2010. He had recently opened the first inflammatory breast cancer clinic on the East Coast in my home town of Philadelphia. This was the first time I had met someone who not only knew about my disease but was a leader in the field of inflammatory breast cancer. The moment I met him, I knew that our encounter would result in more than a typical patient-doctor relationship. Our paths had crossed for a reason. Today, six years later, I work on his team.
I moved from Philadelphia to Chicago to run the program he co-directs: the Lurie Cancer Center OncoSET of Northwestern University at Northwestern Memorial Hospital. This new initiative combines genomic sequencing and molecular analysis with standard pathology to identify new, individually tailored treatments and clinical trials for patients whose cancers are resistant to traditional therapies. Patients like me.
[See: 10 Things You Didn’t Know About Breast Cancer.]
IBC is a frightening and lonely diagnosis. It is rare and frequently misdiagnosed, accounting for approximately 1 in every 5 breast cancers. I feel fortunate that in this new position I can support patients struggling to understand their disease, just as I was at age 26. Importantly, I know am working to help make headway against the disease that forever changed my life.
Dr. Cristofanilli strongly believes in the value of precision medicine in oncology and uses it in his everyday practice, which serves many patients with IBC.
The Doctor: Massimo Cristofanilli
I have dedicated most of my career to IBC. I saw my first patient in Italy many years ago and I was really shocked by how fast this cancer progresses. Later, when I was at MD Anderson Cancer Center, I decided to leverage my position at a large referral center to launch a specialized clinic and conduct focused research on IBC.
Because this is a much less common type of breast cancer, individual physicians and cancer centers usually see very few cases per year. By creating a dedicated IBC center, my goal was to encourage in-depth study of this deadly disease. My aim has always been to make an impact on IBC while learning from every individual patient. So we started an International Inflammatory Breast Conference and created an international consortium of investigators and advocates. From this work, we have gained a wealth of knowledge and provided IBC awareness and education for the last 10 years. We have been able to establish new preclinical models to better study the disease in the laboratory, launch IBC-dedicated clinical studies and open a new IBC registry of patients, for example, to help discover what these women may have in common, shedding light on why they develop IBC.
Now, at Northwestern University’s Robert H. Lurie Comprehensive Cancer, we have the opportunity to expedite progress in tackling this mysterious disease using the widespread application of genomic information from tissue and blood samples collected from patients with IBC. We are learning about the many unknowns surrounding the biology of inflammatory breast cancer and its resistance to treatment. For the first time, we can also examine the genetics of IBC patients, allowing us to better understand the risk factors for IBC and why some women are particularly vulnerable.
New molecularly driven studies are being launched that are designed specifically for these patients, and international collaborations are helping us connect patients around the country to novel treatments. I am looking forward to the day we can offer a preventive vaccine for inflammatory breast cancer, as well as a simple blood test that could help us make a definitive diagnosis early. My hope is that we can someday write the last sentences of the IBC chapter like this:
” Women identified at risk of IBC should be monitored periodically with an approved blood test and started on preventive therapy, including consideration for a vaccine. If tests continue to be abnormal, breast imaging is recommended even if no symptoms are present. Once incurable, inflammatory breast cancer now has a five-year survival approaching 90 percent.”
More from U.S. News
How Hospitals Are Using Technology to Become More Patient-Centered
Breast Pain? Stop Worrying About Cancer
I Was 26 and Diagnosed With Inflammatory Breast Cancer originally appeared on usnews.com
