Inflammatory breast cancer (IBC) is considered a rare disease. Because only one to five percent of all breast cancers are IBC, finding doctors experienced in treating it can be difficult. I traveled a thousand miles to get a second opinion when I was in treatment.
That’s why the establishment of the Morgan Welch IBC Clinic at MD Anderson Cancer Center in Houston Texas was such a welcome resource when it was established 10 years ago. To celebrate the program’s 10th anniversary, scientists and IBC advocates gathered for a conference February 11-12, 2017.
With researchers and doctors from around the world assembled to present their research findings, you might expect the first address to be by a famous scientist. I was pleased that the first speaker was a patient, Sandra Bishnoi. She emphasized the importance of including the patient’s voice in research and clinical management decisions.
With a new baby and a busy professional schedule as a chemistry professor, Bishnoi downplayed her symptoms and didn’t rush off to the doctor. She had too much to do! By the time she did see the doctor in 2011, she had Stage IV inflammatory breast cancer with metastases in her bones. Today, showing no evidence of disease, she teaches at Rice University and is an active volunteer in both the IBC and metastatic breast cancer communities.
Starting a conference attended mainly by research scientists with the personal effects of IBC emphasized the ways research affects real people.
Bishnoi had advice for patients and doctors. Her main points apply to both in all types of situations.
Understand your disease.
Although Bishnoi was a chemistry professor, she didn’t know anything about IBC. She had to learn the basics about IBC and its treatment. She found the most trusted resources for medical research and used them regularly.
It’s easy for a layperson to think that understanding medical research is beyond her. That was my reaction when I was diagnosed. But I needed to know what I was facing, and there was almost nothing written for the average person about IBC, so I learned to tackle medical articles.
I had to look up the big words, and there was medical jargon that I never did understand, but I could make my way through the introduction and conclusions, and I could read the graphs that showed which treatments worked best. As patients, we need learn everything we can about our disease because there will be important decisions we will have to make. Often the doctor will have brochures to help us.Patient-to-doctor communication is improved, says Bishnoi, when patients have educated themselves well enough to know what questions to ask.
Learn the pros and cons of each treatment option.
There are standards for IBC treatment. It begins with chemotherapy, and usually includes surgery and radiation. But depending on the patient’s medical history, the tumor’s hormone and HER2 receptor status, and the extent of the disease, there are many possible variations. Each has risks and benefits. Bishnoi encouraged the doctors attending the conference to make sure they not only give patients options, but explain why each course of action might be appropriate or not.
Know your personal priorities.
A breast cancer diagnosis requires establishing short and long-term goals. Bishnoi’s children were 1 and 4 years old when she was diagnosed at age 37. She also had professional goals as a chemist and professor. She and her husband needed to decide which were most important to them. They decided that she would resign her teaching job and move from Chicago to Texas to be closer to his work and top-notch medical care. Their children and her health needed to come first for a while.
Each person’s priorities will be different. While I know many IBC patients who travel for treatment, I made the opposite choice. One of my options involved a cancer center three hours from the town we had moved to a few months earlier. Our family was already stretched so far from our support base, I couldn’t face adding to our stress. Today several hospitals offer specialized care for inflammatory breast cancer, but not everyone will want to travel to one, especially since local doctors can now consult with experts far away. Family resources and priorities mean there is no one right answer.
Evaluating treatment options in light of personal values is important. For some Stage IV patients with extensive disease, choosing the treatments that will give them the best quality of life is preferable to hoping that a drug with many side effects might add a few more months to their survival.
Advocate for others.
Bishnoi advised the patients at the conference to reach out beyond themselves. She helped to start a support group for metastatic breast cancer patients. She mentioned opportunities to sit on grant reviews or speak at conferences as ways to contribute to the cancer community and beyond. She reminded the scientists present to include patients in their research. For the metastatic patient who may not have long to live, contributing to research is something she wants to do, not a burden. Patients want their voices heard.
I was inspired by Sandra Bisnoi’s presentation. Putting the patient first at a conference like this one is an important symbol of what needs to be happening in every doctor’s office every day.
See More Helpful Articles:
Inflammatory Breast Cancer: Understanding IBCInflammatory Breast Cancer Diagnosis StoryTen Plus Years Living with Metastatic Breast Cancer: Inspiring StoriesSix Tips for Better Communication with Your Doctor
Phyllis Johnson is an inflammatory breast cancer survivor who serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. She stays current on cancer information through attendance at conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. A retired teacher, she has been writing about cancer issues at HealthCentral since 2007.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.