I needed some good news. It came in an email on Friday.
Every summer I go to a lunch with other inflammatory breast cancer (IBC) survivors who live in the Carolinas. There are about 20 people on our mailing list, and usually about eight to ten survivors can make it our lunches along with some spouses and children to round out the group. It’s a wonderful time to share stories, rejoice about good news and ask questions about problems. Women I had lunch with when they were extremely worried about their prognosis are now coming up on the third, fifth and 10th year from diagnosis and are doing great.
This year of the eight of us who were gathered, five continue to show no evidence of disease (NED), and three women are coping well with metastatic disease or new primary cancers. The mood at lunch was mainly upbeat.
However, in trying to sort out our mailing list, I realized that five of us have died in the last fifteen months. One was just diagnosed in 2012 and died this year in June. There are some others who aren’t answering emails that I am worried about. I’ve been feeling down about this terrible disease and its impact on women and their families.
Then Friday an online support group for IBC that I belong to received an email about a recent study at MD Anderson of IBC survival rates. The study compared patients diagnosed before 2006 and those diagnosed after 2006. The three year survival rate jumped from 63% to 82%. These are the best numbers I’ve ever seen for IBC survival stats, and I was immediately encouraged.
This particular study looked only at patients who were Her-2 positive and who had been treated at MD Anderson. One of the issues that researchers there were trying to answer was whether their setting up a clinic specifically for IBC patients had been helpful. Clearly, it was.
What does this mean for you if you have been recently diagnosed with IBC? One important implication is that it would be a good idea for you to go to a comprehensive cancer center that sees many IBC patients either for treatment or a consult. Because IBC is rare, many doctors have seen only a few cases. The regional hospital where I was treated had only two cases before me.
IBC can be a tricky disease to treat. As with any illness, the more cases a doctor has seen, the more expertise he or she has to help you. If you don’t live near one of the dedicated IBC clinics or a research hospital doing studies on IBC, then your doctor may be able to arrange a long-distance conference to discuss your case and make sure you are getting the most up-to-date treatment. I traveled a thousand miles for a consult at a comprehensive cancer center that had doctors and nurses with IBC experience. Even the appointment receptionist knew about IBC. Then I received treatment with local doctors fifteen minutes from my house.
The study was also looking at changes in treatment protocols and whether they worked. The main change in treatment for Her-2 positive patients seems to be that after 2006, 100% of the patients received prompt administration of Herceptin (trastuzumab) or other targeted therapies for Her-2 positive tumors. In the past Herceptin was often administered after chemo and other treatments were over. Now it appears that targeted therapies should be started early in the treatment along with chemotherapy.
This is a small study, and it doesn’t include women who are ER/PR positive Her-2 negative or those who are triple negative; so it doesn’t give overall survival rates. However, since Her-2 positive tumors tend to be especially aggressive, it is encouraging.
If you have inflammatory breast cancer, you may be discouraged by the statistics you read. However, keep in mind that some web sites are still posting old numbers. Even new research may be misleading. Any five year survival numbers you see are about patients who were diagnosed more than five years ago. First, the researchers need to find their data samples (people), analyze the numbers, and publish their study. This process can take years. While that happens, new treatments come along, and it will be more than five years before the research will be published about the women diagnosed in 2013. No one knows the survival prognosis for someone diagnosed today.
I am expecting more good news every year.
Tsai CJ et al. Outcomes After Multidisciplinary Treatment of Inflammatory Breast Cancer in the Era of Neoadjuvant HER2-directed Therapy. Am J Clin Oncol.* <https://www.ncbi.nlm.nih.gov/pubmed/23648437> 2013 May
2. [Epub ahead of print]
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.