About two years after I finished chemotherapy, surgery, and radiation to treat inflammatory breast cancer, I started having trouble with shortness of breath. Horrible coughing fits shook my body. When I couldn't breathe, I could feel my heart rate increase.
The first thing my doctor did was to check me out to make sure the cancer had not metastasized to my lungs. Good news! Clear lungs!
The next referral surprised me. The doctor sent me to the cardiologist. Maybe I was short of breath because my heart was not working properly. Once I stopped to think about it, I realized that I should have thought about heart problems sooner. After all, the consent forms I had signed for both my chemo and radiation mentioned possible heart side effects. My radiation oncologist and I had discussed whether I should have extra radiation to the lymph nodes under the sternum right above the heart. I decided it was more important to live long enough to have side effects and told her I wanted the most aggressive treatment.
Now I was sitting in the cardiologist's office wondering if I had made the right choice. When the cardiologist assured me that any heart issues I might be having currently could not be related to treatments I had two years earlier, I was not assured. I knew that I was slipping between the cracks of medical specialization. The cardiologist did not know anything about side effects from cancer treatments, and my oncologists did not know much about hearts. Fortunately, it turned out that my heart was not the problem.
A recent article by Zosia Chustecka for Medscape indicates that I am not the only person to be caught between medical specialties. Chustecka reports, "Some of the new anticancer drugs are so effective that they can keep tumors in check; ironically, it is their adverse effects on the heart that can threaten to cut life short. A death from therapy-related heart failure in a patient whose cancer is in remission is the ultimate irony-a deathblow from collateral damage while the war on cancer is being won."
This problem has led to the development of a new specialty, cardioncology. So far there is not special training or board certification for doctors who want to specialize in treating heart problems related to cancer. However, last year interested doctors formed the International Society of Cardioncology while meeting at a conference in Milan, Italy. This year the society met in Nashville, Tennessee, for a symposium dedicated to educating doctors on the topic and building partnerships between oncologists and cardiologists.
The key is to get the specialties talking to each other-not always a habit of busy doctors who read their own journals about their own specialties, but who often do not know much about progress being made in other fields. Another problem is the way clinical trials are set up. Cardiologists do not know for sure if the standard treatment for certain types of heart problems will work on cancer patients because the trials usually exclude people with a history of cancer. Oncologists are often not sure if a standard treatment for cancer should be administered to a woman with a history of heart problems because the research excludes women with heart problems from studies on cancer drugs.
For breast cancer patients, the three main sources of possible heart problems from treatment are the anthracycline chemotherapy drugs like Adriamycin, targeted therapies like Herceptin, and radiation. If a patient has a previous history of heart problems, the doctor may decide not to administer certain drugs known to cause heart side effects. Most patients who start treatment with a healthy heart will not have heart problems from these treatments. Doctors know to monitor carefully for heart problems and will stop administering a treatment if heart problems start to develop. However, some patients will have heart damage and need to see a cardiologist. At that point it is important that the cardiologist and the oncologist work together.
Those of us who are long-term survivors are on the frontier of knowledge about what cancer treatment can do to the body years after treatment ends. It used to be that people like me who had aggressive cancers that needed chemotherapy, surgery, and radiation did not live long enough to have heart or other medical problems. No one knew what would happen ten or twenty years later because so few people lived that long.
As this new discipline of cardioncology develops, oncologists will be able to consult with doctors who have expertise in managing heart issues for cancer patients and survivors. Researchers will begin to look at this problem leading to better treatment plans. The International Society of Cardioncology is already beginning to keep tabs on the potential cardiotoxicity of cancer drugs.
When I talked to my doctors about how to treat my cancer, we decided to use the "big hammer" approach, going for the strongest possible treatments, hoping they would work well enough for me to live long enough to have side effects. For people with Stage I or II breast cancer, it makes sense to discuss possible long-term side effects from each treatment before automatically going for the biggest hammer. However, no one should decline life-saving treatment today because of problems that might come up years later.
If you are managing both cancer and heart issues, ask if there is a doctor interested in cardioncology in your area. Although it is not yet a board-certified specialty, you could call the nearest big research hospital or comprehensive cancer center and ask if any of their cardiologists are members of the International Society of Cardioncology. You can also go to the Society's website for a list of members and other information about cancer treatment and heart issues. The website is written for medical professionals, so you may need some help in translating the medical language, but it would give you a starting place for information. Most importantly, make sure your cardiologist and oncologist talk to each other.
"It's a good problem to have," people often say when progress in one area leads to unintended consequences. Heart issues turning up five, ten, or fifteen years after treatment is a good problem to have for people who did not use to live more than two or three years with the old treatments.