Most people are diagnosed with breast cancer by a surgeon, usually a local surgeon recommended by their primary care doctor. Maybe the cancer was so small and easy to remove that more decisions aren’t necessary. But most of the time, the biopsy is just the start of decision-making. Lumpectomy and radiation, or mastectomy? Is surgery enough, or do you need chemo? Do your local doctors have the expertise to deal with your situation, or do you need to see the world famous doctor at the big research institution?
I knew nothing about navigating the medical system when I started the diagnostic process, so I just went to the doctor the previous one had recommended. All were in my little town of Liberty, MO about twenty miles from Kansas City. Because I had inflammatory breast cancer (IBC), an aggressive and rare cancer, some of my friends suggested I really needed to be seen by specialists, but the mechanics of making that happen seemed too overwhelming.
For most people, the local oncologist will be the obvious choice. But if you have an unusual type of cancer or if you have unique complications to your situation, thinking about the advantages of a big hospital should be on your list of things to do.
Most states have a National Cancer Institute Designated Cancer Center or a big research and teaching hospital. Here the medical staff will know the latest treatments for your kind of cancer, and because of the sheer volume of patients they see, the medical staff will probably be highly competent, even with procedures that may be less common. All the specialists you need to see will be under one roof, and the equipment used for scans and treatments will be the latest and best. If you are lucky enough to live around the corner from this type of hospital, it may well be your best choice.
However, there are also some good reasons to be treated by your neighborhood docs. I can’t say I really understood all the advantages when I decided to stay with my local doctors, but I soon learned them. Unless you live in a rural area where all doctors are far away, you will receive your treatments close to home, which is a huge consideration when you are tired and possibly nauseated from treatments. If you are hoping to work during treatment, being able to work in the morning and stop off at the doctor’s office on your way home may be the factor that makes the difference.
I certainly didn’t understand when I made the decision to be treated in my town, how often I would have some kind of symptom or side effect that would need to be checked out between regularly scheduled appointments. Thirty minutes after my call to the nurse, I could be sitting on the examining table.
My local doctor, the nurses, and the office staff all knew me. That kind of personal care may be really important to you, and it will be harder to come by in a bigger institution.
The disadvantages of a local doctor also became clearer to me as we moved along with my treatment. None of my doctors ever would tell me exactly how many IBC patients they had treated, but eventually I learned that I was the third to receive treatment at the local hospital and that the first two had died.
After my surgery, my doctors were visibly shaken to learn that I had 16 positive lymph nodes despite a relatively fast diagnosis and a prompt beginning to treatment. They hadn’t expected my cancer to move that fast, and I’m guessing that since then when they have suspected IBC, appointments and tests have been done stat And I was starting to question my easy-going compliance with whatever they suggested. I wanted to be sure I really was getting the best treatment.
I was a little nervous when I suggested to my doctor that I get a second opinion, but he said that he planned to suggest it himself because of there were several treatment options for me, and he wanted the help of the experts to decide which way to go. I had recently moved to Missouri from North Carolina and knew people at Duke.
At Duke, the receptionists knew about IBC-a first for me. I’d been having to explain even to oncology nurses how I could have breast cancer without a lump. My husband and I spent the morning there, and everyone answered questions without rushing us. The Duke doctor confirmed that my local doctor’s treatment plan was probably the best way to go, but he went over my other options with their risks and benefits. He suggested one additional test my local doctor hadn’t planned and sent a complete report back to Missouri. Today many IBC patients are choosing to go to the first clinic dedicated specifically to inflammatory breast cancer at MD Anderson in Houston.
If you are trying to decide whether to use your local doctors or go to a big cancer center, you must weigh many factors. You need doctors who have experience with and knowledge about your type of cancer. You also need accessibility for emergencies and follow up care. I found that local doctors who were willing to work with the research doctors was the perfect combination for me.
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.