My mother’s oncologist ordered the blood test, carcinoembryonic antigen (CEA), to check for the recurrence of colon cancer. The good news was that there was no evidence of recurrence. The bad news was that she didn’t have colon cancer.
She had breast cancer.
Though she was feeling better, the chemotherapy and radiation had taken its toll. For the past couple of months, she had experienced constant nausea and vomiting. During and after treatment, her hands and feet felt like they were on fire. Many times she wanted to give up and quit. Yet she persevered and felt emotionally stronger after the ordeal. She started to feel like herself again. Life began to have some normalcy. Until an insurance bill appeared asking for hundreds of dollars.
Apparently over the past year, her oncologist had routinely ordered the CEA test multiple times as part of her cancer follow-up. When she called to contest the charge, the insurer told her to talk to her doctor. She didn’t know this test was unnecessary until the bill. And until she called me, her son, a primary care doctor.
She asked her oncologist about the repeated blood tests. He simply shrugged. No apologies. No explanation. No acknowledgment of the error. Didn’t he get the lab results of the CEA? Shouldn’t he have been aware that the test was not relevant for her care?
Well, it didn’t take long to get into the New Year, did it?
There I was this earlier this week, starting my New Year right by getting exercise on my elliptical when I heard the announcement that Johnson & Johnson was partnering with researchers at Massachusetts General Hospital’s cancer center and other major cancer centers to evaluate the potential of a new technology which can isolate single cancer cells circulating in the blood of patients with known cancers.
The news in itself is an impressive step forward in this type of research. Being able to isolate a single cancer cell in a sample of blood is in a sense one of the holy grails of cancer research. Scientists have been working diligently on developing these techniques for a number of years, and to now have a technology that may in fact move that dream closer to a clinical reality where it actually improves the treatment of patients with cancer is exciting.
However, there is always a caution that comes along with these types of announcements.
First, and perhaps the most obvious, is the fact that this is an announcement of a research deal. Nothing more, nothing less. It is not a new breakthrough. It is not something that has been proven effective in improving cancer detection and treatment. Not that it is anything less than stunning to develop and demonstrate that this technology works-but as with all research it is a giant step to go successfully from the laboratory phase of development to the clinical phase of making a real difference in patients’ lives.
Indu Subaiya, Director of the Health 2.0 Developer Challenge interviews Abdul Shaikh, Program Director for National Cancer Institute's Health Communication and Informatics Research Branch at NIH about the National Cancer Institute's inspiration in putting together the Enabling Community of Data for Cancer Prevention and Control challenge. Abdul talks about NCI's support of data mash-ups and visualizations related to cancer prevention and the need to create tools for both consumers and policy makers to utilize their data to drive behavior change, and draws inspiration from Hans Rosling's TED talk in 2006.
Interview with Abdul Shaikh
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I have stomach cancer and will undergo surgery to remove part or all of my stomach today.
While a truly expert blogger would have documented the facts and his perceptions from the moment of discovery, I have been preoccupied with absorbing the shock, weighing my options and managing the logistics. I have been short on insight, long on anxiety.
But I have regained some composure since finalizing the plan for my immediate future, so I thought I’d try to capture some of my observations about this wild period this time around. After all, I listen all the time to people talk about how they experience these few weeks between a serious diagnosis and the beginning of treatment and, having gone through it repeatedly myself, I have a lot to compare it to.
A little background: This is my fourth different cancer-related diagnosis. My stomach cancer was discovered due to the vigilance of my primary care doctor who treats adult survivors of childhood cancer and who leaves no symptom – regardless of how minor – unexplored. I had dismissed my insignificant symptom once it disappeared after a few days. However, my doctor didn’t, and it turned out to be a small gastric tumor, probably a result of the high doses of radiation that were the standard of treatment for my stage of Hodgkin’s disease in the early 1970s. The tumor will be removed Monday, along with as much of my stomach as is necessary to prevent its recurrence. While the size of the tumor and its staging leave me optimistic that I won’t need chemotherapy and radiation, I won’t know for certain until a week after surgery.
Gena Cook is the CEO of Navigating Cancer, a new Health 2.0 company aiming at getting cancer patients online with their care providers. Gena tracked me down in a Starbucks in Seattle (oxymoron I know) when I was up there last week, and she told me about the new company. Here’s the (short) interview