Discovering a Recurrence
Over the past week, I have had several conversations with several women about the timing of the discovery of a recurrence. As you may know, the reality is that it does not matter if a recurrence is discovered in July because routine blood work finds elevated markers, or not until October when hip pain, for example, suggests a problem. Women will do just as well and the treatment will be equally helpful whether it begins in July or a few months later. This is so totally counterintuitive that we all struggle to understand. Especially with all the emphasis on early detection of primary (non-metastatic) breast cancer, it would seem that finding mets as early as possible would be equally important. ASCO (the American Society of Clinical Oncology) lays this out in its guidelines for follow up of breast cancer; the recommendation is not to draw blood markers or do X-rays or scans unless there is a reason to be concerned.
Here is a quote:
(Read full selection »)
The following tests are not currently recommended by ASCO for regular follow-up care because they have not been shown to lengthen the life of a person with breast cancer:
A complete blood count (CBC) test and liver and kidney function tests
Computed tomography (CT or CAT) scan
Fluorodeoxyglucose-positron-emission tomography (FDG-PET) scan
Breast magnetic resonance imaging (MRI) test
Breast cancer tumor markers, such as CA 15-3, CA 27.29, and carcinoembryonic antigen (CEA).
Learn more about ASCO's recommendations for tumor markers for breast cancer »
Some oncologists do routinely draw blood at follow up visits, and some women want these tests done. This can be a point of discussion between you and your doctor, and it helps to have the background and knowledge to make an informed decision. Not doing tests is not about saving money; it is about the confusing reality that there is nothing to be gained from them. To be fully honest, I have known women over the years whose recurrence was discovered by a routine blood test. It is safe to assume that the recurrence would have announced itself anyway in the near future, but these women were glad to have treatment begin. I represent the flip side of not wanting to know bad news until it is necessary. In the first few years after my first breast cancer in 1993, it was standard practice to draw these bloods and do an annual chest X-ray. Up until a few years prior to this, it has also been standard to do annual bone scans. I have clear memories of standing in front of the chest x-ray machine with my heart pounding and feeling so afraid that something bad would be seen. Of course I was relieved when it wasn't, but the relief was not as big as the anxiety had been.
After a particularly thoughtful conversation with a woman who has Stage IV breast cancer, I asked my husband to please explain this to me again. Here is what he said, and I hope it is helpful to you, too:
There have been two prospective randomized trials done approximately 20 years ago, which compared the effect of scans done regularly along with blood tests, to routine care such as MD exams and routine mammography in patients treated with curative intent who were feeling well, without symptoms. Although metastases were detected several months earlier in the aggressively screened group, there was no survival difference. Hence, the heavily screened patients had to live the with knowledge their disease recurred for additional months, and it appears that the treatments that were used did not result in prolongation of life after the metastatic disease was discovered. These studies govern our thinking and that is where the field is. One could ask whether newer drugs would work better if started earlier? We do not have proof. However, when we were using very high dose chemotherapy and autologous marrow transplant, we specifically sought out metastatic disease early, thinking that the high dose therapy would have a bigger impact on a smaller tumor burden. As you know from the randomized trial, there is no advantage to using very high doses of chemo and transplant.
Thus, we do not feel it is critical to image and survey with markers a woman who has been treated for cure, and feels well. We go into an aggressive search for the disease mode if she is symptomatic.