February 2018 Ask the Expert: Recurrence
At our November 2017 Breast Cancer 360, Keeping Cancer at Bay: What Researchers Are Learning About Recurrence; and our December 2017 webinar, Living With the Unknown: Coping With Fear of Recurrence, people who attended the programs had more questions than our experts had time to answer.
For February's Ask the Expert, Living Beyond Breast Cancer expert Angela DeMichele, MD, MSCE, who spoke at the Breast Cancer 360, answered questions we missed during those two programs, such as what role tumor cells play in recurrence and what lifestyle changes can lower risk of recurrence.
We captured two short videos from our November 360 that offer the basics on two issues Dr. DeMichele discussed that night and about which she answered questions below. In the first video, Dr. DeMichele explains circulating tumor cells, or CTCs, and disseminated tumor cells, or DTCs. These are very tiny cells that can break off a breast cancer tumor and enter the bloodstream or find safe haven in the bone to fall asleep for a long time, sometimes forever. In the second video, Dr. DeMichele explains the steps to take part in SURMOUNT and CLEVER, clinical trials that study how early-stage breast cancer recurs and treatments that may prevent metastasis. She reviews the medicines used in the CLEVER trial: hydroxychloroquine (Plaquenil) and everolimus (Afinitor).
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Both are a type of cell that may put a patient at increased risk of recurrence. “Disseminated” refers to those in the bone marrow, “circulating” refers to those in the blood stream. It is thought that these cells arise from the original tumor in the breast, but are “dormant” or sleeping. They may or may not lead to a recurrence. This last point is critically important: DTCs and CTCs are NOT metastasis, and patients who have them are NOT considered stage IV or metastatic. These cells are linked to an increase in risk, like having positive lymph nodes or a high Oncotype DX score. But they do not guarantee a recurrence or metastasis. Patients may have these cells, but for some, the cells will never hurt them.
We don’t yet know very much about these cells biologically in patients. But in animals, these cells appear to be quite different from the cells in the original tumor. They use different types of processes and mechanisms to work.
The tests for DTCs and CTCs have been around for a long time. But until recently, we did not have the knowledge about how to potentially intervene, so their use has not been recommended. These tests are still most appropriately used in a research setting in which patients are closely monitored and offered the opportunity to participate in trials to treat them.
All drugs have side effects, but the drugs we are using in our trials have relatively mild ones. The primary side effects are mild nausea, stomach upset, mild rash and occasionally mouth sores.
There are numerous risks that patients must be aware of to participate. These range from the risk of side effects of the bone marrow procedure, to risks of side effects of the treatment, to the potential risk of emotional upset or distress upon learning that the cells are present and that the risk of recurrence may be higher than one thought.
Yes, patients who are taking an aromatase inhibitor, who meet the other eligibility requirements, may participate.
The nationwide trial, called “GLACIER” will be conducted within the Translational Breast Cancer Research Consortium. The sites that will participate are in the process of signing on. It will be possible to see that list on the CancerTrials.gov site soon.
The trial allows for patients with all subtypes of breast cancer to participate. We believe that there are common mechanisms that these cells use to survive and thrive that are not dependent on the subtype.
The frequency of positive cells in our trial is approximately 20 percent. But it is important to remember that this number will vary depending on the type of patients that we are screening. We are still learning about the rate of positivity within different groups.
Within the first 5 years after diagnosis.
This is an excellent question, and one that we are trying to answer in our studies. The false positive/false negative rate is not known. There have not been any studies done to date to assess this. But we do suspect that the test is not as accurate as we would like, because the cells are so rare. We are developing a more sophisticated and sensitive test that we hope will be more accurate than the current test.
Another excellent question, to which we do not yet have an answer!
We believe that other risk factors for recurrence will be related to these cells, but the studies to date suggest that these cells can be present independent of the other risk factors.
We do not yet have the answer to that question. Our studies seek to find that information.
The largest study that has looked at this suggests that the rate is low – probably less than 5 percent.
These are very similar terms, almost interchangeable. A recurrence simply refers to the reappearance of breast cancer after a patient has already had the diagnosis. This could be in the breast, in the chest wall, in lymph nodes or somewhere else in the body. We typically use the word “metastasis” when the recurrence is found at a distance from the original tumor in the breast, outside the breast and lymph nodes.
We currently estimate that up to 30 percent of patients will experience a recurrence in the course of their lifetimes.
Yes, there are many studies looking at local therapies such as different types of radiation.
The studies we and others are conducting are designed to help us understand the process from start to finish. For example, we are investigating how the cells get out of the breast, what enables them to find and thrive in the bone marrow, how they remain “dormant” or sleeping, for many years, and what methods they use to wake up, travel elsewhere and become a metastasis.
We refer to the monitoring of patients who have had breast cancer as “surveillance” rather than “screening.” “Screening” is a term typically used to refer to the monitoring of women who have never had the disease. Current recommended surveillance includes a yearly mammogram and follow-up every 6 months for the first 5 years after diagnosis. For women who have hereditary risk factors, breast MRI is also added. Importantly, we currently do not recommend scans such as CT scans or PET scans, and we do not recommend blood tests for tumor markers, such as CA 15-3 or CA 27-29, as these do not appear to improve outcomes.
At this time, the best way to monitor this is to be attuned to any changes in how you are feeling, and report them to your doctor. My rule of thumb is to recommend that patients contact me for any new, persistent or worsening symptom that lasts longer than a week or is not improving with over-the-counter remedies such as Tylenol or Motrin. Of course, the vast majority of these symptoms do not turn out to be a recurrence, but such symptoms will prompt your doctor to investigate further and rule out this possibility.
It is difficult to answer this question. Many factors go into calculating a patient’s individual risk. HER2-positivity is not always linked to greater risk than other types of breast cancer. And taking trastuzumab will reduce the risk associated with HER2-positive disease.
Currently, the only dietary data we have suggest that a low-fat, low-calorie, high-fiber diet is best. However, it is hard to really say whether there are specific things about diet that reduce recurrence.
Overall, the best data suggest that there are several lifestyle guidelines to follow to minimize the risk of recurrence:
- Keep body mass index lower than 25
- Limit alcohol intake as much as possible, and to no more than two drinks per week
- Get regular exercise
- Replenish vitamin D levels
One additional piece of information: The data on soy in estrogen receptor-positive disease is controversial. However, I believe that the plant estrogens in soy-based foods and other foods containing plant estrogens may be harmful and should be minimized.
The benefits of these drugs extend beyond the time you stop taking them. However, even with the drugs, there will be a small lifetime risk of the cancer coming back. This risk persists when you have completed taking them.
There was a randomized trial of capecitabine (Xeloda) that showed that women without a pathological compete response who took this drug for 6 months had a 30 percent lower risk of recurrence than those who did not. This trial was conducted in Asia. These results have not been seen with other trials of capecitabine. But because the results were so impressive, this treatment has become part of the conversation for patients who do not have a pathologic complete response.
We now do have data for women who are more than 10 years out from a large study called the “overview” analysis. This suggests that some patients will continue to relapse at a very low rate (less than 2 percent per year) beyond 10 years. This is most likely to happen in patients who have had estrogen receptor-positive breast cancer and is rare in those with HER2-positive or triple-negative disease.
Unfortunately, there are no data on specific supplements that help breast cancer patients. It is important to recognize that many are safe but some can be harmful. I recommend letting your doctor know about any supplements you are taking. It is also helpful to seek the advice of a complementary or alternative medicine practitioner who can make sure you are taking things that are helpful (for symptoms, for example) and not harmful.
It is very common to have residual pain in the arm after the type of surgery you had. However, if you are worried and do not think you are being taken seriously, it is always helpful to get a second opinion. If the answer is still “no cancer” then a physical therapist may be helpful to you in managing your symptoms.