Lessons in Supportive Care, VII: Follow-up Care for Breast Cancer
August 1, 1997 7 minutes read
Lessons in Supportive Care, VII: Follow-up Care for Breast Cancer
By Tom Smith, MD, FACP
Breast Cancer Disease Management 101
Patient 1: "Dr. Smith, why are you always checking my neck and asking me all these questions? Dr. Highrent always just listens to my lungs and orders some blood tests!"
Patient 2: "Tom, I came to see you because Dr. Highrent insists on ordering CA 15-3 tests every time I see him, and my insurance won’t pay for them. Are they really necessary?"
Patient 3: "Dr. Smith, I want that CA 27.29 test. I don’t care if it’s false-positive. I’ve got to know. If you will not order it, I will go to Dr. Highrent."
Breast Cancer Follow-up Tests
Follow-up of breast cancer patients is a hot topic, and is representative of what we do as oncologists. Recent publication of the American Society of Clinical Oncology clinical practice guidelines for breast cancer follow-up tests gives us evidence-based good practice. (Breast cancer surveillance expert panel. Recommended breast cancer surveillance guidelines. J Clin Oncol 1997;15:2149-2156.) How do we put these suggestions into practice?
What tests should we do?
Recommended tests are listed in the table. The first ones are self-explanatory. Patient education about symptoms is not, since the available breast cancer booklets do not give any help beyond "report any changes." There are none with pictures or illustrations, and there are none that list the areas most likely for cancer to come back. There are none that list the questions the doctor should ask each time.
The coordination of care is to have patients see one doctor, not three or four, on a periodic basis. The ASCO Expert Panel did not specify whom should see the patient, just that it be an experienced person.
Table
Recommended tests
Test Frequency
History and directed physical exam q 3-6 months ´ 3 years, then q 6-12 months ´ 2 years, then annually Breast self exam Monthly
Mammography Annually
Pelvic exam Annually
Patient education about symptoms
The tests we should not do are:
CBC, chemistry studies (CEA, CA 15-3, CA 27.29), CXR, bone scan, and ultrasound or CAT of liver.
The reason for this diagnostic "paring" is three-fold. First, tests are infrequently the first sign of recurrence. At least 70-80% of recurrences are noted by women in between visits anyway.
Second, the tests like CEA and CA 15.3 have an unacceptable high rate of false-positivity and false-negativity. (ASCO Tumor Marker Expert Panel. Clinical practice guidelines for the use of tumor markers in breast and colorectal cancer. J Clin Oncol 1996;14:2843-2877.) The CA 27.29 was approved for evaluation of suspected bony metastases in symptomatic patients, and little has been published on it; it will be addressed in the 1997 update of the ASCO tumor markers guideline.
And third, the interventions have limited effectiveness once tests show metastatic cancer. There are physicians who believe that metastatic breast cancer is curable, but that sort of belief system should not be used to make guidelines. (Ipsilateral breast cancer recurrence is curable, yet not everyone is getting mammograms.) The facts are that metastatic breast cancer is still incurable and that interventions given for three asymptomatic spots on a bone scan were judged by the panel to be as effective as those given for five spots, one of which is symptomatic. It is important to recognize that these tests are not recommended because they do not help or have unacceptable false-positive and false-negative rates, not because they cost too much.
Does testing improve survival or disease-free survival?
The simple and correct answer is no. The randomized, clinical evidence shows that more intensive testing does not improve survival, disease-free survival, or quality-of-life among breast cancer survivors.
How about screening for symptoms?
Be aware that screening based on symptoms alone may not be specific enough. Of 757 patients who filled out office questionnaires, 76% had some symptoms. Of those, 129 had symptoms that triggered an evaluation, but only 5% had metastases. (Jager W, et al. Anticancer Res 1996;16:3169-3171.)
Do cancer patients want these tests?
Breast cancer patients want those tests that are helpful, and the patients don’t want tests that are not helpful. And if we believe quality-of-life data, then formal quality-of-life studies have shown that testing does not improve quality -of-life one bit.
Dr. Charles Loprinzi explored the issue with a large support group in Rochester, MN. First, he asked how many patients wanted the tests. Then, he went over the evidence that showed no benefit from the tests. When he asked again, only a very small number wanted the tests. The number who thought such tests were "extremely important" fell from 47% to 0%, and the number who felt such tests were "minimally useful" rose from 9% to 58%. (Loprinzi CL, Smith TJ. Surveillance testing of curatively-treated cancer patients. 1996 Fall Conference Education Book. American Society of Clinical Oncology, Alexandria, VA.)
Breast cancer patients want coordinated, less frequent, but good quality care. Gulliford and colleagues found that of 196 patients randomized to regular follow-up vs. follow-up only after mammography, women preferred the less frequent follow-up by two to one.(Gulliford T, et al. BMJ 1997;314:174-177.)
What are the cost implications?
We may be spending as much as $1 billion a year for follow up tests in breast cancer alone, extrapolating from prior studies. Women averaged $362 in test costs the first year, with 36% due to chest radiographs, bone scans, and blood tests. MRIs and CATs accounted for 30%. (Simon MS, et al. Breast Cancer Res Treat 1996;40:119-128.) It is very reasonable to ask what our patients receive from that money and whether it could be spent more wisely.
What is this "disease management" concept?
The idea is to take the best care of patients by explicitly stating the best care, then doing it. Simple, right? But how many of us have had "hands-on" testing in breast exam, or have been instructed or tested on the most efficient way of follow up?
Disease management comes in when we try to make the service efficient and less costly. For instance, in many systems, the patient will see her gynecologist, internist, surgeon, medical oncologist, and radiation therapist. Hillner and colleagues have shown that in these fee-for-service systems, about 30% of women do not get follow-up mammograms, and many get unneccassary bone scans and chest radiographs, sometimes even CAT scans. (Hillner BE, et al. Breast Cancer Research and Treatment 1996;40:75-86.)
We can do a good job of follow-up care by stating what needs to be done, then willing it to get done each visit. Following is a good list of questions to ask and physical exams to perform.
History Questions
• Have you had any headaches, weakness, or incoordination?
• Do any bones, or your backbone, hurt?
• Have you had any cough or trouble breathing?
• Any lumps or bumps anywhere?
• Any pain in your stomach?
ExamNeck, supraclavicula, and axillary lymph nodes
• pound on all long bones and vertebrae
• exam, palpation of both breasts and breast scar
• lung exam for crackles
• check liver size
• observational neurologic exam (gait, station, reflexes)
And, we can willfully coordinate the care of patients. For instance, among the doctors involved, responsibility (and accountability) for exams and mammograms should rest with one person. And there is no reason for multiple doctors to see the patient. The local expertise will vary: in some cases medical oncologists will not have the training to examine radiated lumpectomy breasts, and radiation oncologists or surgeons will not have the training or interest in surveillance for adult medical illnesses. But, each patient should have one person in charge.
We can also be mo.re efficient. For most patients, the follow-up care can be done within the framework of a level one uncomplicated visit. Positive answers may entail a more thorough review of systems, but just documenting a review of systems to justify a level three or four visit is not needed (or ethical). Just think of the money that we can save Medicare or Blue Cross!
We can also be circumspect about our specialist nature. The evidence is that trained primary care doctors have the same outcomes as specialists. (Grunfeld E, et al. BMJ 1996;313:665-669.) There were not more spinal cord compressions or missed curable recurrences among the group followed by primary care doctors. If this study holds, then there will be evidence that training and interest, not specialist qualification, are what makes the difference.
Finally, we can do better patient education. In the absence of good materials, I wrote my own, summarized here. (I will E mail the full text to those who want to modify it. "[email protected]")
"There are helpful tests and ones that are not yet proven helpful. I want us to concentrate on doing the known helpful ones. Right now, there are no blood tests reliable enough to recommend routinely. These are the known helpful tests I want you to do, since women find 80% of recurrences themselves.
"Look for, and report to me, any of these things. Many are not breast cancer, but I would rather know about them than have you worry about them for weeks until your next appointment:
• lumps or bumps or red, scaly areas in the breast or scar
• lumps under the armpit or over the collarbone
• trouble breathing
• headaches, coordination problems
• bone, backbone, or chest pain.
"And do breast self exam monthly, and get your mammogram done yearly."
What about the patient who demands testing?
You may be forced to "cave" as I sometimes do, but more often, the patient will understand your rationale if you give them information. I have given several patients the Journal of Clinical Oncology articles. And when patients ask "You mean I am not curable if my breast cancer comes back? Even if you find it five months sooner?" I tell them the truth.
Take home message
We can do a better job of breast follow-up care. The Medicare study showed substantial variation, some of which may be harmful. Adherence to these clinical practice guidelines will improve care and lower the cost.
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