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July 2012 Ask the Expert: Follow-up Testing

During the month of July, Living Beyond Breast Cancer expert Nancy U. Lin, MD, answered your questions about follow-up testing for early-stage and metastatic breast cancer.

For more information, on follow-up testing, you can also  visit the website of the American Cancer Society.

Should my doctor and I be considering whole breast ultrasound or breast MRI?

I had a mastectomy with reconstruction of my left breast. I have kept my right breast and have an implant under it to balance things out. What follow-up testing is recommended for me? 

I have been getting mammograms regularly for the past few years. I am worried about the cumulative effect on my long-term health. What is your opinion? 

Is the CA-15 cancer marker blood test and CT scan together the best to use for determining the next type of treatment after several recurrences and for maintenance? I was diagnosed in 1999 at stage III, and [I’ve been] at stage IV now for more than eight years.

How often should I see my oncologist for follow-up tests? What blood tests and scans are done to watch for recurrence?

Is follow-up care different for aggressive types of early-stage breast cancer?

What signs and symptoms might suggest the breast cancer has spread?

How do you advise your patients about fear of recurrence?

In metastatic, HER2 positive breast cancer, how do you monitor the brain to make sure breast cancer hasn't spread there?

What follow-up scans do I need after a bilateral mastectomy?

How often should I get scans for metastatic breast cancer? Is it safe to get “leap frogging” scans?

Question: I had stage I invasive ductal carcinoma that was successfully treated by lumpectomy, chemotherapy, radiation and hormonal therapy (five years of tamoxifen followed by five years of Femara). I will celebrate 15 years without recurrence this December. I do get annual bilateral diagnostic mammograms, but because I have moderately dense breast tissue, I also wonder whether another imaging modality might be more prudent. Should my doctor and I be considering whole breast ultrasound or breast MRI?

Dr. Lin: This is a very common question. You should continue with annual bilateral mammograms. The American Cancer Society has issued guidelines to help doctors and patients think about when to consider breast MRI.  Breast MRI is recommended if you are at high risk, including if you:

  • Have a known BRCA1 or BRCA2 gene mutation
  • Have a first-degree relative (parent, brother, sister or child) with a BRCA1 or BRCA2 gene mutation and have not had genetic testing yourself
  • Have a lifetime risk of breast cancer of 20 to 25 percent or greater, according to risk assessment tools that are based mainly on family history (see below)
  • Had radiation therapy to the chest when you were between the ages of 10 and 30 years
  • Have Li-Fraumeni syndrome, Cowden syndrome or Bannayan-Riley-Ruvalcaba syndrome, or have one of these syndromes in first-degree relatives

There is not enough evidence right now to recommend routine breast MRI in women with moderately dense breasts.  I do discuss the pros and cons with women who have extremely dense breasts, but I take these on a case-by-case basis while also taking into account other factors.  Breast MRI is not routinely recommended because it increases the risk of “false positives,” meaning there is a higher chance that it may show an abnormality that, after additional testing, turns out not to be cancer.  

I do not recommend whole breast ultrasound for screening purposes. There is a lot of variability in the quality of whole breast ultrasound, and there have not been convincing studies of its benefit.

Question: I had a mastectomy with reconstruction of my left breast following a diagnosis of carcinoma in situ in 2011. I have kept my right breast and have an implant under it to balance things out. I am 36 and wonder what follow-up testing is recommended for me. I did genetic testing and do not have it.

Dr. Lin: When you say you “do not have it,” I assume you mean you were tested for the breast cancer genes BRCA1 and BRCA2 and were found not to have any changes in these genes. You should be followed up with a right breast mammogram once a year. 

Because of the implant, your radiologist may take additional pictures at the time of your mammogram in order to more fully look at your breast tissue. In some cases, if the implant prevents adequate pictures to be taken with mammography you may be advised to undergo breast MRI in addition to the mammogram, but this is often not necessary. You should also have a breast exam periodically in the office—this can be performed by your primary care doctor, gynecologist, breast surgeon and/or medical oncologist.

Question: I am 36, and I have been getting mammograms regularly for the past few years. I am worried about the cumulative effect on my long-term health. What is your opinion? I have a small, dense right breast with an implant under it and a reconstructed left breast with an implant also.

Dr. Lin: It is true that mammograms are associated with a very small amount of radiation exposure, however this amount is not thought to increase the risk of breast cancer.  

Question: Is the CA-15 cancer marker blood test and CT scan together the best to use for determining the next type of treatment after several recurrences and for maintenance? I was on erubilin for seven months, but the CT scan showed the masses (three, and one in particular) in my lungs had grown from the previous one, and my cancer marker went up into the 70s. My doctor changed my treatment to Ixempra in Feb. 2012, and June's CT scan showed the masses were smaller and the cancer marker was down to 57. I have been on so many chemotherapy treatments that I worry there won't be anything left to treat me with. I asked my doctor if I should go to MD Anderson in Houston, and he said … it is my decision whether to seek alternative treatment there and [that he] will provide all the info I would need. I have been battling this for 14 years, my doctor has done everything possible and I'm STILL here!!  I was diagnosed in 1999 at stage III, and [I’ve been] at stage IV now for more than eight years.

Dr. Lin: First of all, congratulations for living with stage IV cancer for more than eight years, and I hope very much that you will have more years to come. While I can’t give a proper opinion on your specific situation without seeing you in person, I can comment about the use of tumor markers and CT scans in evaluating stage IV breast cancer.

In terms of determining whether a treatment is working in women with metastatic or stage IV breast cancer, doctors look at many factors, including: 1) tumor-related symptoms, 2) results of scans, 3) physical examination findings, 4) side effects of treatment and 5) tumor markers. 

The three most commonly used tumor markers in the U.S. are the CEA, CA-15-3 and CA 27-29. One is not necessarily better than the other—some hospitals run the CA 15-3 and others run the CA 27-29.  Not all women with metastatic cancer have elevated tumor markers, so they are not helpful in all women. In addition, they are not recommended in women with stage I, II or III breast cancer.

Together, you and your doctor can determine whether or not you are benefitting from your current treatment. If your masses are small and your tumor marker is down, you are probably benefiting, though I can’t give you a definite answer to your question without seeing you in person.

As long as your current treatment is working, there is no reason to switch treatment. However, if/when your current treatment stops working I would encourage you to consider seeking a second opinion particularly if you are interested in participating in clinical trials. There are many new treatments being developed for breast cancer as well as trials for women of all stages.

Question: What is the standard for three-month checkups with the oncologist? What tests are run? What do they look at in the blood work that can indicate recurrence?

Dr. Lin: I am assuming you had a diagnosis of stage I, II or III breast cancer and completed chemotherapy and radiation, if either were necessary. You may still be taking hormonal therapy with tamoxifen, anastrozole (Arimidex), exemestane (Aromasin) or letrozole (Femara). If so, your oncologist is now transitioning you to the survivorship phase of your breast cancer care.

Typically, oncologists see patients every three to six months, depending on patient needs, symptoms, etc. I typically see patients two to three times the first year and then twice a year thereafter if things are going well.

Although it may seem counterintuitive, other than yearly mammograms and physical examination at each visit, I do not do routine scans or blood tests to look for cancer recurrence. Two large studies compared women followed with usual care (that is, doctor’s visits, physical examination, review of symptoms, mammograms) to women followed with “extra” testing (that is, blood tests, liver scans, bone scans, chest X-rays). These studies found no difference in a woman’s chances of survival or length of survival after breast cancer with the “extra” testing. Even with patients in the “extra” testing group, most recurrences were found between tests, when a woman brought a symptom to the doctor’s attention or a doctor noted something during a clinic visit. So, all the professional oncology organizations actually recommend AGAINST routine blood work or scans as part of follow-up, with the exception of mammograms.

This can create anxiety. I encourage you discuss your concerns with your doctor. In addition, it is often useful to have a discussion about the types of symptoms that should prompt a call to your doctor.

Question: Is there a difference in follow-up care for patients with more aggressive types of early-stage breast cancer? 

Dr. Lin: There is generally no difference in routine testing. That is, patients with more aggressive types of cancer have not been shown to benefit from extra blood tests or scans.

One difference is I worry more about symptoms in patients who had more aggressive types of cancer, or in patients who had a higher stage of breast cancer at diagnosis, and I would be more likely to order tests if that patient had new or worrisome symptoms.

Question: What signs or symptoms should a breast cancer survivor be alert to for possible metastasized cancer? I don't want to run to the doctor for every ache and pain, but I don't want to overlook anything either.

Dr. Lin: This is a great question. In patients with metastatic breast cancer, the most common locations of metastases are bone, liver and lung. Here are some symptoms to watch for:

Bone. The bones of concern are the ribs, backbone and hips. The small bones (elbows, fingers, knees, ankles) are very rarely the first place breast cancer travels, so they cause me much less worry. If you have very severe pain that causes you to limp or wakes you from sleep, you should call your doctor’s office, even if the pain has only been present for a few days or less. If you have mild to moderate pain, you can often “wait it out” for a few weeks, but if it persists, call your doctor. Bone pains are very common as people get older, but they initially can cause a lot of anxiety. Over time, if you talk to your doctor about symptoms you have, you will become more comfortable with the types of symptoms that are truly worrisome.

Liver. Your liver is located on the right side of your abdomen, just below your ribs in the front of your body. If you have pain there, or notice yellowing of your skin or your eyes, you should call your doctor.

Lungs. If you notice blood when you cough, a cough for no reason (a cold or allergies), or shortness of breath, you should call your doctor.

Brain. The brain is rarely the first location of recurrence. If you have new or worsening headaches, especially if they are associated with nausea, a feeling of the world spinning, or problems with balance, you should contact your doctor.

Question: What suggestions do you have for patients who fear recurrence?

Dr. Lin: Fears of recurrence are normal and natural and very common among breast cancer survivors. In fact, I find that for many of my patients, there is a “rebound” in the level of worry about recurrence when they complete chemotherapy or hormonal therapy, because they now have time to think about these worries as opposed to focusing on just getting through the next round of treatment.

There is a spectrum of worry about recurrence. One question is how much fears of recurrence affect a patient’s overall quality of life and ability to live life fully. For patients whose fear is life-paralyzing, I often encourage them to seek out a therapist who suits their style, whether with cognitive behavioral therapy (learning skills to cope with feelings and situations), help in coping strategies, or discussion of past and present life experiences that influence the ability to cope with the fear.

In most patients, the fear goes on the back burner much of the time but comes out when a new symptom appears, or when one sees an unexpected story in the media, or when other events happen to bring out worries again. For this, it can be very helpful to establish a strong support network, such as a close friend, spouse, support group, social worker or therapist who you feel can really empathize with your fears, not dismiss them, and yet help you work through them.

Question: I have stage IV inflammatory breast cancer and have been on Herceptin for almost six years. I know Herceptin cannot get to my brain. How does a patient or doctor monitor the brain to be sure the cancer isn't spreading there?

Dr. Lin: This question is somewhat controversial, and different doctors have different opinions. The way to monitor the brain is to do routine brain scans, such as MRI or CT, in patients with no symptoms. There are potential upsides—finding out about cancer spread perhaps a bit earlier—but also definite downsides. Sometimes the findings are not cancer but need to be tracked down, causing anxiety; no proof that brain scans improve survival; and side effects of treatments for cancer in the brain.

The standard approach is not to do scans. The best thing to do is discuss your concerns with your doctor. Ask to discuss the potential pluses and minuses for you given your specific situation, and then make a decision together about whether to pursue scans.

In my practice, I do not order brain scans routinely. However, I have a low threshold to order a brain scan if patients have worrisome symptoms, and I discuss the issue with patients. From time to time, I do consider brain scans in selected patients but on a case-by-case basis. 

Question: Once a young woman has had a bilateral mastectomy, her chest is no longer x-rayed. Shouldn’t there be some kind of scan or x-ray done—for instance, three to five years after the removal, to make sure no cancer cells were left behind and growing? This would really give an individual peace of mind.

Dr. Lin: Studies show that bilateral mastectomies reduce the risk of a new breast cancer by more than 90 percent. If a woman previously had breast cancer, her doctor will examine her carefully at each clinic visit, specifically paying attention to the skin over the chest, the lymph node areas and, if she had her breast rebuilt, the reconstructed breast.

Scans or x-rays have not been shown to be effective or necessary to look for recurrences of cancer or for new cancers after bilateral mastectomies in patients who do not have any worrisome signs or symptoms.

Question: I was diagnosed earlier this year with metastatic breast cancer, extensive bone mets. I am taking tamoxifen and getting denosumab (Xgeva) and leuprolide (Lupron) shots. The initial diagnosis was from a PET scan. I had a bone scan at three months. My oncologist suggests that I have a CT scan at six months out and then another bone scan at nine months out, therefore “leap frogging” the scans. Is this sufficient? It seems that doing both the CT and bone scan every three months would be safer. I would hate to not know of a progression for six months.

Dr. Lin: This is a good question. It is difficult to provide specifics without treating you in person, but here are some general principles. 

It can be confusing because the frequency and type of scans for patients with metastatic breast cancer is based on the location and amount of disease, symptoms, lab tests, etc. It can be different for each patient, and even different in the same patient, depending on the clinical situation. 

Commonly, scans are done every two to six months. For patients receiving chemotherapy who have a lot of cancer in the liver and abnormal liver function, doctors may order a CT scan after two months of treatment to make sure things are moving in the right direction, and then reduce the frequency of scans thereafter. For patients with mostly bone metastases, scans might not need to occur as often. Every six months can be appropriate, especially if the patient has minimal or no symptoms, or if tumor markers or other blood tests are moving in the right direction. 

Although this timeframe feels like a long time to wait between scans for many patients, this is generally a safe approach as long as you are followed in the clinic and you bring to your doctor’s attention new symptoms should they arise. If you had any worrisome symptoms or major changes in blood tests between scans, your doctor will order an earlier scan.

In terms of “leap frogging,” it is more common to do scans at the same time—in other words, you could do both scans every six months—but “leap frogging” is also a fine approach. I encourage you to talk to your doctor about your concerns. Ask your doctor to explain how you will be followed and why this specific scan schedule was suggested.