Understanding Recurrent Cancer
Finally, treatment of your breast cancer is over. For the past number of months, the diagnosis and treatment of your cancer has been an active and tangible part of your everyday life. During your treatment, you may have undergone surgery, radiation therapy, drug therapy or a combination of these approaches. You’ve likely interacted with a team of health care professionals on a regular basis, at times even daily.
But when the flurry of treatment activity is over, you may wonder, “Now what?” Certainly, you’re grateful to be done with treatment, but now you may begin to worry about a cancer recurrence and find new concerns taking the place of old ones. Many questions may come to mind. Is there something that you can do to prevent the cancer from coming back or to catch it early if it does? How often should you see your doctor? Will you need to take tests? Which tests are most effective, and how often should you have them?
Monitoring for recurrent cancer is an important component of follow-up care. However, it’s only one part of a follow-up program. Other important goals include addressing complications of treatment, meeting physical rehabilitation needs, monitoring your overall health and providing you with psychological support. Addressing all of these needs will help you as you take on what can be a challenging endeavor — reclaiming your life and returning to your “normal” routines (see Chapter 22).
An important point to keep in mind is that while guidelines are established for routine follow-up care after breast cancer treatment, each breast cancer survivor is unique. Just as with diagnosis and treatment, you and your doctor will ultimately decide together what’s best for you once your treatment is complete.
One of the primary goals of follow-up care is to detect a possible return (recurrence) of your breast cancer. To understand which approach may be the most helpful in detecting a recurrence, it’s important to know a bit about recurrent cancer.
When a cancerous tumor is first diagnosed, the cancer is known as a primary cancer. Recurrent cancer refers to cancer that later develops from cells that originally came from the primary tumor. The cells weren’t visible at the time of diagnosis, and they weren’t eliminated during treatment to remove or destroy the primary cancer. Over time, the cells were able to multiply to a size where they could be found.
Risk of a recurrence is dependent on the size of the original tumor, the number of lymph nodes that contained cancerous cells (lymph node involvement) and other factors discussed in Chapter 11. Women with a very small tumor and no lymph node involvement have a lower chance of recurrence when compared with women with larger tumors or lymph node involvement.
Types of recurrences
Breast cancer recurrences are divided into three categories — local, regional and metastatic — depending on where the cancer returns.
Local
A local recurrence refers to the regrowth of cancer cells at the site of the original tumor. In women who had a previous lumpectomy, a local recurrence occurs in remaining breast tissue. Among women who had a mastectomy to treat a primary tumor, the cancer may recur locally along the mastectomy scar or in chest wall tissue. With a local recurrence, the cancer cells are still contained within the area where the cancer first began and may be responsive to local therapy such as surgery or radiation.
Sometimes, a new cancer — a new primary tumor — will develop in the other breast. Almost always, this new cancer is not a recurrence but, rather, a second primary cancer. The treatment of this cancer will depend on the characteristics of the cancer: size, lymph node involvement, hormone receptors and other factors discussed in Chapter 11.
Regional
When cancer cells travel from the site of the original tumor and settle in nearby lymph nodes — in the armpit or collarbone area — this is known as a regional recurrence. With a regional recurrence, the chances of treatment curing the cancer are lower than with a local recurrence, but a cure may still be possible.
Metastatic
In the case of a metastatic recurrence, cancer cells from the original site have traveled to distant parts of the body. The bones, lungs and liver are organs commonly affected by metastatic breast cancer. With metastatic recurrence, a cure generally isn’t possible, although effective treatment is available that can prolong survival.
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When cancer is detected in a breast that had previously been treated with a lumpectomy and radiation, two possible scenarios need to be considered.
One possibility is that the new tumor stems from cells that were leftover from the original tumor. When the cancer was originally treated, not all the cancer cells were removed or destroyed. This is known as recurrent breast cancer (in-breast recurrence). The other possibility is that the tumor is a new cancer that has developed in the breast. In this case, the cancer would be referred to as a second, or new, primary cancer.
In some instances, it can be difficult to determine if a new tumor in a previously treated breast is a recurrent tumor or a new primary tumor. Some factors, though, can provide clues. The tumor is more likely to be recurrent cancer if the following are true:
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Does early detection help?
The real question regarding tests to detect recurrent cancer is this: Will early detection — identification of recurrent cancer before it produces signs or symptoms — result in a woman living longer or better?
For localized and regional breast cancer recurrences, the answer seems to be yes. Treatments such as mastectomy and radiation may be able to cure the cancer. For regional recurrences, the chance of a cure is lower.
For a metastatic recurrence, no evidence, to date, suggests that early detection of metastatic breast cancer and early initiation of treatment results in longer life expectancy or better quality of life. This can be difficult to understand and accept, but the evidence is strong and consistent. If the cancer cells were able to survive the initial treatment of the disease and they’ve spread to other tissues, it’s highly unlikely that they’ll be destroyed with treatment for metastatic disease.
This harsh reality has come to have a significant effect on recommendations for follow-up care after treatment.
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Remember that you know your body best, and you know what feels normal and what doesn’t.
Most women discover a breast cancer recurrence themselves, before their doctors do. Therefore, it’s important to be aware of signs and symptoms that may suggest a recurrence.
If you experience any of the following, talk to your doctor. He or she can evaluate your signs and symptoms further, and together the two of you can decide on the appropriate plan of action.
Signs and symptoms of a breast cancer recurrence may include:
Check your breasts monthly to look for changes. If you have questions, ask your doctor for instructions on how to examine your breasts after cancer treatment.
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The purpose of follow-up care is to monitor your overall physical and emotional health, respond to complications from your treatment, and watch for indications that your cancer may have returned. Monitoring for recurrent cancer may sound like an involved process, but it includes fewer tests than you might expect.
Years ago, follow-up testing usually involved various blood tests, chest X-rays and bone scans. But recommendations now support limiting testing to medical histories, physical examinations and regular mammograms. Still, a wide range of practices exist: Some women receive a number of tests, and others only a few. This is because some women, and some doctors, don’t feel comfortable if they don’t take advantage of all the tests available.
Because of these differences, a women may wonder if she’s not getting enough tests — if her doctors should be doing more. The truth is, it’s not test results that most often lead to a diagnosis of recurrent cancer but rather changes in how a woman feels or the development of a new lump. Tests often used to help identify recurrent cancer — blood tumor marker studies, liver function tests and X-rays — haven’t been found to be effective or useful in prolonging survival or improving quality of life.
In the pages that follow, we’ll take a look at which tests are recommended by the American Society of Clinical Oncology — an organization that has developed guidelines for follow-up care after breast cancer treatment — as well as which tests this group doesn’t recommend.
Recommended tests
The American Society of Clinical Oncology recommends the following steps for routine follow-up care in women who’ve been treated for early-stage breast cancer and who have no signs or symptoms of cancer.
Medical history
For the first three years after completion of your initial treatment, you’ll likely see your doctor every three to six months. Chances are, your visit will begin with your doctor updating your medical history. You’ll most likely be asked about your general health since your last appointment, any changes in your body that you may have noticed and any concerns you may have. This is a good time to ask questions about issues such as diet, exercise and hot flashes, as well as questions regarding breast reconstruction or prostheses. You may want to write down your questions and bring them to your appointment.
After the first three years, your checkups may become less frequent. You may need to see your doctor only every six to 12 months for the next two years, and annually after that. If you were treated for noninvasive cancer, such as ductal carcinoma in situ (DCIS), your follow-up exams may be less frequent, such as twice a year for the first five years and yearly after that.
Physical exam
After your doctor takes your medical history, a physical examination generally follows. Like a medical history, a physical exam is recommended every three to six months for the first three years after primary treatment, every six to 12 months for the next two years and annually after that. For women who’ve had a lumpectomy and radiation therapy, breast examinations at six-month intervals may be recommended for up to 10 years.
During your physical exam, your doctor will check for any signs of cancer recurrence. This may include:
Your doctor may also listen to your lungs for any breathing abnormalities and check for liver enlargement and any sign of bone tenderness.
If you’ve been taking the medication tamoxifen and you haven’t had a hysterectomy, your doctor will likely recommend a yearly examination, because tamoxifen slightly increases the risk of uterine cancer.
Mammography
An annual mammogram is recommended for all women who’ve had breast cancer, with the exception of women who’ve had bilateral mastectomies. In addition to a medical history and physical examination, this is the only other procedure that’s routinely recommended after cancer treatment. A mammogram can detect a local recurrence in the affected breast or a new tumor in the other breast. Studies show there’s no advantage to doing mammograms more than once a year, provided no peculiar areas showed up on past mammograms, which might prompt more frequent examinations.
If you’ve had a lumpectomy, your doctor may want you to have a mammogram of that breast six months after completion of your radiation treatment and yearly after that. If you’ve had a mastectomy, you still need to have a yearly mammogram of your other breast. In the case of a bilateral mastectomy, there’s no need for further mammograms, but a chest wall examination is recommended.
Newer options
Among some women, particularly those with dense breast tissue, a tumor can be difficult to detect with standard mammography. One option for identifying hard-to-find tumors is magnetic resonance imaging (MRI), but the procedure has downsides, including intravenous injection of a dye. While very safe, there is a risk of rare side effects. MRI of the breast can also be overly sensitive, picking up “areas of concern,” which upon further testing, aren’t cancer. This results in not only unnecessary concern, but added expense due to the need for additional testing.
Another option being studied is called molecular breast imaging (MBI), which is discussed in Chapter 7. This new screening method identifies tumors in dense tissue that often aren’t visible with mammography. With MBI, a woman is given an injection of a low-dose, short-lived radioactive agent. This material accumulates in tumor cells more than it does in normal cells. Using a radiation-detecting camera, tumors show up as hot spots on the resulting image.
A Mayo Clinic study comparing MBI with mammography found that MBI detected three times as many cancers in women with dense breast tissue who had an increased risk of breast cancer. Another advantage of the procedure is that there’s not as much pressure placed on the breasts as in standard mammography. In addition, the procedure is less expensive than breast MRI.
It’s hoped that in the near future this test will be more widely available for use in detecting new and recurrent cancers.
Tests that aren’t recommended
For some women — perhaps even you — follow-up visits to the doctor involve a barrage of tests, including some or all of the following:
These tests were once more commonly performed in an effort to detect a cancer recurrence before it produced signs and symptoms. But there’s no evidence — despite multiple studies — that the tests prolong survival or improve quality of life. That is why these tests aren’t recommended by the American Society of Clinical Oncology.
In addition, these tests aren’t always accurate — they may miss signs of a recurrence or, just the opposite, suggest cancer is there when none exists. Test results that are wrong or inconclusive can cause a lot of needless stress and anxiety and create the need for additional testing.
A look at the research
A number of investigations have been done to try to assess the role of intensive testing in the routine follow-up care of women with no evidence of breast cancer after treatment. So far, the evidence indicates that such testing doesn’t have a significant effect in helping to prolong survival or improve quality of life.
Key studies
The strongest evidence against most follow-up tests comes from two large Italian studies that focused on intensive screening for breast cancer recurrences.
In the first study, 622 women had intensive follow-up testing including regular physical exams and yearly mammograms, plus chest X-rays and bone scans every six months. An additional 621 women followed the same schedule for physical exams and yearly mammograms, but received no other tests. This was known as the clinical follow-up group. The investigators found that even though cancer that recurred in bone and the lungs was detected earlier in the intensive testing group, there was no difference between the two groups in the detection of metastatic recurrences at other sites or in the detection of local and regional recurrences. And most importantly, there was no improvement in survival 10 years later. The conclusion was that intensive follow-up with chest X-rays and bone scans doesn’t offer any survival advantage to women with breast cancer.
In the second study, 655 women had intensive testing consisting of regular physical exams, yearly mammograms and bone scans, liver ultrasounds, chest X-rays, and blood tests every six months. Another 665 women were enrolled in clinical follow-up consisting of regular physical exams and yearly mammograms only. After six years, there was no significant difference in death rates between the two groups. The trial also measured quality of life and found no difference there either.
Blood tumor markers
Tumors can sometimes make unique proteins or other substances that can be measured in the bloodstream. These are usually referred to as tumor markers. To date, there’s no ideal tumor marker or combination of markers that’s specific for breast cancer, but some markers may suggest the presence of breast cancer. Examples include CA 15-3, CA 27-29 and carcinoembryonic antigen (CEA).
The question arises: Would these blood tests be helpful in detecting recurrent breast cancer? Currently, no available data suggest that the tests are accurate enough to detect a cancer recurrence early enough to improve a woman’s chances of survival.
In addition, these substances also exist in healthy people who don’t have cancer, meaning that a woman could receive a positive test result, indicating a cancer recurrence when, in fact, there’s no recurrence. This is what’s known as a false-positive test result. Such tests may also miss certain recurrences.
Finally — even when they work accurately — it appears that blood markers indicate a cancer recurrence only a couple of months before the recurrence would be detected in other ways, such as by a physical examination or the development of signs or symptoms.
As a result, the best use of blood tumor markers is to help diagnose a cancer recurrence when signs and symptoms suggest the cancer may be back.
Imaging tests
Some imaging tests may be better at detecting recurrent breast cancer than is mammography or ultrasound, but these tests haven’t been fully evaluated in clinical trials to determine their potential benefits. These include such tests as computerized tomography (CT) scans, magnetic resonance imaging (MRI) and positron emission tomography (PET) scans.
For women who aren’t experiencing any signs or symptoms of recurrent cancer, these imaging tests generally aren’t recommended because there’s no conclusive evidence that they’re beneficial.
However, if you do develop signs or symptoms suggestive of a cancer recurrence, your doctor may order an imaging test to help determine if cancer is present, and where.
One of the most difficult aspects of follow-up care after primary breast cancer treatment is dealing with the uncertainty of whether the cancer will come back. Some women feel that testing will help them deal with this uncertainty. When asked, most women say they want to be tested for a possible recurrence. And why not? Learning that your test results were normal can relieve a lot of anxiety and let you breathe a sigh of relief, at least until the next round of testing.
But testing has its pitfalls. Often tests will reveal a slight deviation or small abnormality that may need to be evaluated. And one test often leads to more tests, especially because very few tests are definitive enough to produce certain results by themselves.
For example, the results of your liver function test may come back a few points above the upper normal limit. Your doctor may tell you that this likely doesn’t signify a cancer recurrence, but you probably should have it rechecked in a couple of months just to make sure it isn’t going up. If the next test shows that the results are slightly higher, you and your doctor will likely want to investigate further and do a more definitive test, such as a CT scan. The CT scan might note a normal liver but suggest a worrisome shadow around the pancreas. An ultrasound might then be obtained, revealing a normal pancreas. You feel great relief when you get all of the results and learn that everything is OK, but waiting for them may have caused a great deal of additional and, in the end, unnecessary anxiety.
Musa Mayer, a breast cancer survivor and nationally known breast cancer advocate, illustrates this all-too-common scenario in her book After Breast Cancer. Below is an excerpt from the book.
It’s also important to remember that just as tests can sometimes find more than you want them to, they can also miss things, such as a cancer recurrence. Negative results aren’t a guarantee that no cancer is present.
Musa’s Story
My own love-hate relationship with testing came to a head about two years ago, when my oncologist referred me to a cardiologist because of some minor chest pain I had while exercising. A stress test showed nothing, nor did a thallium stress test, where a radioactive isotope helped with imaging the blood vessels. ...
... “It’s probably indigestion,” said the cardiologist, unconcerned. But if I wanted a further level of certainty, he told me, there was a new test available, called an ultrafast CT scan of the heart. ... I went ahead with the scan, without a thought in the world about how it might relate to my breast cancer history.
My coronary arteries were, blessedly, completely clear of calcium deposits. But in the report, the radiologist made notations about nodules in my lungs. And there were unexplained “densities” in my liver. … I remember sitting there with the report in my hand, my heart pounding. I could feel the blood draining from my face. Now what? I had no symptoms, and I felt fine. Or I had until I’d read the test results.
My oncologist thought the nodules would likely be from my smoking history, although I’d quit 25 years before. He recommended an MRI of my liver, to further check the “densities.” ... Days later came the definitive answer: I had hepatic cysts, a benign condition that probably would never have caused me any problems. Mixed with a huge sense of relief was a growing conviction that this sequence of tests, and the weeks of anxiety attending them, had probably been unnecessary. Yet once set in motion, the progression of events had been impossible to stop.
Margaret’s Story
Margaret Gilseth was diagnosed with breast cancer in 1957. In the decades that followed, she had multiple breast cancer recurrences and, as a result, ran the gamut of testing — blood tests and chest X-rays at almost every doctor’s visit. (Read more about Margaret in Chapter 16.) Then she began seeing a new oncologist who relied mostly on medical histories and physical exams. At first, Margaret was worried her doctor wasn’t taking good care of her. After talking with him and doing some research, Margaret, an author, wrote an article on follow-up testing, which appeared in an issue of the Journal of Clinical Oncology. Following is an excerpt:
We live in a culture that worships technology, and the voice of the testing is more credible than the voice of our doctor. Because testing is frequently performed, we are conditioned to believe that a test will detect an early recurrent cancer and bring hope for our survival. I believe it is imperative that patients be informed of recent research that pertains to their situation. We need to learn to discriminate as new research results are available — to re-examine our myths. …
… For me reassurance came with new understanding, and that came with learning the truth from my doctor. Routine testing for (recurrent) breast cancer is not very helpful, because it seldom detects cancer before a doctor can, and in those cases in which it does, there is no substantial benefit from early institution of chemotherapy. Nothing can take the place of a good doctor-patient relationship. As I learn to live with insecurity, the minimal assurance given by routine testing becomes irrelevant.
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In addition to the physical aspects of follow-up care, it’s important to remember the emotional and spiritual components. Adjusting to life after breast cancer takes time and requires the strong support of family and friends. Many women find it helpful to join a support group where they can learn about the experiences of other breast cancer survivors and share their own experiences. Another important aspect of caring for yourself after breast cancer is learning to trust your body to tell you when something is wrong.
For some women, adjusting to life after cancer treatment also means concentrating on those aspects of their lives they can control. This includes eating well, exercising, getting enough rest, and learning to deal with stress and anxiety.
For more information on living with cancer, see Part 3, “Life After a Cancer Diagnosis.”
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