Being diagnosed with any kind of recurrence can be devastating. All the feelings you experienced the first time are back. You may feel like you can’t trust your body, or you may wonder about your doctors and treatment in general. A recurrence is not your fault; it's the result of factors that we do not understand and cannot control. And no matter how much you second guess your treatment, you can't change it now
A cancer recurrence occurs when breast cancer cells reappear in the area around the breast (local or regional recurrence) or in other areas of the body (distant metastasis). For the most part, these are those microscopic tumor cells that presumably got out before your diagnosis and hid, somehow protected, from the systemic therapies you received. Then after a long while, conditions change and these cells wake up from their hibernation and begin doubling again. Another possibility is the surviving cells were put to sleep by hormone therapy or chemical menopause and then randomly develop a mutation that makes them wake up or become resistant to treatments.
In order to better deal with your recurrence, you need to know more about the nature of breast cancer recurrences. You also need to know if your recurrence is the same subtype as the original tumor. It’s possible to have had a hormone positive tumor initially and then develop a recurrence in the mastectomy scar that is no longer hormone positive. For this reason, it is always worth having your doctor biopsy the recurrence, if possible, to determine which type it represents.
There are five different types of recurrences
Local recurrences after breast conservation
These are unusual. When they do occur, it is usually in the area of the original tumor and an average three to four years after the initial therapy. The first sign of a local recurrence can be a change in how your breast looks or feels, which is why women often identify a recurrence themselves. Changes in the physical exam that occur more than one to two years after the completion of radiation therapy should always be looked into immediately with mammograms and MRI. Although MRI can be used to try to distinguish between a local recurrence and scar tissue, only a biopsy can show for certain. Usually a core needle biopsy is sufficient, though sometimes further surgery is necessary.
Once a local recurrence has been diagnosed, tests are done to see if there are signs of cancer elsewhere in the body. You can learn more about these tests here. If the cancer does not appear to have spread beyond the breast, then your doctor is likely to recommend a mastectomy, since the less drastic surgery and radiation didn’t take care of it. A lumpectomy may be possible, depending on the size of your breast, but we do not know how effective a second lumpectomy is in women who have had a local recurrence. The role of systemic therapy after a local recurrence in the breast is still not clear, but it is often considered in high-risk women. If your tumor is still sensitive to estrogen and you were on tamoxifen, it is reasonable to switch to an aromatase inhibitor, or vice versa. The role of chemotherapy, especially if you were previously treated with it, is not clear and is still being studied.
New cancer in the breast (new primary)
This type of recurrence typically occurs many years after the original cancer and in an entirely different area of the breast. Its pathology is often different—lobular instead of ductal, for example. These second cancers are not too common, but they remain possible as long as you have your breast. These should be treated as a completely new cancer, much as with new cancers in the opposite breast. Most often the local treatment will be a mastectomy, since you can receive radiation therapy only once to any area. However, the newer approaches of partial breast radiation may change this. The addition of chemotherapy and/or hormone therapy will depend on the size and biomarkers of the tumor.
Local Recurrence After Mastectomy
Local recurrence after mastectomy usually shows up as one or more pea-sized nodules on or under the skin near the scar. It may appear on the scar itself. After reconstruction a recurrence can appear at the suture line of the flap or in front of the implant. When it’s in the skin itself, it is red and raised. It’s usually so subtle the surgeon is likely to think at first that it’s just a stitch that got left in after the operation. Then it gets bigger and needs to be biopsied. That can be done under local anesthesia, since the area is numb. Reconstruction rarely, if ever, hides a recurrence. With implants, the recurrences are in front of the implant. With a flap, the recurrences are not in the flap itself (tissue from the abdomen) but along the edge of the old breast skin. Some women are told they have a local recurrence in the chest wall, which is inaccurate because it implies that the cancer is in the muscle or bone. But usually such a recurrence appears in the skin and fat where the breast was before, only rarely does it include the muscle.
The treatments for a local recurrence are also local. Most commonly, the lesion is removed surgically and followed by radiation to the chest wall if the woman has not previously had radiation. Occasionally larger areas are surgically removed, including sections of rib and breastbone. Although this approach has not been shown to increase survival, it can improve the quality of life by preventing further local spread, which can be difficult to manage.
Rarely, a woman has extensive local recurrence after mastectomy, with many nodules in the skin. They merge and act almost like a coat of armor across the chest and even into the back and the other breast. At this point we call it en cuirasse, a French word meaning “in casing.” This is because the tumor, which can be fairly limited, may block lymph vessels in this area and these, in turn, become scarred. Some women have large tumor masses on the chest wall that weep and bleed. Both of these situations are rare, but when they occur they can be very distressing.
A regional recurrence is one in the lymph nodes in the armpit (axilla) or above the collarbone. Now that we are taking out fewer lymph nodes from the armpit, it is possible that a cancerous node can be left behind. This is rare, though, occurring only in about two percent of breast cancers.
Further treatment to this area with either surgery or radiation often takes care of the problem, although systemic therapy may also be used. Regional recurrence in lymph nodes elsewhere, such as in the neck or above the collarbone, is more likely to reflect the spread of the tumor through the bloodstream. Akin to local recurrence following mastectomy, it usually warrants a more aggressive approach.
Distant recurrence (metastatic disease)
When a cancer spreads to a different organ, it’s known as a distant recurrence, or a metastasis. If a metastasis is detectable at the time of first diagnosis, the patient is described as being in stage IV.
As hard as it is to face a local recurrence, metastatic disease can be even more devastating. There are the same feelings that go with any recurrence, compounded by the knowledge that the chance of a cure is slim. The goal is to create the best quality of life for yourself in the time you have and, at the same time, maintain hope. Contrary to common belief, metastatic breast cancer is rarely an immediate death sentence, and women with metastasis often live for a number of years with good treatment, and with reasonable quality of life.
Find more information in Living with Metastatic Breast Cancer.
What Every Woman with a Cancer Recurrence Should Know
Learn how to talk to your children about cancer.
In general, it's wise to be honest with your kids, and to use the scary word cancer. If they don't hear it from you now, they're bound to find it out some other way—they'll overhear a conversation when you assume they're out of the room, or a friend or neighbor will inadvertently say something. And when they hear it that way, it will be a lot more horrifying for them. Children need to know they can trust you, and you don't want to do anything to violate that trust. Also, remember to listen to their fears. If you find it difficult to bring up the subject, there are children's books that can give you a place to begin.
Resources for parents with cancer include:
- CancerCare For Kids: provides free, professional support services for parents, children and adolescents affected by cancer, as well as information about helping children understand cancer and additional resources.
- Parenting with Cancer: A resource for parents with cancer and their family and friends.
- Parenting While Living with Cancer: Resources from Cancer.net
It's important to have a lot of support around you while you go through cancer treatment. And it's important to allow yourself to feel lousy. Cancer is a life-threatening illness, and the treatments are all emotionally and physically stressful; you need to accept that and pamper yourself a bit. You don't have to be Superwoman. Get help from your friends and family throughout the treatment. You may also want to consider joining a breast cancer support group. If there is no group in your area, or you don't want to meet in person, you might want to consider joining an online support group or bulletin board.
Know what you want from your doctor.
Today there is much more emphasis on doctors and patients sharing the decision-making process, and there are more options to choose from. Some women still want an "omniscient" doctor to tell them what to do. Others prefer physicians who will discuss everything with them. And still others want a great deal of information but prefer to defer to the doctor for decision making. There is no right or wrong style, so don't feel guilty if your needs are not the same as those of your friend or neighbor. Remember, it's about what style works best for you.
Here are some questions to ask yourself about your doctor and medical team:
- Do they listen?
- Do they sit down, look you in the eye, and connect with you?
- Do they solicit and answer your questions?
- Do they show you X-rays and test reports, and explain them if you ask?
- Do they allow you to tape the visit?
- Do they ask you whether you use alternative or complementary therapies?
- Do they suggest additional sources of education and support?
- Are they interested in new information you bring in?
- Do you feel like they are partners in this journey?
- Do they discuss clinical trials?
The answer to each of these questions should be "yes." If it's not, you should take the time to assess whether you feel you have the right doctor for you or if you should seek care from someone else. Cancer isn't easy. The last thing you need is a doctor who is going to make it even harder.
Seek out information.
The Internet is wonderful for searching for information, but you need to be a savvy surfer. Here are a few guidelines:
- Know who is sponsoring the site and whether they have anything to gain from the information given.
- Know the credentials of the person answering questions or giving medical advice.
- Check to see that the information is current.
- Look to see if the information is backed up by references in scientific journals.
- If information that you get on a site disagrees with what your doctor has said, print out the page and bring it in to discuss with the doctor.
Don’t go to the doctor alone.
Bring someone with you when you go to the doctor to learn about your options—a spouse or partner, a parent, a close friend. Ask them to take notes or record what the doctor is saying. Have them ask the questions you are afraid to ask.
Frequently Asked Questions
I’ve completed treatment and my doctor isn’t doing regular tests. Isn't there more we should be doing?
Many people wonder why women are not tested regularly—before symptoms occur—to determine if their cancer has spread.
It seems to go against reason to not do something to try to find metastases early. But the truth is that there is no evidence any of the tests—PET scans, CT scans, chest X-rays, or blood tests—make any difference in breast cancer survival. Contrary to what most people believe, finding metastatic disease early on does not make it easier to treat or more treatable. That's because we don't have treatments that can stop breast cancer once it has spread to other parts of the body. For this to change, we need to develop treatments that can cure cancer after it has spread, and that's what many researchers are trying to do.
The American Society of Clinical Oncology recommends that women have regular physical exams and mammograms after their breast cancer treatment is completed, but does not recommend routine X-rays, scans, and blood tests unless symptoms are present. Two randomized controlled studies found that none of the screening tests currently used in asymptomatic women with breast cancer provide a survival benefit over waiting for symptoms to develop. So why do doctors do these tests? They give a variety of reasons ranging from "it makes the woman feel better" to "I do it for other cancers, so it is just habit." But the bottom line is: If a woman learns her cancer has spread through these tests, it only means she will be living longer with the knowledge that she has metastatic disease, not that she will live longer than she would have if she were not diagnosed until symptoms developed.
So while it may seem like your doctor should be doing more, as long as you are having regular physical exams and mammograms, you are doing everything you need to do.
Should I have regular PET scans to look for signs of metastatic disease?
The published research indicates that PET scans can be beneficial to women and their physicians when they are used to monitor a tumor's response to treatment after metastatic disease has been found. However, there is no evidence that PET scans are valuable in an asymptomatic woman or that having regular PET scans would help women beat cancer. There are two reasons for this:
- The PET scan can only find metastatic disease that is at least two cm in size.
- Finding metastatic disease early, or earlier, does not make it more treatable.
It seems to go against reason to not do something to try to find metastases early. But the truth is that there is no evidence that any of the tests—PET scans, CT scans, chest X-rays, or blood tests—make any difference in breast cancer survival. Two randomized controlled studies found that none of the screening tests currently used in asymptomatic women with breast cancer provide a survival benefit over waiting for symptoms to develop. If a woman learns her cancer has spread through these tests, it only means she will be living longer with the knowledge that she has metastatic disease, not that she will live longer than she would have if she were not diagnosed until symptoms developed.
PET scans are probably best used to establish a baseline when there is known metastatic disease to assess and monitor how a tumor is responding to treatment. I agree with the recommendations put out by the American Society of Clinical Oncology and, like them, would not recommend that you have regular PET scans to look for signs of metastatic disease.
What is the CA 27.29 blood test? Should I have it done routinely?
The FDA approved the CA 27.29 blood test in June 1996. It is the first and only blood test that is specific to breast cancer. (The two other blood tests that oncologists may recommend for women with breast cancer, the CA 15-3 and the CEA, are tumor marker tests that are used in breast and other cancers.) The CA 27.29 test measures the level of CA 27.29 antigen, which is found in the blood of breast cancer patients. As breast cancer progresses, the level of CA 27.29 antigen in the blood rises. In theory, by monitoring CA 27.29 test results oncologists can determine if the cancer has spread to other parts of the body, which is called metastasis. [Important point: If breast cancer metastasizes to the liver, it does not mean you have liver cancer. It means you have breast cancer cells in your liver, and the treatment used would be treatment for breast cancer, not treatment for liver cancer.]
Unfortunately, the CA 27.29 test is not as reliable as we initially hoped it would be. In statistical terms, it is neither "specific" nor "sensitive" enough to accurately determine if metastasis has occurred. What does that mean?
If a test for metastasis is highly sensitive, it will be good at finding those women who have metastasis and it will produce very few false negatives (women who are told they have negative results when they really don't). A test needs to be highly sensitive to rule out disease.
If a test for metastasis is highly specific, it will be good at finding those women who do not have metastasis and it will produce very few false positives (women who are told they have metastasis when they really don't).
Since it is not highly sensitive or specific, the CA 27.29 test can go up for reasons other than metastasis, resulting in false positives, and it may not go up when there is metastasis, resulting in false negatives. The CA 27.29 test has been proven to be helpful in following increases in metastasis in women who have already been found to have metastatic disease, allowing doctors to better adjust treatment regimens.
In addition to having the CA 27.29 test, your oncologist may recommend that you have the CEA and CA 15-3 tumor marker tests done as well. Neither of these tests is highly sensitive nor highly specific either. If you choose to have any of these tests done it should be with the knowledge there is currently no test or scan that can reliably tell us whether a small number of breast cancer cells have gotten into, and have begun growing in, other parts of the body, and that the information you receive may not be accurate.
Should you have the CA 27.29 test done? The American Society of Clinical Oncology recommends against routine testing of markers after a breast cancer diagnosis. Some oncologists recommend that women have this test every three to six months with the hope that they will find metastasis early. The problem is that there is no evidence that finding metastases by a blood test before a woman has symptoms will improve her survival or quality of life. The treatment of metastatic disease is aimed at reducing symptoms and putting the woman into remission. It is hard to improve symptoms if a woman does not have any. Most women whose breast cancer has metastasized do not show any symptoms until the disease is quite extensive. Symptoms of metastatic disease include bone pain, shortness of breath, lack of appetite and weight loss, and neurological symptoms like pain or weakness or headaches.
There are a series of tests that can help find large amounts of cancer cells in other parts of the body. These are called staging tests (this is not the same as the stages of breast cancer), and include chest X-rays, which can find cancer in the lungs, blood tests that can determine if the cancer has spread to the liver, and bone scans, which can help ascertain if the cancer has spread to the bone. CT scans are also used to detect the spread of cancer to the liver, the lungs, a certain area of bone, or even your brain. Like the blood tests, though, these tests are not good at finding small numbers of cancer cells.
Ultimately, the only way to determine whether having routine CA 27.29 testing is right for you is to think about how you want to handle the aftermath of your breast cancer treatment and whether a test that has limitations will be helpful for you. Some women find reassurance in having the CA 27.29 test done; others find the thought of having the test stressful and choose to not have it done. There is no "right" choice. If you do decide to have the test done, here are a few things you should know:
- A normal CA 27.29 level is usually less than 38 to 40 U/ml (units/milliliter), depending on where the lab test is done.
- Because anything under 40 is considered normal, you shouldn't worry if it's 20 one time and then 30 another time.
- Just because the test result is higher than 40 it doesn't mean your cancer has spread. Endometriosis, ovarian cysts, first-trimester pregnancy, benign breast disease, and kidney and liver disease are just some of the noncancerous conditions that can raise your CA 27.29 level.
How will I know if my cancer has spread to my lungs?
Many women who have metastatic breast cancer develop lung metastases. Usually the symptoms are shortness of breath and/or a chronic cough. The symptoms can be fairly subtle, and they typically come on slowly, since the cancer has to use up a lot of your lungs before it compromises your breathing.
There are a couple of different places the cancer can appear in your lung. One is in nodules—usually several—that show up on a chest X ray. If it shows up in only one nodule, your doctor will want to do a needle biopsy or a full biopsy to find out if it's lung cancer or a breast cancer that has spread. (Lung cancer usually starts in just one spot, but a cancer that has spread to the lung through the bloodstream or lymphatic channels is likely to hit multiple spots in the lung.)
Another form of metastasis in the lung is called lymphangitic spread. In this situation, the cancer spreads along the lymphatics and instead of forming nodules it occurs in a fine pattern throughout the lung. This isn't all cancer. Some of the changes in the lung are due to a lack of lymphatic drainage and fibrosis in the lymph channels. This type of metastasis is subtler and harder to detect on a chest X ray, but it, too, will ultimately cause shortness of breath, since it takes up room and scars the lungs, making them less able to expand and contract and bring oxygen into your bloodstream.
The third way it can show up is through fluid in the pleura, the lining of the lung. (The pleura is a sack with a smooth lining around it. The lung sits inside of this sack so that it can move without sticking to the chest wall.) This usually indicates that the cancer has metastasized only to the pleura and not the lung itself. In this situation, the cancer creates fluid around the lung (effusion), and the fluid causes the lung to collapse partially. This, too, will result in shortness of breath.
For lung metastases, the treatment is usually systemic—chemotherapy or hormone therapy. If you develop fluid in the pleura, it can be treated by sticking a needle into the chest and draining the fluid. This works immediately, but frequently for only a short time. Often the fluid comes back right away. In order to prevent the reaccumulation, your doctor may want to perform a procedure that will fasten the pleura to the lung itself. However, often an effective hormonal therapy or chemotherapy will keep the fluid in the lung from reaccumulating, at least for a while. Occasionally women with reocurring fluid will have a catheter left in so that they can be drained as needed. However, many women with such fluid in the pleura will get permanent relief by a combination of local drainage, scarring of the pleura, and a systemic therapy.
Among patients who die of breast cancer, 60–70% have it in their lungs. The lungs are the only obvious site of metastasis in about 21% of cases.
How will I know if my cancer has spread to my liver?
The liver is the third most common site for metastases. The symptoms of liver metastases, which are often quite subtle, don't begin to occur until after the cancer has taken up a lot of room in the liver, and that takes some time to happen.
The symptoms are common—weight loss, loss of appetite, nausea, gastrointestinal symptoms, and pain or discomfort under your right rib cage. You may have some pain in the right upper quadrant of your liver, which occurs when the liver's covering tissue is stretched out.
A diagnosis of liver metastasis is often suspected from blood tests and confirmed by CT, MRI, PET scanning or, on occasion, ultrasound. The major treatment for extensive liver disease is chemotherapy, especially if your liver function blood tests are elevated. Hormone therapy can work well on hormone-sensitive and slower-growing liver metastases, and the decision to use it usually depends on the extent of damage present in the liver.
In certain kinds of cancer, like colon cancer, liver metastasis can be a single lesions or just a few, and thus on rare occasions can be cut out. But with breast cancer there is usually more than one spot involved and surgery becomes impossible. In the uncommon exceptions when there is only one spot, your surgeon will be able to remove part of the liver to relieve symptoms or use radiation therapy. But this is really a last resort when the patient has a large and painful liver that is not responding to chemotherapy.
There are also new techniques for a small number of liver metastases that involve putting hot (hyperthermia) or cold (cryosurgery) probes into the tumors and burning or freezing them. This can help the obvious spots but must be followed with systemic therapy to control the rest of the micrometastatic liver disease.
If you are in a lot of pain, your doctor may recommend that your liver be radiated, to shrink it. This is only typically done for particularly severe symptoms that are not responding to systemic therapy or for the rare case of a woman whose only apparent disease is in the liver. Another option may be to put chemotherapy directly into the liver through a catheter in the artery leading into the organ. This is typically done to treat metastases if the cancer doesn't respond to more comfortable forms of chemotherapy. Liver transplants do not work in this situation because the disease is usually more extensive, and not just in the liver.
About two-thirds of women who die of breast cancer have cancer that has metastasized to their liver, and about a quarter have it there initially.