Anyone who has gone through breast cancer treatment has probably thought at some point: Is the disease gone for good?

Fortunately, most breast cancers don’t return. But there are exceptions.

When it comes back, or recurs, it can happen in the same breast or close by, in lymph nodes in the same general area, or further away in the body, such as in the bones or lungs.

Doctors check on things that make recurrence more likely. Those tests start when you first find out you have breast cancer, because the results can affect which treatment your doctor recommends. 

“We can’t predict recurrence with 100% certainty, but we can predict it with a substantially greater probability that we ever could have before,” says Dennis Sgroi, MD, co-director of breast pathology at Massachusetts General Hospital in Boston.

He points to major advances in the last 10 years, especially with breast cancer that’s sensitive to estrogen (or, as doctors call it, estrogen-receptor positive).

What Your Doctor Will Check

She'll consider certain details about you, like your age and whether you’re in menopause. She'll also check into things about your breast cancer, such as the size of the tumor and whether it has spread.

The goal is to stop the high-risk cancers before they come back, says Elizabeth Anne Comen, MD, a medical oncologist at Memorial Sloan Kettering Cancer Center in New York. She treats people with breast cancer.

“In general, the larger a tumor is and the more lymph nodes involved, the higher the risk of recurrence,” Comen says. “The biology of the cancer itself is important too -- specifically, what unique receptors are found in the breast cancer.”

For example, triple-negative breast cancers -- those without the estrogen receptor, progesterone receptor, or HER2 receptor -- can be more likely to come back.

After your oncologist goes through that information, he might order a test to get more info. That’s particularly true if the tumor has already grown considerably or spread. In these cases, the risk of recurrence is in a “grey zone,” Sgroi says, which means it’s hard to predict what will happen.  

There are several of these tests. But they don’t work for every type of breast cancer.

Oncotype DX is most commonly used in the U.S. It measures the levels of 21 genes in a sample of tumor tissue. Based on how the genes act, the results show a “Recurrence Score” between 0 and 100, which tells doctors not only the risk of recurrence in the first 5 years but also whether or not that person would benefit from chemotherapy. The test only works on tumors that are sensitive to estrogen (estrogen-receptor positive) and not in the lymph nodes.

Also, the MammaPrint tests for estrogen-receptor-positive or negative cancers at the time of diagnosis. The Breast Cancer Index, Pam50, and EndoPredict gauge the chance of recurrence in women with estrogen-sensitive tumors after five years. 

On the Horizon: Blood Tests

Researchers at the Translational Genomics Research Institute (TGen) are working toward making a blood-based test to help identify breast cancers that are likely to recur.

A test like this would be useful after the treatment is done, and there isn’t any tumor tissue left to test.

“If we can precisely determine who will recur, we can determine which women might need additional therapy, and then we can move quickly toward developing trials to test those new therapies,” says  Bodour Salhia, PhD, assistant professor in the integrated cancer genomics division at TGen.  

“Ultimately, our goal is to prevent metastatic breast cancer, which remains difficult to manage and is associated with more than 90% of breast cancer deaths.”

It may take several years to develop a blood test that doctors can use, Salhia says. 

What You Can Do

While scientists work toward better tests, your everyday habits may make a difference. For instance, you can exercise and stay at a healthy weight to help lower your odds of a recurrence, Comen says.

It’s also important to work with your doctor to fully understand what your risk is and what that means. Keep in mind that the risk of cancer coming back is different from survival rates. For example, a woman who finds out she has breast cancer, goes through treatment, and then has a recurrence 2 years after her original diagnosis may still go on to live for decades, if the recurrence is found early.

So keep up with all your follow-up appointments -- and if you have questions or concerns, ask.

“Doctor-patient communication with respect to understanding one’s individual risk of recurrence is key to helping patients make informed decisions about their treatment,” Comen says. “Dealing with a breast cancer diagnosis can be very confusing and scary for patients. It’s essential that they feel able to talk to their doctors about their fears.” 

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Important Safety Information

Patients should not take AFINITOR if they are allergic to AFINITOR or to any of its ingredients. Patients should tell their health care provider before taking AFINITOR if they are allergic to sirolimus (Rapamune®) or temsirolimus (Torisel®).

AFINITOR can cause serious side effects, such as lung or breathing problems, infections, or kidney failure. Some of these side effects can be severe and can even lead to death. Your health care team may have ways to help manage side effects that do occur. It's important to talk with your doctor or nurse about side effects you experience and the best ways to manage them. Serious side effects include:

Lung or Breathing Problems: Patients should tell their health care provider right away if they have any of these symptoms: new or worsening cough, shortness of breath, chest pain, difficulty breathing, or wheezing.

Infections: AFINITOR may make patients more likely to develop an infection, such as pneumonia, or a bacterial, fungal, or viral infection. Viral infections may include reactivation of hepatitis B in people who have had hepatitis B in the past. Patients may need to be treated as soon as possible. Patients should tell their health care provider right away if they have a temperature of 100.5°F or above, have chills, or do not feel well. Symptoms of hepatitis B or infection may include the following: fever, chills, skin rash, joint pain and inflammation, tiredness, loss of appetite, nausea, pale stools or dark urine, yellowing of the skin, or pain in the upper right side of the stomach.

Angioedema: Patients who take an angiotensin-converting enzyme (ACE) inhibitor medicine during treatment with AFINITOR are at a possible increased risk for a type of allergic reaction called angioedema. Talk with your health care provider before taking AFINITOR if you are not sure if you take an ACE inhibitor medicine. Get medical help right away if you have trouble breathing or develop swelling of your tongue, mouth, or throat during treatment with AFINITOR.

Kidney Failure: Patients taking AFINITOR may develop kidney failure. Patients should have tests to check their kidney function before and during their treatment with AFINITOR.

Delayed Wound Healing: AFINITOR can cause incisions to heal slowly or not heal well. Call your health care provider right away if your incision is red, warm, or painful; if you have blood, fluid, or pus in your incision; if your incision opens up; or if your incision swells.

Before taking AFINITOR, tell your health care provider about all your medical conditions, including if you:

  • Have or have had kidney problems
  • Have or have had liver problems
  • Have diabetes or high blood sugar
  • Have high blood cholesterol levels
  • Have any infections
  • Previously had hepatitis B
  • Are scheduled to receive any vaccinations. You should not receive a live vaccine or be around people who have recently received a live vaccine during your treatment with AFINITOR. If you are not sure about the type of vaccine, ask your health care provider
  • Have other medical conditions
  • Are pregnant or could become pregnant. AFINITOR can cause harm to your unborn baby. If you are able to become pregnant, you should use effective birth control while using AFINITOR and for 8 weeks after your last dose. Talk to your health care provider about birth control options while taking AFINITOR
  • Are breastfeeding or plan to breastfeed. Do not breastfeed during treatment and for 2 weeks after your last dose

Tell your health care provider about all of the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. Using AFINITOR with certain other medicines can cause serious side effects. Keep a list of medicines you take and show it to your health care provider when you get a new medicine. Especially tell your health care provider if you take St John's wort (Hypericum perforatum), medicines that weaken your immune system (your body's ability to fight infections and other problems), or medicines for:

  • Fungal infections
  • Bacterial infections
  • Tuberculosis
  • Seizures
  • HIV-AIDS
  • Heart conditions or high blood pressure

If you are taking any medicines for the conditions listed above, your health care provider might need to prescribe a different medicine or your dose of AFINITOR may need to be changed. Tell your health care provider before you start taking any new medicine.

Common Side Effects

The most common side effect of AFINITOR in treating advanced hormone receptor-positive, HER2-negative breast cancer was mouth ulcers and sores (67%). Tell your health care provider if you have pain, discomfort, or open sores in your mouth. Your health care provider may tell you to use a special mouthwash or mouth gel that does not contain alcohol, hydrogen peroxide, iodine, or thyme.

Other common side effects of AFINITOR include:

  • Infections (50%)
  • Rash (39%)
  • Feeling tired (36%)
  • Diarrhea (33%)
  • Loss of appetite (30%)
  • Nausea (29%), vomiting (17%)
  • Weight loss (25%)
  • Cough (24%), shortness of breath (21%)
  • Abnormal taste (22%)
  • Headache (21%)
  • Pain in arms and legs (9%), back (14%), joints (20%)
  • Swelling of arms, hands, feet, ankles, face, or other parts of the body (19%)
  • Nose bleeds (17%)
  • Fever (15%)
  • Constipation (14%)
  • High blood glucose (14%)
  • Difficulty sleeping (13%)
  • Feeling weak (13%)
  • Itching (13%)
  • Dry mouth (11%)
  • Hair loss (10%)

Other side effects that may occur with AFINITOR:

  • Absence of menstrual periods (menstruation). You may miss 1 or more menstrual periods. Tell your health care provider if this happens
  • AFINITOR may affect fertility in females and males, and may affect your ability to become pregnant if you are female or your ability to father a child if you are male. Talk to your health care provider if this is a concern for you

Tell your health care provider if you have any side effect that bothers you or does not go away.

These are not all the possible side effects of AFINITOR. For more information, ask your health care provider or pharmacist. Call your doctor for medical advice about side effects.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please see full Prescribing Information for AFINITOR, including Patient Information.

The brands listed are the trademarks or register marks of their respective owners and are not trademarks or register marks of Novartis.

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