Elyse Caplan remembers it well, that first conversation with her oncologist. She had just been diagnosed with stage IIB breast cancer, and they were discussing the game plan for treatment. If her oncologist mentioned "recurrence" -- the possibility that her cancer could return -- it was lost on her, she says.
"You sit through an hour-long appointment and take notes, but when the doctor says one thing that's very upsetting, you just freeze," she tells WebMD. "You're thinking, 'I'm going to lose my hair. How am I going to tell my boss, my kids?' You don't hear much after that."
Yet the risk of breast cancer returning is a critical issue that must be emphasized early on, she says. "The whole goal of treatment is to eradicate the disease and hopefully reduce risk of recurrence," Caplan tells WebMD. "But I'm not so sure doctors are speaking as directly to that point as they could be."
It's true, many oncologists don't directly address the subject of recurrence, says Victor Vogel, MD, co-director of the Biochemoprevention Program at the University of Pittsburgh Cancer Institute.
"I don't think we've come up with a good way to talk about it," Vogel tells WebMD. "Recurrence is fearsome stuff, disturbing. No one likes the uncertainty of it -- which patient will have a recurrence, when it will happen, how long we can control it, when they will die from it. So we hide behind the business at hand, stay busy with the treatments."
"We've got that one shot to get it right, in that initial treatment, so we focus on that," Vogel says.
The problem is, some women quit taking breast cancer medications, not realizing it raises the risk of cancer returning. Some are having serious side effects from the medications. Others are feeling fine and don't see the harm of stopping, he explains.
By quitting the treatment, they may put their lives in jeopardy. "If a patient completes the treatment, there is significantly less chance of recurrence," Vogel tells WebMD. "Oncologists need to do a better job of explaining that." If side effects are the problem, there may be options to provide relief, he says.
There are also lifestyle changes that women can make to either prevent cancer from returning or catch it early, so treatment can begin quickly.
Importance of Sticking With the Plan
When a woman is first diagnosed with breast cancer, her oncologists analyze the tumor closely -- already calculating her recurrence risk -- to determine the best plan of attack, explains Mark Pegram, MD, a breast cancer specialist with the Sylvester Comprehensive Cancer Center at the University of Miami School of Medicine.
More than ever before, today's breast cancer treatment is individualized -- tailored to the makeup of each patient's cancer cells, Pegram says. "If you have a large tumor that has spread to lymph nodes, the chance of recurrence is much higher than if it's smaller and has not spread. Even if you have a small tumor, it could be the tumor has characteristics that could make it aggressive."
In recent years, gene-based tests have allowed oncologists to also examine the "gene signature" of a tumor, which indicates recurrence risk. The newest such test is MammaPrint, which analyzes breast tumors for 70 cancer-related genes.
"We can pretty precisely predict 10-year probability of recurrence with gene profiles," Pegram tells WebMD. "These tests have revolutionized treatment planning for breast cancer patients."
Specific genes in the cancer cells tell oncologists how the tumor will grow, how likely the cancer is to recur, and generally how the tumor will behave. With this information, oncologists can shape treatment -- whether chemotherapy is necessary or not, and how aggressive it should be, he explains.
In this new era of breast cancer medicine, drugs and treatments can directly target specific types of cancer cells. Some drugs interfere with specific molecules involved in tumor growth. Others slow the growth of breast cancer cells that are fueled by the hormone estrogen. Others target the blood vessels that feed cancer cells.
That's why oncologists emphasize the need to stick with the treatment plan, Vogel explains. "All of this is about avoiding recurrence. The side effects of the drugs are a whole lot better than having breast cancer come back."
Toughing Out the Side Effects
Indeed, the side effects of breast cancer medications can be serious. On the telephone hotline at Living Beyond Breast Cancer (a not-for-profit agency), side effects are a common complaint. "We hear it all the time, women wanting to stop the medications because of side effects," says Caplan, who oversees the hotline.
"Doctors need to reinforce the fact that chemotherapy and other targeted therapies help to kill microscopic cancer cells, to prevent a recurrence," Caplan tells WebMD. "If you quit treatment, you don't know you've given yourself the full benefit. Talking about it will help women who are struggling to stay the course."
In recent years, studies have found that women are quitting two types of hormone therapy drugs -- aromatase inhibitors (Femara, Aromasin and Arimidex) and the anti-estrogen drug tamoxifen -- because of side effects.
One study suggested that nearly one-half of women taking aromatase inhibitors quit because of severe muscle aches and joint pains. The drugs block an enzyme the body uses to make estrogen, which fuels some breast cancers. They can substantially slash the risk of recurrence if taken for the prescribed length of time.
Another study showed that, although a five-year course of tamoxifen is typically recommended, some women took the drug for less than three years. One in 10 women filled 70% or fewer of their tamoxifen prescriptions -- which increased their risk of death by 16%. Women were not asked why they stopped taking tamoxifen, but it is known to cause difficult hot flashes, researchers note.
These drugs affect each woman differently, Vogel explains. "Some patients feel fine with the drugs, but some have really, really obnoxious side effects," he tells WebMD. "Some are just miserable with arthritis symptoms from aromatase inhibitors. Some women taking tamoxifen have really bad hot flashes, sexual symptoms. They also worry about risk of uterine cancer and blood clots, which put them at risk for stroke."
If side effects are bothersome, discuss it with your doctor, Vogel says. "There are a few options to reduce side effects." It may be possible to switch to a different medication in the same class of drugs -- one that produces fewer side effects, he adds.
For relief from serious bone and joint problems, painkillers and drugs like nonsteroidal anti-inflammatory drugs (NSAIDs) can help control the pain.
It's not always side effects that prompt women to quit treatment, Vogel adds. For some women, it's a false sense of confidence. "When women don't have bad side effects, they're feeling fine, and start thinking, 'Do I really have to worry about breast cancer?'" he tells WebMD. "They don't see the need to continue treatments."
Even women with "good prognosis" cancers have a slight risk of recurrence, Vogel says. "Others may have a higher likelihood of recurrence, but even the best-prognosis patients have the risk. You will have a significantly less chance of recurrence if you don't stop the treatment. That's what gives us all hope -- and why we convince our patients to stay on their prescribed treatment."
Lifestyle Changes to Improve Your Chances
Taking your medication every day is an important step in reducing risk. If you have trouble remembering, set up reminders and a routine, doctors advise. Place sticky notes at strategic spots. Take your pills at the same time every day (like breakfast). Mark a calendar when you take your pills. Use pill boxes to organize your medications. Ask people to remind you to take them. Set an alarm on your cell phone or pager.
What else can you do to lessen your risk of recurrence? Exercise and eating right is known to reduce breast cancer risk in the first place. A handful of studies suggest that lifestyle also affects recurrence, Pegram says. "These are things women can do to empower themselves, take control, make an impact in reducing recurrence."
Exercise: Several studies of different types of cancer have suggested that high levels of physical activitycan help lower risk of cancer recurrence. One study showed that women who exercise after breast cancer treatment lived longer and had less recurrence. "The exercise was the equivalent of 30 minutes brisk walking four days a week," Pegram says. "It clearly cut their risk of recurrence by about one-half. It was really extraordinary."
Low-Fat Diet: One large study showed that, with a strict low-fat diet, a group of postmenopausal breast cancer survivors cut their recurrence risk. The study involved more than 2,400 women, all with early breast cancer. Those who cut their dietary fat from 29% to 19% of their total calories were about 21% less likely to have a recurrence or die over the next six years, compared with women who continued eating their typical foods.
Just remember, nothing is certain, Vogel says. "Just like taking pills, a healthy lifestyle doesn't guarantee it won't recur. It may make it less likely. But you have to be realistic about your expectations."
Follow-Up: Watching for Recurrence
Once treatment has ended, it's important to stay in contact with your oncologist and surgeon.
Get Regular Exams. Oncologists typically follow patients every three months during the first two years, then every six months after that. During this time, women should have regular mammograms, even if they had a mastectomy, says Vogel.
Pay Attention to Your Body. When breast cancer returns, it will be one of three types -- local, regional, or distant. A local recurrence in the breast has "a high likelihood of cure," Vogel tells WebMD. But a regional recurrence in the chest wall or skin -- or a distant metastasis in the bones, brain, liver, or lungs -- becomes life-threatening.
It's important to watch for symptoms, says Pegram. "The most important thing, be observant. Know your body, know what's normal for you. The symptoms can be very subtle. If anything is out of the ordinary -- distinctly unusual and won't go away with the usual over-the-counter remedies -- get it checked out."
Symptoms to watch for:
- A breast lump or skin changes, redness, nipple discharge
- Swollen lymph glands
- Unexplained bone pain or tenderness that does not go away. "We all have aches and pains, but it's not everyday aches and pains I'm talking about," Pegram says. "This is unrelenting pain that keeps you awake at night, that doesn't respond to analgesics [pain medications], that is in the spine, skull, or ribs."
- Jaundice (yellowing of the skin, whites of the eyes)
- Fatigue
- Fever
- Breathing difficulty, a new cough, pain with breathing
- Persistent abdominal pain, weight loss, uterine bleeding
Don't Over-Think It
Your emotional well-being deserves top priority during this time. Finding activities you enjoy can boost your mood and your self-confidence, and reduce stress. If you exercise, you will get fitter and stronger -- plus reduce fatigue.
"Don't worry incessantly," Pegram says. "It takes some judgment and tincture of time to sort these things out, to know what's a symptom of recurrence and what is not."
Vogel is optimistic. "Most people are going to do OK with breast cancer. They get mammograms, get an early diagnosis, then follow their doctor's advice on treatment. Most people are going to do fine, most won't die of breast cancer. Remember, breast cancer mortality rates have been steadily going down for the last decade -- steadily."
