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The Stops and Starts of a Breast Cancer Survivor’s Journey

Getting rid of the disease is just the first step toward total recovery

Second Opinion

After surgery and immediate therapy for breast cancer, patients still have a lot of emotional and physical healing to do. The effects of breast cancer and treatment will continue after the initial treatment ends.

What defines a survivor? And what kind of future can a breast cancer survivor expect? 

Well, the answer to both questions is … it depends. Many factors contribute to how a woman feels, both emotionally and physically.

It's common for a woman to feel an emotional letdown once treatment is over. The crisis is over, but a lingering sense of anxiety remains. New stressors can enter the picture, too. Friends and family might have unrealistic expectations about how fast everyone concerned can return to their former lives. And after facing one of life's greatest challenges some women find their "before" life goals no longer fit. 

Successfully negotiating the process takes courage, humor and a large measure of patience, starting with some realistic expectations.

It's not possible to "flip a switch" and immediately go back to a former life at full throttle. The body is in repair mode and women have to pace themselves.  It may take a year or more to regain a sufficient level of energy and sense of well being.

While there's a huge relief in being done with treatment, it can also be frightening. Women worry that cancer cells may remain and, without ongoing treatment, will be free to flourish and grow. They may experience "separation anxiety" from their oncologist. Every headache, cough or pain can take on ominous significance. The truth is a regular schedule of follow-up visits with your primary care physician is fine, and perhaps even better for you. According to a study published in the Journal of Clinical Oncology, there's no difference in long-term outcomes between ongoing surveillance by an oncologist and a primary care physician. And, a primary care physician's role is to take care of the whole person.

In the first year of recovery, women need an extra level of comfort and reassurance in other areas as well.

They must cope with the longer-term physical effects of treatment. For instance, even after tissue-sparing surgery or reconstruction, breasts usually look different than they did before. They feel different after radiation. Some women experience lymphedema and chronic pain in areas that have been radiated. Mental changes, or "chemobrain," can result in problems with memory and the ability to focus. And ongoing treatments to prevent the recurrence of breast cancer, like tamoxifen, can have their own set of side effects.

Returning to sex and intimacy can be intimidating. Some women have enormous concerns related to body image and self-esteem. Some may have been thrown into early menopause and experience all the associated sexual issues, like vaginal dryness, reduced libido and much less or absent response in places in the body that used to be hypersensitive. They have to relearn what works for them.

Life after breast cancer is a different part of life and getting used to whatever it will be takes a while. The journey's easier when women:

  • Are honest and open with their loved ones about what they feel.
  • Lean on others for the help they need.
  • Learn to care for themselves the way they care for others.

Dealing With Post-Cancer Issues

Women work through issues related to breast cancer in different ways. The best thing a woman who has had breast cancer can do is to take the same routine health maintenance steps recommended for all of us.

After surviving breast cancer, most women find that "normal" is usually not what it was before. Many speak about finding their "new normal."   One of the major issues in achieving that is developing a plan and a philosophy around fears that the cancer might recur.

Yes, women who have had breast cancer are at risk for getting it again. However, while about 25 percent of women are likely to have a recurrence in their lifetime, it's important to realize that this also means that 75 percent of them won't develop cancer again.

Many factors contribute to breast cancer recurrence so the risk of recurrence is different for every woman. Women should talk to their doctors about their personal prognosis.

The good news is that the trends are going in the right direction. The breast cancer death rate is dropping as more women get regular mammograms and doctors detect cancers at earlier stages when treatments are most successful. Localized cancer that has not spread to lymph nodes or other locations has a five-year survival rate of 97 percent. And today, chemoprevention drugs, like tamoxifen, are proving to be very effective in preventing a recurrence of cancer in patients with hormone-receptor positive breast cancer.

There are many steps women can take to improve their chances of staying healthy.

The first is to fully understand their prognosis for recurrence, the potential long-term side effects of their treatment and all associated options. If a woman's history is suspicious for metastasis or long-term treatment side effects are expected to be significant, more intense monitoring may be recommended. 
Breast cancer survivors should be religious about adhering to a regular schedule for well doctor visits, including those for clinical breast exams and mammograms. Research has shown that survivors who get a new primary tumor in either breast have the same prognosis as any other person with a new primary cancer, so early detection is crucial. And, just like everybody else, breast cancer patients and survivors still need Pap smears as well as screening for other diseases.

Most important, women must refocus on taking care of their general health. The primary cause of death in women who have had breast cancer is not cancer; it's cardiovascular disease, the leading cause of death for women over 50. If women work toward a healthy lifestyle — following a balanced diet and maintaining an appropriate weight, exercising regularly, not smoking and getting appropriate sleep — they've got it all covered.  While healthy living can't guarantee a disease-free life, it goes a long way toward optimizing the odds.
The Chance of a Recurrance

Surveillance for lingering physical and emotional effects of breast cancer becomes part of a patient's lifelong routine. But that does not mean she shouldn't live a full life. 

Breast cancer survivors will tell you that healing is not an event, but a journey with many stops and starts along the way.

The primary concern of most survivors is to be reassured that the cancer won't recur — that they can, at some point, stop looking over their shoulders. Five-year survival rates are the most frequently published data because 50 percent of breast cancer recurrences develop in the first three years after diagnosis. But breast cancer can recur even after 20 years, and the well-known propensity for delayed onset of metastatic disease with breast cancer makes it a lifelong issue. That means that women must learn to cope with a sense of uncertainty and lack of control that may diminish over time but never completely goes away.

Other emotional issues can be almost as challenging. As many as 30 percent of women who have had breast cancer suffer from prolonged anxiety and depression. For some women, the breasts are an essential source of female self-image. Cancer of the breast may seriously affect their perception of identity. They may experience feelings of decreased attractiveness and fear that their partners will abandon them. Survivors can experience profound feelings of guilt. Women worry that they may have done something to cause the disease, that they may have passed a genetic predisposition for the disease to their daughters, that they have been a burden to their caregivers and even that they survived the disease and others didn't.

Finally, continuing physical effects, like problems with sexual function, fertility, pregnancy, menopause and lymphedema, can be draining. A new study reports that although most breast cancer survivors do not experience long-term fatigue, 1 in 5 still feel tired up to 10 years after diagnosis.

How do women get through it all and create a really good life for themselves? Survivors who make the transition have several things in common.

  • They confide in someone, whether a partner, a friend or a professional, about their feelings. People who keep their anguish to themselves tend to develop more symptoms and suffer more pain than those who share their feelings.  

  • They recognize (and internalize) that even really healthy people get breast cancer. They are not to blame.

  • They recognize (and internalize) that their breasts do not equate to who they are.  

  • They allow themselves to grieve; then they get up, dust themselves off, and persevere.

  • They build stronger relationships their partners, their children and their friends through open and honest communication.

  • They attempt to control only what they can control and let the other stuff go.

Amazingly, some women come to believe their breast cancer was a "gift." They find strength in themselves that they never knew existed. They learn empathy for others to a degree they never expected. They learn how much other people care about them. They learn to embrace each day and live in the moment. They seek and find new meaning in their lives.  

In short, they triumph over breast cancer.

This article reprinted with permission from Second Opinion, a public television health program hosted by Dr. Peter Salgo and produced by WXXI (Rochester, N.Y.),  West 175 and the University of Rochester Medical Center.

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