You’ve had breast cancer, you’ve been treated for it, and now it’s time to get on with your life. But your life has changed and you have to adjust to your new situation on a number of levels.
Survivorship means being followed for the rest of your life. The American Society of Clinical Oncology (ASCO) has developed a breast cancer specific survivorship form, which contains important information about the given treatment, the need for future check-ups and cancer tests, the potential long-term late effects of the treatment you received, and ideas for improving your health.
At a minimum, the follow-up involves regular monitoring for a recurrence. This should include routine discussions of any symptoms you experience or problems resulting from the treatments you have had, a physical, and a yearly mammogram. If you are taking tamoxifen, you should also have a yearly pelvic exam.
It also means being aware of chronic treatment-related side effects, such as fatigue, sexual dysfunction, “chemo brain,” and pain syndromes, and monitoring for potential late effects of treatment, such as heart disease, lymphedema, and second non-breast cancer malignancies.
While this might sound depressing, it shouldn’t be. It means that we now have enough experience with survivorship to know what to look for and what to do about it.
Make healthy lifestyle choices.
One of the few lifestyle factors that appear to help increase survival is weight. A 2015 study found that the risk for breast cancer among obese women is 58% higher than normal-weight women. This includes women who were of a normal weight at the start of the study and gained weight during early postmenopause. In this study, the researchers said the most obese women had a body mass index (a measure of body fat) of 35 or higher. While there are no obvious reasons obese women have an increased risk, researchers postulated the increased risk may come from an increase in estrogen production that is not present in postmenopausal women of normal weight and body mass. Exercise is also important. A 2015 study found previously inactive postmenopausal women significantly benefited from 300 minutes of vigorous exercise a week as compared to the currently recommended 150 minutes. Any aerobic activity that raised the heart rate 65% to 75% of heart rate reserve was permitted, and most of the supervised and home-based activities involved the elliptical trainer, walking, bicycling, and running
Have regular follow-up exams.
You should schedule regular follow-up examinations with your surgeon and other members of your medical team. These exams will assess how you are healing, as well as find any signs of recurrence or of problems resulting from the therapy. If at any time you have a new symptom that doesn’t go away in a week or two, you should schedule an appointment to have it checked out.
Get regular mammograms.
Your surgeon will probably want you to have mammograms every six months for a year or two, and then once a year. In addition to monitoring the treated breast, the doctor will examine your other breast yearly for the possible development of a new cancer, since women with cancer in one breast have an increased risk of getting it in the other. This is particularly important if you have a BRCA1 or BRCA2 gene mutation. In this situation, MRI may be done as well. Additionally, most women who have had a bilateral mastectomy no longer need to have annual mammograms. Unless the margins were close, positive, or there seems to be a lot of tissue left, most doctors would recommend that a woman have a clinical exam by a medical provider every six months or once a year, depending on the circumstances.
Maintain insurance policies.
Be sure to maintain your health insurance policies. Obtaining health insurance with a pre-existing condition is no longer the nightmare that it once was. Under the Affordable Care Act, health insurance companies can’t refuse you coverage or charge you more because of a pre-existing condition. They also are not allowed to limit the benefits you receive for that condition and once you have the insurance, they can’t refuse to cover any treatments related to your pre-existing condition. However, this does not apply to people with grandfathered individual health policies
Treat cellulitis quickly.
Cellulitis is an infection of the skin. It occurs more commonly in places on the body that have diminished access to the immune system, such as areas of swelling or areas that have been radiated. It can start from any small infection and rapidly spread, often with a red streak up the arm or redness of the arm and/or breast. There is usually a fever as well. Although this type of infection can sometimes be treated with oral antibiotics, more often than not it requires hospitalization for intravenous drugs. Some women who are prone to recurrent attacks of cellulitis find it useful to ask the doctor for a prescription for an antibiotic to carry around with them so they can start taking it if there is the least sign of impending infection.
Attend to your relationships.
It’s important to realize that the cancer has affected your whole family, not you alone. While you’re in treatment you’re usually focused chiefly on yourself, because you have to be. But as soon as you can, address how your condition affects those closest to you. Partners of women with breast cancer also have feelings that need to be acknowledged. Couples therapy can help. It’s crucial to communicate with each other at this time and to work through the complex feelings you are facing. Being as open as you can be with your children is important for you, and for them. Breast cancer has particularly complex ramifications for a mother and her daughter. It may be worth considering family therapy with your children or the whole family.
Nurture your sexuality.
One of the least discussed subjects about life after breast cancer is sexuality, yet many women have difficulties with sex and intimacy following a breast cancer diagnosis. Most women find sex hard to talk about—especially when it concerns feelings, perhaps only half recognized themselves, about losing both their sexual attractiveness and their own libidos when they lose a part of their bodies so strongly associated with sexuality. It takes a while to feel good and in control of your body again. You need to communicate these feelings to your partner so he or she can help you in your healing and so that together you can explore new ways of lovemaking that you both enjoy.
Attend to your emotional healing.
Emotional healing techniques are more varied and individual than physical ones, but there are many that have proved helpful to women with breast cancer. Psychotherapy can be a tremendously important tool at this time, as it is in any time of great emotional stress. Persistent feelings of sadness, loss of self-esteem, and lack of interest in things that brought you pleasure before your cancer are not typical and should be followed up. Many women find it helpful to keep a journal of their emotions and experiences. Writing can help you to sort out your thoughts and feelings.
Consider a support group.
You might want to join a support group, especially if you were too overwhelmed to do it during treatment. Sometimes one-on-one brief counseling can be tremendously beneficial, particularly if you are finding it difficult to move on from the aftermath of your illness. Other women prefer keeping a journal. And still others decide to volunteer to assist other women going through breast cancer or to work with advocacy organizations working to end breast cancer.
Finally, don’t feel ashamed of what you’ve been through. Cancer still carries a stigma in our culture, and breast cancer can have especially difficult associations. Demystifying cancer is important. So is learning the many positive things that you can take from this experience. I often hear women say that while they would not wish cancer on anyone, they find themselves living more fully, they “don’t sweat the small stuff,” they cherish their families, and they truly value each day.