Many experts in breast cancer recovery encourage patients and their doctors to start planning for life after treatment even before treatment begins.1 There are steps you can take now to prevent, minimize, or at least prepare for the potential long-term effects of breast cancer treatments. This is what we mean by “planning for survivorship.”
According to the National Coalition for Cancer Survivorship, “survivorship” starts at the moment of cancer diagnosis and continues throughout the rest of your life.2 But when we talk about survivorship, we’re usually referring to the time after initial treatments — such as surgery, radiation therapy, and chemotherapy — end. You might still be on a long-term treatment such as hormonal therapy, but your “main” treatments to remove the cancer will likely be finished.
Depending on what treatments you need, you could experience one or more longer-term physical side effects. These can start during treatment, just after, or even months or years later.1 They’re different from immediate side effects, such as nausea during chemotherapy or skin irritation during radiation, which typically get better after treatment stops.
(If you have metastatic breast cancer, you’ll be in treatment for the rest of your life. Some of the below information about planning for long-term side effects may be useful to you. However, you also may wish to visit our pages on Metastatic Breast Cancer.)
Some long-term effects breast cancer survivors may experience:
- fatigue and weakness
- upper-extremity dysfunction: tightness or limited range of motion in the upper body
- lymphedema: swelling of tissues in the arm, hand, or upper body as a result of lymph node removal
- joint pain
- neuropathy: pain, numbness, and/or tingling in the fingers and toes
- menopause/infertility as a result of chemotherapy
- weight gain
- cardiovascular effects: impact on the heart and blood vessels
- osteoporosis: weakening of the bones1
- sexual issues, such as loss of sex drive and vaginal changes that make intercourse painful or difficult
- changes in memory or thinking (sometimes called “chemobrain,” although people who don’t have chemotherapy also report this symptom)
Often, these effects aren’t discussed, they get worse, and breast cancer survivors assume this is their new normal.3 More experts are suggesting that patients and their doctors:
- Review potential longer-term side effects before treatments begin: Discuss your life goals for after treatment with your team. For example, if you’re a surgeon, violinist, seamstress, or in some other profession where avoiding neuropathy is a priority, your doctor might be able to bypass chemotherapies with this side effect. If you want to have children in the future, there may be ways to preserve your fertility. Talk about your professional and personal goals so you can plan treatment accordingly.
- Discuss ways to prevent side effects as well as how to identify and treat them if they happen: For example, moderate exercise — such as power walking for 30 minutes a day — has been shown to help prevent long-term fatigue. Diet and weight-bearing exercises can help with osteoporosis. Talk about what you can do during and after treatment to recognize and deal with side effects. Your doctor also can refer you to other specialists who can help. Examples might include a cardiologist, fertility specialist, or psychiatrist.
- Connect with a therapist who specializes in breast cancer rehabilitation. This person evaluates patients before treatment and keep tabs on them throughout treatment and afterwards. This is sometimes called “prehabilitation.”1 This approach isn’t yet the standard of care everywhere. Also, therapist visits may or may not be covered by health insurance.
Whatever you can do to plan for survivorship can be helpful. Instead of reacting when a side effect appears, you’ll already have a plan in place for dealing with it. And that could improve your life over the long-term.1
Working with a rehabilitation therapist
Before surgery or soon after, ask to meet with a rehabilitation therapist who works with breast cancer survivors. This person usually is a certified rehabilitation therapist or exercise physiologist with training in cancer-related issues1, although it could be a physician, nurse, or other medical professional. Ask your doctor or nurse for recommendations. Many hospitals and medical centers now have cancer rehabilitation programs or survivorship clinics with these specialists on staff.
The goals of this pre-surgical visit are to1:
Check on your upper body/arm right now, as well as your overall physical health and stamina. The therapist can establish a baseline of what’s normal for you, which can help in detecting any future side effects. He or she can look at:
- your current strength and range of motion in your shoulder, arm, and upper body on the same side where you’ll be having surgery (or both sides)
- the circumference (distance around) your arms and hands — having these measurements taken at various points along your hands and arms can be helpful in detecting lymphedema, an often-gradual side effect that starts with mild swelling that is hard to see on your own; learn more about Reducing Lymphedema Risk: Before Surgery
- your level of physical activity/exercise/overall energy
- your weight and body mass index (BMI)
- any current medical conditions that are causing pain or fatigue
Make a plan for after surgery. Your therapist can:
- Teach you range-of-motion and stretching exercises to do after surgery and advise you when it’s safe to begin them. Evidence suggests that gentle exercise can begin 1–2 weeks after surgery.1 See what your therapist recommends.
- Provide instructions about how to safely return to normal activities after surgery.
- Help you put a post-surgery exercise plan in place. There is general agreement that exercise can benefit all breast cancer survivors.3 For more information about how to exercise safely, see our pages on Exercise as well as Lymphedema and Exercise.
- Advise you about weight loss (if needed) and managing your weight moving forward, since weight gain is a common experience for breast cancer survivors — most likely a result of chemotherapy, hormonal therapy, or both, as well as decreased physical activity and changes in eating habits.5
- Help you learn to care for your arm (or arms) to reduce the risk of lymphedema, especially if you had underarm lymph nodes removed. You’ll learn how to protect your skin, avoid overdoing it with your arm(s), and maintain a healthy weight — all of which can reduce risk. For more information, see Reducing Risk of Lymphedema and Lymphedema Flare-Ups.
- Give you information about healthy eating and nutrition or refer you to a nutritionist or dietitian who advises people with cancer.
- Set a schedule for return visits so you can be monitored for side effects. A first return visit within 30 days of surgery is generally recommended.1
- Review your entire treatment plan once it’s available, discussing possible side effects, what to watch out for, and what you can do about the side effects. You can do this now and at future visits.
If you’ve already had surgery and didn’t do this planning, don’t worry: It’s not too late. Your treatment team and your insurance plan can help you figure out whether these visits are covered. If you don’t have access to a rehabilitation therapist, ask if someone on your treatment team can help you plan ahead for survivorship.
The medical experts for Before Treatment: Planning Ahead for Survivorship are:
Brian Wojciechowski, M.D., medical oncologist, Riddle, Taylor, and Crozer Hospitals, Delaware County, PA
Dori Klemanski, DNP, CNP, clinical director of survivorship, Ohio State University Comprehensive Cancer Center, James Cancer Hospital and Solove Research Institute
Lillie Shockney, R.N., B.S., MAS, administrative director of the Johns Hopkins Avon Foundation Breast Center
Stout NL et al. A prospective surveillance model for rehabilitation for women with breast cancer. Cancer. 2012;118(8 Suppl): 2191-2200.
Available at: https://onlinelibrary.wiley.com/doi/full/10.1002/cncr.27476.
National Coalition for Cancer Survivorship website. Mission statement.
Available at: http://www.canceradvocacy.org/about-us/our-mission/.
- Binkley JM et al. Patient perspectives on breast cancer treatment side effects and the prospective surveillance model for physical rehabilitation for women with breast cancer. Cancer. 2012;118(8 Suppl):2207-2216.
Available at: https://onlinelibrary.wiley.com/doi/full/10.1002/cncr.27469.
- Silver J. Cancer prehabilitation: important lessons from a best practices model [article online]. J Hematol Oncol Pharm.
Available at: http://jhoponline.com/ton-issue-archive/2015-issues/march-vol-8-no-2/16357-cancer-prehabilitation-important-lessons-from-a-best-practices-model.
- Demark-Wahnefried W et al. Weight management and its role in breast cancer rehabilitation. Cancer. 2012;118(8 Suppl):2277-2287.
Available at: https://onlinelibrary.wiley.com/doi/full/10.1002/cncr.27466.