Florida real estate agent Sondra Burwick learned in 1996 that she had ductal carcinoma in situ (DCIS) in her right breast. DCIS, also called stage 0 cancer, starts and usually stays in the milk ducts. These days, doctors call it pre-cancer and don’t always treat it. But Burwick’s surgeon said she needed a double mastectomy: surgery to remove both breasts, including the healthy one.
Burwick knew there had to be more options. She talked to other doctors. She read everything she could about breast cancer. In the end, she settled on lumpectomy and radiation, still common treatments for DCIS.
Burwick’s advice? Don’t be afraid to get a second opinion, even if your doctor doesn’t mention or recommend it. “Breast cancer isn’t a medical emergency,” she says. “You have time to breathe, think, and talk to other people before you decide what to do.”
Here are some other key facts about breast cancer your doctor might not tell you about:
Lymphedema
This is painful swelling that can happen after surgery or radiation to your lymph nodes. Because lymph fluid doesn’t drain as well as it should, it builds up in your hand, arm, or chest. There’s no cure, but if you start treatment right away, symptoms are much easier to manage. Deanna Attai, MD, a breast cancer surgeon and assistant professor at the University of California, Los Angeles, says it pays to be proactive. If your doctor doesn’t suggest it, ask to see a lymphedema therapist before surgery.
Neutropenia
This happens when you have very low levels of neutrophils, a type of white blood cell. Neutropenia makes it harder for your body to fight infections and is one of the most serious side effects of chemo. Jeffrey Crawford, MD, a medical oncologist and professor at Duke Cancer Institute, says that during the coronavirus pandemic, it’s even more important to talk with your doctor about low white cell counts and the best way to prevent infections.
Fertility
Fertility isn’t discussed often enough with any kind of cancer care, not just breast cancer, Attai says. Doctors shouldn’t assume that a woman who’s in her 40s or who doesn’t have a partner, for example, isn’t interested in having children. They should talk with you about the effects of breast cancer treatments like chemotherapy and hormone therapy. “After 5 years of endocrine [hormone] therapy, it may be harder to get pregnant,” Attai points out. Discuss your options for having children after treatment, including freezing eggs or embryos.
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Hormone Side Effects
People often worry about chemo side effects, but hormone therapy (also called endocrine therapy) can be just as severe. And patients don’t hear enough about that, Attai says.
“It can be a really rough 5 years. Some women are miserable and don’t feel they have adequate information and support from their doctors.”
She stresses that while lots of women have few problems, others “really struggle.” One often-ignored symptom of drugs like tamoxifen is brain fog. “It’s expected with chemotherapy but not with endocrine treatment,” Attai says.
If your doctor doesn’t pay attention to your problems with side effects, think about seeing someone else. “If your survivorship concerns aren’t being addressed, then it’s time to get a second opinion,” she says.
Recurrent Cancer
Even with the best treatment, breast cancer can come back (or recur). It may be in the same place or in other parts of your body. Attai says doctors don’t talk about this nearly enough, either. “Women are told they’ll be cancer-free if they take tamoxifen for 5 years. But we know there’s a risk of it coming back or metastasizing elsewhere 15 or 20 years later. Even if you had a low-grade, slow-growing tumor, that doesn’t mean cancer cells aren’t drifting around. This should be talked about at every visit.”
Prevention
Attai also says some doctors don’t want to talk about cancer prevention because it can cause a lot of guilt. “Women wonder, ‘Was it that one glass of wine? Was it that piece of cake on my birthday?’ But in any one person, we may never know. Women are great with guilt and beating themselves up. The last thing they need is to feel they caused it.”
Instead, she tells patients, “You get a total pass for right now, but these are things we’ll work on in the survivorship phase. [Healthy lifestyle choices] can reduce your risk of heart disease, which kills more women than breast cancer. We want to be more proactive to reduce your risk of recurrence and make sure you have a healthy life.”
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Finances
Breast cancer treatment can be toxic. Paying for it can be difficult, too. And a lot of insurance issues are in your court. Many people don’t want to ask for help, Attai says. Doctors should talk about financial health and not assume that everyone has the resources to pay for treatment. “We need to do a better job of letting them know about resources and empowering them to speak up.”
If you can, ask a friend or family member to be your point person for insurance and financial issues. If that’s not possible, most hospitals have social workers and financial counselors to offer assistance.