Florida real estate agent Sondra Burwick learned in 1996 that she had ductal cancer in situ (DCIS) in her right breast. DCIS, also called stage 0 cancer, begins and usually remains in the milk ducts. Nowadays doctors call it precancer and don’t always treat it. But Burwick’s surgeon said she needed a double mastectomy: an operation to remove both breasts, including the healthy ones.
Burwick knew there had to be more options. She talked to other doctors. She read everything she could know about breast cancer. In the end, she opted for 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 is not a medical emergency,” she says. “You have time to breathe, think, and talk to other people before deciding what to do.”
Here are some other important facts about breast cancer that your doctor may not tell you about:
Lymphedema
This is a painful swelling that may occur after surgery or radiation treatment of your lymph nodes. Because the lymphatic fluid doesn’t drain as well as it should, it will build up in your hand, arm, or chest. There is no cure, but if you start treatment right away, symptoms are a lot easier to manage. Deanna Attai, MD, a breast cancer surgeon and assistant professor at the University of California at Los Angeles, says it pays to be proactive. If your doctor doesn’t suggest this, ask a lymphedema therapist before surgery.
Neutropenia
This happens when you have very few neutrophils, a type of white blood cell. Neutropenia makes it difficult for your body to fight infections and is one of the most serious side effects of chemotherapy. Jeffrey Crawford, MD, a medical oncologist and professor at the Duke Cancer Institute, says talking to your doctor about low white blood cell counts and the best way to prevent infection is even more important during the coronavirus pandemic.
fertility
Fertility isn’t discussed often enough in any cancer treatment, not just breast cancer, says Attai. Doctors shouldn’t assume that a woman in her forties or without a partner, for example, has no interest in children. They should talk to you about the effects of breast cancer treatments like chemotherapy and hormone therapy. “Endocrine after 5 years [hormone] In therapy, it can be more difficult to get pregnant, ”emphasizes Attai. Discuss your options for having children after treatment, including freezing eggs or embryos.
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Hormone side effects
People often worry about side effects of chemotherapy, but hormone therapy (also called endocrine therapy) can be just as serious. And patients don’t hear enough about it, says Attai.
“It can be a very tough 5 years. Some women are unhappy and feel insufficiently informed and supported by their doctors. “
She emphasizes that while many women have few problems, others “really struggle”. An often ignored symptom for drugs like tamoxifen is brain fog. “It’s expected with chemotherapy, but not endocrine treatment,” Attai says.
If your doctor ignores your problems with side effects, be sure to see someone. “If your survival concerns are not addressed, it’s time to get a second opinion,” she says.
Recurring cancer
Even with the best treatment, breast cancer can come back (or come back). It can be in the same place or in different parts of your body. Attai says doctors don’t talk about it enough either. “Women are told that they will be cancer free if they have used tamoxifen for 5 years. However, we do know that there is a risk that it may come back elsewhere or metastasize 15 or 20 years later. Even if you’ve had a low-grade, slow-growing tumor, it doesn’t mean cancer cells aren’t drifting around. This should be discussed at every visit. ”
prevention
Attai also says that some doctors don’t want to talk about cancer prevention because it can cause a lot of guilt. “Women ask themselves, ‘Was that a glass of wine? Was it child’s play on my birthday? ‘But with one person we may never find out. Women are great with guilt and beat up. The last thing you need is to feel like you caused it. “
Instead, she tells the patient, “You are getting a full passport right now, but these are the things we will work on in the survival 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 the risk of recurrence and to make sure you are leading a healthy life. “
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Finances
Treatment for breast cancer can be toxic. It can also be difficult to pay for. And many insurance issues are in your court. Many people don’t want to ask for help, says Attai. Doctors should talk about financial health and not assume that everyone will have the resources to pay for treatment. “We need to better inform them about resources and empower them to express themselves.”
If you can, ask a friend or family member to be your insurance and financial contact. When this is not possible, most hospitals offer social workers and financial advisors.
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SWELL:
Sondra Burwick, Real Estate Agent, Fort Myers, FL.
MDAnderson.org: “Is Surgery the Right Choice for Women with DCIS?”
Deanna Attai, MD, breast cancer surgeon and assistant professor of surgery at the University of California, Los Angeles.
Memorial Sloan Kettering Cancer Center: “Post-Breast Lymphedema Treatment.”
Jeffrey Crawford, MD, medical oncologist and professor of immunology, Duke Cancer Institute.
BMJ Open: “The COMET Study (Comparison of Operative Versus Surveillance and Endocrine Therapy): A Randomized, Controlled, Phase III Clinical Study for Low Risk In Situ Ductal Cancer (DCIS).”
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