Hearing the words “you have breast cancer” can be an overwhelming and terrifying experience. In that life-altering moment, it can be difficult to think clearly. But the more information you can gather in the days…
Hearing the words “you have breast cancer” can be an overwhelming and terrifying experience. In that life-altering moment, it can be difficult to think clearly. But the more information you can gather in the days and weeks immediately following your diagnosis, the better equipped you’ll be to deal with all the decisions you’ll have to make.
“That first consultation [after a breast cancer diagnosis] is very long and a lot of information is presented, which is why I encourage patients to bring a family member with them,” says Dr. J. Jaime Alberty, a breast surgical oncologist at the Dubin Breast Center at Mount Sinai Hospital and assistant professor of surgery at the Icahn School of Medicine at Mount Sinai in New York. “You give them so much information, they sometimes don’t remember other things they wanted to ask,” and having a loved one there to support you, act as a second set of ears and advocate for you can be very helpful.
In addition to bringing a friend or loved one with you, you should also brainstorm ahead of time and bring a list of questions you’d like to ask your doctor about your situation. Dr. John P. Williams, a breast surgeon and medical director of the Novant Health UVA Breast Center in Haymarket, Virginia, says asking the right questions starts a necessary “conversation with your treating physicians, which leads to shared decision-making where you’re part of the team.”
Modern medicine has moved away from the model where the doctor simply tells patients what to do. Today, patient preference is an important part of the equation. The best way to make sure you’re able to participate in shared decision-making is to educate yourself on your options and the nuances of your specific case. Remember, not all breast cancers are created equal, and determining the best treatment approach will depend largely on the characteristics of your specific case.
Williams says patients who have more information are more empowered and often are more satisfied with the outcome of their treatment. To help patients gain an understanding of their diagnosis and what questions they should ask their physicians, Williams has created a free, video-based Breast Cancer School for Patients that explains the basics of breast cancer for patients. His site also provides lists of questions that patients can print and bring to the doctor’s office with them so that no aspect of care is overlooked. Williams notes that doctors are human, too, and asking lots of questions can help remind them of things that might not have been considered or that hadn’t come to the forefront yet, ensuring that all your bases are covered.
The questions you ask your physician can address anything that seems relevant or important to you, but the six questions below are overarching areas of inquiry that most patients ask about and ones that most doctors want you to know about.
1. Can you tell me about my specific cancer?
Breast cancer is not a single disease — there are a few different types and lots of variations, and it can also be diagnosed at different stages. Determining exactly which kind of cancer you have is critical to selecting the best treatment approach. Do you have hormone-receptor positive breast cancer — the most common type, which tends to grow more slowly? Or do you have a more aggressive HER2-positive or triple negative breast cancer? Is the cancer confined to a small area of the breast, or has it spread to nearby lymph nodes or distant parts of the body? How big is the tumor and what other features may dictate a specific treatment protocol, such as a lumpectomy versus a mastectomy?
2. What are my treatment options?
Breast cancer care has evolved to a point where most patients now have some options. Patient preference is a factor in many cancer care decisions, and your doctor should be considering your wishes when developing a treatment protocol. Having the right to express a preference and having options can be empowering, but it can also be confusing for some patients, particularly if you have no background in cancer care or little experience with medicine in general. In any case, you should be sure to find out all treatment options that are available to you. Do you need a mastectomy, or will a lumpectomy work just as well? Which type of chemotherapy do you need, and is that your only option, or can you have a different drug that may have less severe side effects? Will you need radiation, and in which order will these various components be delivered?
3. Do I really need chemotherapy?
The recent TAILORx trial showed that many women with early stage breast cancer who meet certain criteria can safely skip chemotherapy without reducing their survival rates. This is not an option open to all women, so Williams says it’s important to ask whether you qualify for Oncotype DX testing, a form of genomic testing that analyzes a sample of the tumor and assigns a score indicating how likely the cancer is to recur. The TAILORx trial found that patients with a score of 25 or less (out of 100) can skip chemotherapy.
4. Can I get a copy of my pathology report?
When your tumor is biopsied, the pathologist will create a report that includes all the information gathered about your cancer. It’s important for you to receive a copy of this document. Ask your doctor to explain the findings or provide clarification if anything is unclear. You should also bring this report with you to any other doctors you visit. If you’re seeking a second opinion, this information will be critical to that doctor’s assessment.
“The thing that I recommend the most to patients is to seek out second opinions,” Alberty says. “One of the good things about breast cancer is that we have so many options in terms of treatment — the kind of surgery, whether or how we’ll perform reconstruction and different types of radiation and chemotherapy. It’s important to know that there’s options and to get other opinions from other specialists about what they would do,” he says. The more information you can provide to any physicians offering second opinions, the better they’ll be able to assess your case.
5. What should I expect from treatment and how will cancer change my life?
Every type of treatment for cancer brings side effects. Even if you’re able to safely skip chemotherapy, interventions such as radiation and surgery will change some aspects of your life, from body image to chronic pain and fatigue. Ask your doctor what you can expect. Will you lose your hair? What are your chances of developing peripheral neuropathy, a chronic, painful and potentially debilitating condition that causes patients to lose function and sensation in the hands and feet? How likely are you to develop cognitive issues related to chemotherapy or hormone therapies? All of these potential side effects and many more can have a big impact on your quality of life. Your assessment of how willing you are to deal with certain side effects may help guide decision-making around whether a certain treatment is right for you.
6. Which other doctors or health care professionals should I see, and do you participate in an accredited breast center?
Williams says working with an oncologist or surgeon who’s based at an accredited breast center is important, because doctors based at such multidisciplinary centers, “are talking and texting with each other and working together. That can make you feel like they’ve wrapped their arm around you and are walking you through this process together. That’s the definition of quality care — a multidisciplinary approach where everybody can learn from each other,” he says. If your doctor doesn’t participate in an accredited breast center, “that’s a red flag that they don’t embrace exchange of ideas.” The American College of Surgeons accredits breast centers “that are committed to providing the best possible care to patients with diseases of the breast,” through its National Accreditation Program for Breast Centers. Look for the intials NAPBC.
Alberty agrees that consulting the right specialists and getting other opinions may help you develop an appropriate treatment plan. “It’s not cut and dry. There’s some gray areas and usually in a breast cancer center like the one where I work, we discuss cases in a multidisciplinary fashion.” This means the oncologists, surgeons, pathologists, geneticists and other care team members decide what the best course of action is together with the patient.
In addition, you may qualify to visit with a genetic counselor to determine whether you have a mutation on the BRCA1 or BRCA2 gene. These mutations can put some people at much higher risk of developing cancer — a 2017 JAMA study estimated that 72 percent of women who inherit a harmful BRCA1 mutation and 69 percent with a harmful BRCA2 mutation will develop breast cancer by age 80. If you’re found to have one of these mutations, that may alter your plan of attack — some women opt for a prophylactic double mastectomy to reduce risk, while others opt to treat only the cancer that has been diagnosed and undergo more frequent screening for future cancers. Either approach can be the right answer for you.The key is to find out if you’re a candidate for genetic testing. A genetic counselor can help you figure out whether genetics play a role in your cancer and which approach works best for your situation.
Many patients also seek help from physical therapists during treatment, particularly after surgery to restore full range of motion to the arm and reduce the risk of developing lymphedema (swelling of the arm and hand on the side where lymph nodes have been removed) and cording (a condition called axillary web syndrome that creates “cords” of knotty, fibrous tissue in the arm and sometimes the hand on the same side where surgery was performed. It can be painful and restrict range of motion and is poorly understood but related to the removal of lymph nodes). It’s never too soon to start looking for the right provider, so ask your doctor for recommendations and suggestions.
You may also want to seek help from a mental health care provider, a support group, a dietitian and other health care providers who can support other aspects of your treatment. Williams says it takes a village to see patients through the difficulty of a breast cancer diagnosis and treatment. “If you’re diagnosed with breast cancer, it’s so important to create a team of breast specialists to help you learn about your breast cancer and to make the best treatment decisions. Inevitably, the treatment journey will last 3 to 12 months or more. It’s a marathon, and you can’t do it alone,” but he says when you’re educated about what you’re dealing with, that puts you “in the driver’s seat.” Making informed decisions with your physicians “leads to the best outcomes.”