of a breast cancer diagnosis can bring overwhelming treatment decisions: whether choosing between mastectomy or lumpectomy, breast reconstruction options or to have additional rounds of chemotherapy based on tumor risk scores.
A diagnosis also brings inevitable stress as the person adjusts to life after hearing the words “you have cancer.” Anne Marie Mercurio, diagnosed with lobular breast cancer in 2006, and Barbara Segarra-Vazquez, a two-time breast cancer survivor, shared their stories and coping strategies during a patient advocate program Dec. 8, 2021, at the San Antonio Breast Cancer Symposium (SABCS). The symposium was held online and in person at the Henry B. Gonzalez Convention Center in San Antonio Dec. 7-10.
Mercurio and Segarra-Vazquez offered advice on acknowledging all the feelings that come with a diagnosis, adding that where a person is in life can affect the dynamics and stressors they face. For Mercurio, whose children were grown when she was diagnosed, her first concern was hiding the news until she had assembled a solid treatment plan. She didn’t want to worry her family.
Segarra-Vazquez, who lives in Puerto Rico, also delayed telling her children, who were 10 and 14 at the time, until after her lumpectomy in 2003. When she was diagnosed with breast cancer a second time in 2017, she decided not to tell her mother, who was 85. Her mother died not knowing of the second diagnosis—a decision questioned by Segarra-Vazquez’s sister and other family members.
Making choices often comes down to a person’s values as well as their personal circumstances, but Mercurio and Segarra-Vazquez offered some general advice that could help those facing a cancer diagnosis.
Embrace uncertainty. It’s easy to find yourself spiraling down a path of fear after first learning about cancer. Mercurio recalled having a cancer scare years before she was diagnosed with breast cancer when she was called back to the doctor’s office after a mammogram. At the time, her children were in elementary school, but her mother was a breast cancer survivor, so the possibility of being diagnosed was never far from Mercurio’s mind. She recalled curling up in a ball and wondering who would raise her kids. “I finally just stopped,” she said. “I thought [to myself], ‘What do you know now and what are you projecting?’” She did not have cancer on that occasion, but her response offered a valuable lesson she shared with those who tuned in virtually and in-person for SABCS. “Until you have the information, you are just adding stress to stress for things that haven’t happened,” she said.
Follow the plan. Stress might ease up some once a treatment plan is decided and you have a clear course of action, Segarra-Vasquez said. But what-ifs still occur, Mercurio noted. “When you have things to act on, you act on them,” Mercurio said. “And I think the key there is understanding, ‘What can I control and what can I not control?’ You can’t control if you need surgery. You can’t control if you are going to get chemo.”
Make informed decisions. A patient’s understanding of the disease often evolves over time through every appointment and encounter, noted Segarra-Vazquez. Trying to understand all the details about the disease can be stressful, she added, and switching to Spanish, said, “Say, ‘No entendio’” (I do not understand). It’s OK to take time to decide on next steps, Segarra-Vazquez added. This includes making sure you are the one making your own decisions about treatment. She noted that her Puerto Rican roots mean putting families at the center of decision-making, and that may require hearing many opinions on the next step to take. Ultimately, the decision is up to the patient. “We cannot listen to everybody and anybody. It’s important if you are going to make a decision to make an informed decision. And you have a right to get a second opinion, and you have the right to think about it,” she said.
Accept bad days. During treatment, there will most likely be bad days. “You need to ax the word ‘should’ from your vocabulary,” said Mercurio. “If you wake up in the morning and you don’t have the energy, you need to forgive yourself and decide this is going to be a take-it-easy day.” For Mercurio, in the days before livestreaming, that meant watching DVDs.
Let people help. “At our core, we all want to be helpful,” said Mercurio, who admits she typically is the one caring for others. She recalled returning home after her mastectomy and being unable to move her arms or climb the stairs. She called a friend, who immediately had her sons take a recliner to her house so she could rest without climbing the stairs. “If there’s nothing to eat in the refrigerator and you haven’t been able to do anything,” she said, “maybe it’s time to tell people and to be more honest [about how they can help].”
Designate a few key people. As you develop an inner circle of people you are comfortable sharing news with, you will also learn how to effectively communicate information. “That’s another stressful thing—trying to keep everyone in the loop,” Mercurio said. “Talk to one or two key people and let them be responsible [for sharing your news], which gives you the opportunity to stay strong physically.”
Breathe. “There’s the simple act of focusing on, ‘in for four, hold it and count to four, and let it out for four’ that for me is the greatest tool because it requires nothing,” said Mercurio of a breathing technique she uses. In those seconds, centering on her breath helps her keep her mind from spinning, which can help her process information.
Write it down. Segarra-Vazquez suggested journaling as a tool to allow you to express your feelings in a safe way and to provide a record of your treatment and side effects. “When you go back to your doctor and they ask you how many days you’ve felt nausea, you can go in your journal and take it back to them,” she said. You can also record important questions to ask at appointments. Segarra-Vazquez also wrote down when people stopped by or did nice things for her throughout her treatment. She documented how a friend brought fresh fruit each week, and how another friend picked up her kids and took them to a movie when she had chemotherapy. “I wrote all those things and when I go back, I get tears into my eyes knowing that people really appreciated me and wanted to help,” Segarra-Vasquez said.
Reach out. Support groups and assistance come in many forms, but there is no one-size-fits-all approach to maintaining mental health. “As we move into this virtual world, we can connect with anyone,” said Mercurio, who notes that in-person groups and Facebook groups can work for many people. Acknowledging that everyone’s coping methods are different, she emphasized the strength that comes from being honest with your loved ones and care team. “Nobody is a mind reader. If everyone comes away with one thing that they should remember, it’s to open our mouths and speak our truth, [to say] ‘I’m not OK’ or ‘I need help with that,’” Mercurio said. “For me, that is a powerful way to acknowledge that I don’t need to be Superwoman.”
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January 05, 2022