By Heather Stringer
Originally posted on www.cancerfightersthrive.com
Patients diagnosed with cancer can struggle with how and when to share the news with others, but these conversations can have invaluable benefits.
When Trisha Polite, 43, was diagnosed with stage III breast cancer in late September 2013, she shared the news with a small circle, including her husband, mother, sister, two in-laws, two friends and her pastor. She was not ready to divulge her new reality to anyone else—even her three children, then ages five, seven and 10. To avoid raising suspicion after she began treatment, she continued with habits such as wearing curlers at night—even after she started wearing a wig.
After her first round of chemotherapy, however, Trisha became severely dehydrated and passed out at home, which prompted her husband to call paramedics. When she returned home three days later, Trisha knew it was time to share the news with her children. She gathered them in the dining room of their Douglasville, Georgia, home and explained that they had probably noticed that she had not been feeling well.
“I said that I was sick and would need to have medicine for about six to seven months and that the biggest side effect they would see is my hair falling out,” says Trisha, a patient at Cancer Treatment Centers of America® (CTCA) in Newnan, Georgia.
“I also told them that I had decided to cut my hair short as a way to feel in control,” Trisha says, explaining that by framing the news with this positive, proactive energy, she hoped to inspire a similar response in her kids.
Trisha was relieved when her two daughters did in fact respond positively, both exclaiming that they loved her haircut and wig, which they later named Violet. Her son, the youngest of her children, was more hesitant at first, but he finally welcomed the change when he realized that his mom’s short haircut was similar to his own.
Although she had disclosed her illness to her children and eight other people, Trisha would not be ready to reveal her situation beyond this inner circle until several months later, after she had overcome her own fears related to having cancer.
Make a Plan and Pave the Way
Trisha’s decision not to reveal her diagnosis beyond her inner circle reflects the reality that news of a cancer diagnosis can evoke strong emotions. Reactions among recipients of the news can range from intense anxiety to sadness to anger—or all of the above. For this reason Carla Denham, MD, a psychiatrist at CTCA® in Goodyear, Arizona, encourages patients to take time to prepare for the initial conversation with loved ones. “The first consideration would be for the patient to decide how private this topic is going to be,” says Dr. Denham. “People should not feel obligated to tell anybody, and it is perfectly fine to take time to digest the news first.”
Waiting also gives patients time to consider the type of response they would like to receive, Dr. Denham says; recognizing their expectations for this response can help shape their delivery, as recipients of the news typically follow the lead of the person sharing the diagnosis. For example, patients who are open to talking in more detail and answering questions may prefer sharing information about the stage of the cancer, the treatment plan and tests. For those who would rather keep the conversation brief, it may be wiser to explain that they have been diagnosed with cancer and are undergoing treatment but are not comfortable talking about it.
“I’m a big believer in the idea that people should ask for what they want from others,” Dr. Denham says. “When patients do not convey what they want, they can become frustrated when others fail to offer the kind of support they need.”
The Benefits of Telling Your Story
For Trisha one of the most significant obstacles she faced when sharing more openly was an aversion to being treated like a sick person. The turning point came when she forgot to wear her wig one day when she walked into a furniture store with her family. When she realized her mistake, initially she panicked, but a few minutes later the store owner told her the story of his wife—who had been living with stage IV breast cancer for 13 years.
“That was the last day I put my wig on,” Trisha says. “That day I finally conquered fear and snatched my confidence back. I had been disconnected from myself and in denial that this was my story, but I started to understand how it would change my life and what I could gain from it, and that gave me the confidence to share with others.”
While some people diagnosed with cancer may need more time than others to spread the news beyond their inner circle, once a patient is ready to talk about the situation with a larger group of extended family and friends there may be a temptation to protect certain individuals from the news. Psychologist Teresa Deshields, PhD, a board member of the American Psychosocial Oncology Society, cautions against this.
“Although the intentions may be noble, it is stressful to remember who knows and doesn’t know,” Dr. Deshields says. “And when you protect people from the truth, it does not allow them to support you. I’ve talked to young adults who accidentally heard about a parent’s diagnosis from someone else, and they are usually deeply hurt by this. It raises a lot of questions.”
Maria Feldkamp, 44, considered delaying the conversation with her 19-year-old son, Joshua, who had recently joined the Army. She had been diagnosed with stage IV breast cancer in early December 2012. “I was afraid it would put a stop to what he was doing,” says Maria, of Gosport, Indiana. “I wanted him to stay focused, and I did not know what to do.”
She had already shared the news with her husband as well as her four daughters and her eldest son, then ages 10, 14, 15, 18 and 20, and they encouraged her to call Joshua. When Maria talked to him on January 10, he was quiet for several seconds after hearing about the situation, and then he started asking questions. He was eager to fly home to support his mother, but Maria urged him to finish his training. At the end of the conversation, he was appreciative that she had been honest with him.
In fact, sharing the news with her family helped Maria find the courage to seek out a second opinion. The cancer had spread to her hip and collar bone, and her oncologist at the time recommended that she forgo chemotherapy because the cancer had already spread to her bones. He explained that she would have to live with the disease and that the best option was a hormone blocker to manage further spread.
“I felt like I was letting my family down with such a terrible diagnosis because I am the strong one,” Maria says, “but they were supportive and wanted to help me get healthy again. By telling them, I understood that it was not my fault, and getting better became my new focus.”
Maria called CTCA in Zion, Illinois, and on January 25, 2013, and she and her husband, Clint, drove five hours to CTCA. Within a few days, Maria’s care team had downgraded her diagnosis to stage III breast cancer. They told her that the cancer was highly treatable with aggressive chemotherapy.
For the following six months, Maria returned to CTCA every three weeks for chemotherapy, and during her visits she started sharing updates with loved ones via Facebook. Calling friends and relatives about new developments can be time-consuming and exhausting, says Dr. Deshields, and online tools like Facebook and CaringBridge simplify the dissemination of information.
Although communicating through the Internet has advantages, Dr. Denham warns patients to avoid the temptation to become consumed with online updates at the expense of face-to-face relationships. “We have to use the Internet as a tool, but not a replacement for intimate relationships,” she says. “There is a lot to learn from having an illness, and we can lose that focus if we get caught up in websites geared toward cancer support. By talking to other people in person, patients often share what they have realized about what is important in life, and it can be inspiring when you allow yourself to be cared for by people in person.”
This was certainly the case for Maria. “I have always had a hard time being able to receive help, and the cancer diagnosis helped me learn to accept help from other people,” she says. “I could not get over the number of people who were there for me and my family. It was emotionally comforting because I felt like I had so many people rooting for me.”
A Personal Decision
When and how to share news of a diagnosis is a personal decision, and each patient and family will ultimately consider their situation and break the news in the way that is most appropriate for them. For Maria and Trisha, who were both devastated when they first learned that they had cancer, in the end the decision to share the news with friends, family and other members of their communities proved to be a vital source of support and encouragement during their respective cancer journeys. And as a result, both women have now become a source of hope and support for other cancer survivors and family members.