For every patient, the breast cancer journey starts in a different place. It might be the lump you found yourself; the mammogram you were sure was just routine or the diagnosis of a loved one that made you wonder: What about me?
But no matter where you start, no one is prepared to actually hear those four life-changing words: “You have breast cancer.”
“One of the most common reactions we hear is the shock and disbelief at the diagnosis,” says Susan Brown, R.N., managing director of health and program education at the Susan G. Komen Breast Cancer Foundation. “I’ve heard so many people say, ‘I didn’t hear anything after I heard the words, ‘breast cancer.’ They can’t hear the words that come after. They feel numb. They often have to hear it again, and they often have to bring someone back with them to hear it.”
Once the shock finally registers, another unexpected emotion often surfaces, says Brown: Guilt.
“I’ve heard many women say, 'Now I feel guilty because there’s a history of breast cancer in the family and it’s because of me. Now my sisters have to worry, my daughters,’” says Brown. “Of course that whole notion is absurd. The inherited genetic component accounts for a small proportion of women. But most people don’t realize that the vast majority of cases are due to some type of spontaneous or sporadic breast cancer that’s unexplained by genetics and is likely caused by a combination of factors.”
Breast cancer is a tour through unchartered territory. You’re entering a foreign country where you don’t speak the language, don't know the local customs and yet need to figure out how to survive. Like many other things, getting advice from someone who came before you can help. iVillage talked to breast cancer survivors who share what they wish they knew at the start of their journey.
Get a wig before your hair falls out
Breast cancer treatment doesn’t just impact how you feel. It affects how you look. For Eloise Caggiano, the thought of going bald from the chemotherapy was nerve-wracking. “I didn’t want to make other people feel uncomfortable,” says Caggiano, who is the program director for the Avon Walk for Breast Cancer and an eight-year cancer survivor.
Fortunately for Caggiano, early in her diagnosis another breast cancer survivor gave her an important piece of advice: “If you plan to wear a wig, get it well in advance of your hair falling out,” she said. It can take time to find the right wig and having the right one ready will alleviate your stress about being seen bald. “I had my wig ready to go and never had to worry about going out in public once my hair fell out,” she says.
Treatment really takes a toll on your body
When LaWanda Fountain was diagnosed, she leaned on her aunt, who had battled breast cancer six years earlier. Her aunt warned her about all the tests she’d need to go through, about the rigors of chemotherapy, but hearing her aunt’s story was not enough to prepare Fountain for what she had to endure. That information came not from someone who lived it, but from someone who was an expert on it.
“I wish I knew the toll all the MRIs, all the blood tests, all the chemo, that damn chemo, and all the radiation would take on me compared to my aunt,” says Fountain, who was 36 when diagnosed four years ago. “I wish I knew how bonkers my hormones would become. The journey led me to a chemo nurse who explained the ins and outs of chemotherapy and radiation to me.”
The nurse prepared Fountain for the long-term effects of chemotherapy on the body and helped her understand how it worked in the first place. “To this day, I am thankful for her,” says Fountain. “If it wasn’t for her, as much as treatment sucked, I would have had a much more difficult time getting through it.”
Worry about your own feelings first
At age 26, Gerie Voss should have been focused on nothing other than planning her upcoming wedding. Instead, she found herself fighting cancer. While the diagnosis was difficult for her to comprehend, what was equally jarring was the reaction from her father.
“When I told my father, he at first was in complete denial,” Voss, now 39, says. “He acted distant and unconcerned. I was disappointed by his reaction. I wish I had known that I would need to lean on others to save myself from that disappointment.”
Her father was detached when she needed his support and then later, when she asked to be alone at the hospital the day of her mastectomy, he ignored her wishes. “I was embarrassed by how I looked and I felt the need to console him rather than focus on my own recuperation,” Voss says. “If I had known he was not going to honor my wishes for the day, I would have been more forceful in explaining my needs or could have at least prepared myself for his visit.”
Voss doesn’t fault her father for the way he reacted to such devastating news. What she does wish is that before her diagnosis, “I understood how people who love me would respond to the news,” she says. “It would have helped me be better equipped to handle their reactions while managing my own feelings about my diagnosis.”
You can be mad and cry as much as you want to
As identical twins, Kelly McCarthy and Kristen Maurer had shared many things in their lifetime—including breast cancer. Four months after Kelly was told she had cancer Kristen found herself hearing the same words.
“Kelly and I both agree that the best advice we can give is that it is okay to be mad and it is acceptable to cry,” says Kristen. “Women who are diagnosed feel obligated to be strong and positive, and as a result, people place unrealistic expectations on how they 'should' be.”
So if you need to cry, cry. Find a friend who will just let you sob without telling you everything will be alright and without looking for the silver living. Just ask to be held in silence so you can shed the load you are carrying on your shoulders.
“We learned that in order to heal and move on, we needed to deal with our negative emotions in a healthy way,” says Kristen. “When Kel has a bad moment I usually say, 'It’s okay for you to be angry or sad or depressed today, but tomorrow you’d better get over it.’ We’ve found this works for us. As a result, we are both doing much better and can even laugh at our situation.”
You might feel empowered
Ivona Hertz of Brooklyn was 42 when she heard those fateful words: “You have breast cancer.” Her first reaction was fear. “Fear of losing my life, imagining losing my hair and confronting people who felt sorry for me,” says Hertz, now 46. But as soon as she had her medical team in place and a treatment plan, she felt unexpectedly empowered. “I focused on getting through surgery and radiation,” she says. “Nothing else mattered.”
Each day became a victory and an opportunity to pause and reflect at small blessings. “The mornings could be hard, when the skin was peeling from my breast and I had to endure those robotic (radiation) treatments,” Hertz says. “But an hour later I left and had the entire day ahead of me. I chose to do the things I loved and spend time with the people I love. I stopped being angry at people who hurt me and surrounded myself with people who love me. The journey helped me become my better self.”
A version of this story originally appeared on iVillage.