20 Sep 2016 ‘Too young’ for breast cancer

by Sonja J. Keith

Jeannie Brown’s doctor told her that at age 32 she was too young to have breast cancer and refused to examine the lump she had discovered. But he was wrong.

Nine years since her breast cancer diagnosis, health care professionals have told her that had she waited a month to get a mammogram, her battle would have been very different. If she had waited two months, it would’ve been too late.

Born in Magnolia, Jeannie graduated in 1993 from Poyen High School and attended the University of Central Arkansas. Growing up, Jeannie was active and healthy, playing high school basketball and running track. “I never had any health issues really,” she said.

‘There’s something there’

It was during a Memorial Day trip to Greers Ferry with family in 2007 that she felt something that had not been there when she did her last breast exam. She asked her sister, Crystal Kemp, to check it, and she, too, felt something.

“I thought I was just imagining it, but she said, ‘No. There’s something there.’”

At her annual gynecological exam the next week, she was examined by a new doctor. “I said, ‘I need you to feel this,’ and he said, ‘I don’t do breast exams.’ I was like, ‘What? I feel something’ . . . He said, ‘No, you’re too young. There’s no reason to worry about that.’ He literally would not even feel of it,” she said, adding that a breast exam had always been a part of her previous checkups. “I was mad and thought this is ridiculous.”

Although she was not overly concerned, Jeannie went for a mammogram the following week. Her grandmother had breast cancer, but because of her age, it was recommended that Jeannie not get a mammogram until age 40. “I didn’t care if insurance would pay for it or not, I just wanted to know everything was fine.”

At Jeannie’s mammogram, something showed up in her breast, prompting an ultrasound. Afterward, the radiologist asked to speak with her. “He said, ‘I don’t want to scare you, but if you were my mom, daughter or my wife, you would see somebody this week and get a biopsy.’ ” His comments sparked some concern, but Jeannie had doubts that she was even feeling something out of the ordinary. “I still was thinking there’s not something there. My breasts are very, very dense. They feel lumpy anyway.”

The radiologist made the call to get Jeannie in for the procedure within the week. “I credit him with probably being one of the big reasons I’m still alive,” she said, adding that until that point everyone had acted like “it was no big deal.”

Jeannie’s biopsy was scheduled the following Tuesday. “That doctor was like, ‘I’m sure it’s nothing, but we need to make sure.’ I remember him saying, ‘This is so large, I don’t think there’s any way it’s something we need to deal with.’” The staff told her they would call the next day or two with the results.

“On Thursday, they called and said the doctor needs you to come in this afternoon so we can discuss your test results,” she said. “I had to wait probably close to two hours in the waiting room. They kept putting me in one place and then another. Everywhere I was, I was by myself. I was like, ‘What is going on?’ Later, I found out, he was saving me for last.”

JOURNEY BEGINS

In the exam room, the doctor put his arm on Jeannie’s shoulder and gave her the news. “He said, ‘Well, it wasn’t what we were expecting. It is cancer.’” The doctor, who was scheduled for vacation the next week, discussed doing a lumpectomy. Not happy at the idea of waiting until the doctor returned, she asked if it could be done the next day.

“They asked if I was sure. I said, ‘Yes. I want it out. I don’t want to wait a week.’”

Looking back, Jeannie admits she didn’t fully understand the journey that she was beginning. In her mind, the worst case scenario would be she would lose her hair. “I thought, ‘I’m 32. I’m healthy. I’m stubborn. It’s not going to be a big deal.’” Jeannie envisioned that her experience would be similar to someone she knew from a job she had while in college. “She was older than me. Seeing her go through it is probably the reason I handled it the way that I did. She kept working. She’d get her treatment, and she’d come to work. I just thought that was what you did.”

With the lumpectomy set, Jeannie began making calls to her family with the news. “I didn’t get upset until I had to tell my mom and my sisters. Telling your mom is not fun,” she said, fighting tears. Citing her personality, Jeannie told her mom by asking her if she could take off work the next day. “She asked me, ‘Why?’ I said, ‘Because I have to have surgery because it’s breast cancer.’ I don’t know that there’s a good way to say it, but I was very matter of fact and this is what we have to do.”

Jeannie and her younger sister, Amber, had participated for several years in the Komen Race for the Cure because it is a women’s issue and in memory of their grandmother and honor of her friend. “I called Amber and said, ‘Well, I’m wearing a pink shirt this year.’ She said, ‘What?’ I said, ‘It was cancer, so I have to wear a pink shirt this year.’”

It was more difficult to tell her older sister, Crystal, who was on a trip to Italy. “She was the most upset of anybody. She’s kind of like me and likes to control things and had no control over this.”

Jeannie said she didn’t cry when sharing the news because she still didn’t think it was a big deal. “Cancer didn’t mean to me at that point you may die. It didn’t. It meant this is kind of an inconvenience.”

During the lumpectomy on June 15, the doctor discovered that the tumor was larger than anticipated, requiring removal of more tissue. “I later found out that because of the size of it, I should’ve had a mastectomy.”

Jeannie said with the size and location of the tumor that there’s no way that she could’ve missed it during her self-exam. The extremely fast-growing cancer had not spread to her lymph nodes, but doctors later commented that it might have been a matter of days.

TRIPLE NEGATIVE

The pathology report indicated Jeannie’s cancer was Triple Negative. Jeannie’s first thought was maybe the “negative” was a good sign, but it wasn’t. She learned this type of cancer is not fueled by hormones or inherited, making it harder to treat. She would need both radiation and chemotherapy.

Jeannie remembers her doctor showing her graphs and charts on his computer in discussing the lab results. She was shocked to see the survival rate for women her age with the diagnosis. “For me, there was a 15 percent chance of survival at five years,” she said. “That was the moment for me. I didn’t cry then, but I thought, ‘Are you kidding me?’ I kept trying to rationalize why I only had a 15 percent survival rate.”

Jeannie chose not to share the statistics with anyone. “It was after my five-year survival anniversary before I told anyone. I wouldn’t say it out loud that I only had a 15 percent chance of survival. No one in my family or my friends knew. I just refused. I just never saw the point of telling anybody else. What difference did it make? I didn’t want to say it. I didn’t want to admit I had an 85 percent chance of not making it five years.”

TREATMENT

After she healed from surgery, her chemo treatment began the end of August at UAMS. Treatments, some weekly and others every other week, continued until April. She was supposed to have more chemo, but because of extensive nerve damage caused by the treatments, her doctor said if they continued she would be unable to walk or use her arms. After chemo, she had 36 radiation treatments at CARTI.

Prior to cancer, Jeannie rarely took a sick day. She was determined to continue working throughout treatment. During her first round of chemo, she worked extra hours early each week so she could receive treatment all day on Thursday. She worked on Friday until early afternoon when she began to feel sick, which continued through the weekend. “I couldn’t eat or drink anything or I would throw up,” she said. “A lot of time was spent lying on the bathroom floor on the weekends. I didn’t have the energy. I was getting the strongest (chemo) there was. It was bad.”

So sick and fatigued from treatment, Jeannie remembers one day, “deep into chemo,” that she was in a bad mood. Her doctor asked how she was doing and Jeannie replied, “You’re trying to kill me.” The doctor responded, “Nope, just as close as I can get without doing it . . . Jeannie, it’s the only way you’re going to live.”

With the second type of chemo, Jeannie experienced excruciating pain in addition to more nausea. “You felt like you had the worst flu you had ever had in your life, plus the throwing up. It was some of the worst I physically felt.”

In January, Amber gave birth, but Jeannie was so sick, she had to ask her brother, Jim, to drive her to the hospital to see the newborn. As she held her niece, Jeannie wondered about the future. “I began thinking, I’m not going to be here for her first birthday. It was that bad at that point. I hadn’t given up or anything, but in the back of my mind that was the reality.”

Now, when her niece’s birthday rolls around, Jeannie remembers thinking that she didn’t think she would see the first one. “During that time period, I was done. I was like this is not OK. I don’t want to do this anymore,” she said. “There were several times I wanted to say I’m done.”

When Jeannie began thinking that she might give up, she focused on her five nieces and one nephew and the life experiences she wanted to share with them — like shopping for prom dresses, watching them play sports and seeing them graduate. They knew that Aunt Jeannie was sick, but not to what extent. “I couldn’t imagine my sisters having to tell them that I was giving up or dying,” she said. “Up until that point, it had just been my stubbornness, but stubbornness can only take you so far.”

Jeannie said her strength during the battle came from her family, although she often went to doctor’s appointments and treatments by herself. “I’ve always been independent. Looking back, it was more I didn’t want them to have to see what was going on. I was trying to protect them because twice during chemo I saw people die. Literally, die while they were getting chemo,” she said. “Even my family would occasionally give me the looks that they feel bad for you. I hated that. I knew if they went to the doctor with me there would be a lot of that. It was selfish of me.”

Jeannie said if it had been one of her sisters undergoing chemo she would not have allowed them to go by themselves. “I said to myself at the time I was protecting them, but I was also protecting me from having to feel vulnerable. I would cry during chemo sometimes, and that’s not something they saw me do very often.”

Jeannie, her family and friends continue to participate in the annual Race for the Cure, which has become a celebration and a special time together.

The first race after the diagnosis, however, was difficult. Jeannie did not see herself as a survivor and opted not to participate in the parade for survivors. “I hadn’t earned the right to be over there,” she said. “I don’t think I appreciated it the first few years. Now, I’m to a point I appreciate it and thankful for what it means to be a survivor and encourage those that are just starting on their survivorship.”

Jeannie said seeing the survivors — those who have been survivors for many years as well as those who have battled the disease more than once — is helpful to those who are just starting their journey. “If you don’t have hope when you’re doing it, I don’t know how you do it.”

INSURANCE

While her body fought the cancer and the side effects of treatment, Jeannie also faced difficulties with health insurance and finances. “Nobody prepares you for the financial impact.”

One particular chemo treatment was $20,000 each round. “That’s just for the chemo. That’s not for them to administer it or for the lab or for the doctor. That’s just for the poison they are putting in your body.”

Jeannie’s mother encouraged her not to worry about the medical bills because she wasn’t going to stop treatment because of the expense, and it could be addressed later. “I had so much on my plate, that had I stressed about that, too, I would’ve been done. When the bills start coming in, and you’re seeing over $100,000 that you owe and then over $200,000 that you owe . . . In the back of my mind, it was kind of like I’m probably not going to be alive in five years. I never verbalized it, but I think that’s part of the reason I didn’t stress about it that much.”

Jeannie said it was also difficult to see patients who did not have any insurance getting the same treatment that she was receiving. “I’ve worked my whole life. I have insurance. How do I owe this much money and other people are paying nothing?” she said. “I had people in the medical field suggest to me that I would qualify for disability. I was just like, ‘No. I’m not disabled. I can work.’ It might’ve been easier had I not worked. The financial aspect is something I still deal with today.”

It has also been a fight for Jeannie to get insurance to cover some of her treatment. She and her doctor have discussed the possibility of a double mastectomy, which she felt was probably inevitable because of the type of cancer and the number of biopsies she’s had. “Insurance says it’s an elective procedure and won’t cover the expense. Sometimes I will fight for a while, and then I don’t even want to waste my energy on it. It’s crazy what they will and won’t approve,” she said. “You are physically and mentally exhausted anyway. The couple of breakdowns I had, that’s probably when they were — on the phone with insurance people . . . Who in their right mind would want a double mastectomy unless that’s what’s best for you?”

OTHER DIFFICULTIES

Jeannie has also been surprised by the reactions that people have had to her battle with cancer. She thinks people are generally uncomfortable when confronted with someone who has cancer and aren’t sure what to say or do.

After she lost her hair, Jeannie got a wig but hated to wear it because her head was hot and itchy. “I didn’t think the wig made me look better or make me more comfortable. If I put a wig on, it was for somebody else’s benefit,” she said, adding that she did it for her nieces and nephews because they were accustomed to seeing Aunt Jeannie with long blonde hair. She would wear hats, but if it was hot, she opted to wear nothing on her head, which resulted in stares and sometimes people pointing at her. “The only time the looks bothered me was when the kids were with me. They would get mad because people were staring,” she said.

Jeannie said she has considered writing a book about her experience and the “ridiculous things” that people have said. She learned that people will say “anything” regardless of how hurtful, but she just had to laugh. One person said, “Why don’t you wear a wig so people don’t have to look at that?” Her response was, “Guess what? Everything I’m going through with chemo, you don’t have to look at me. Look away. I have to do this stuff or I won’t be alive.”

On another occasion, during a rare opportunity to enjoy lunch with co-workers and not think about cancer, a stranger walked up to the group and asked, “Just out of curiosity. Is this a fashion statement (pointing at Jeannie) or do you have cancer?” Her friend stood up and responded, “Does it really matter? I don’t think it’s a concern of yours anyway.”

TODAY

Jeannie continues to have a mammogram and MRI every six months. While battling the cancer, treatments caused serious side effects as well as permanent nerve damage to her body. During the first two years, a scan revealed cancer on Jeannie’s liver, which was treated with oral chemotherapy. She also has had skin cancer on her breast caused by the radiation treatment.

When times were tough, Jeannie would remember something her mom would say when she was growing up. “Tomorrow is a different day and sometimes a completely different day,” she said. “I would have days when I didn’t think I could do it anymore and then something would happen . . . Just knowing that how things are today doesn’t mean how it will be tomorrow. It may be a lot better.”

Despite the early difficulties, Jeannie is thankful that the right things fell into place. She remembers and is thankful for the radiologist who met with her. “I didn’t think it was a big deal. He made sure I understood the seriousness of it. If I had waited two months, there’s nothing they could’ve done.”