By BECKY GILLETTE
When Freda Johnson was diagnosed with metastatic breast cancer in 2011 at the age of 41, what she read online was dismal.
“It was very shocking,” said Johnson. “What I read online was that metastatic breast cancer has no cure and you die very quickly.”
When Johnson had her first mammography as recommended at age 40, the scans were fine. A short time later, she felt a lump in her breast. She could tell by the look on the face of the doctor who did the biopsy that the lump was cancerous. He recommended she go to the University of Mississippi Medical Center in Jackson for further testing, and that is when Johnson learned her cancer had already spread.
When she met Dr. Barbara Craft, a medical oncologist who is an associate professor of medicine in the Division of Oncology, UMMC, Johnson said, “I don’t feel like I’m dying.”
Craft told her that advances had been made in the treatment of metastatic breast cancer.
“Dr. Craft said, ‘We’re going to treat this as a chronic disease’,” Johnson said. “She did, and I’m still here in 2017. I’ve had quite a lot more time than I was initially led to believe.”
Before learning she had breast cancer, Johnson had worked as a training coordinator at Slidell Memorial Hospital. Then she was laid off. She had been working in retail and didn’t have health insurance when the breast cancer was discovered. But a social worker at UMMC helped her get signed up for Medicaid and she went on disability.
“It does take two years to get on disability,” said Johnson, whose mother had stage one breast cancer at the age of 50. “Being diagnosed with metastatic breast cancer, I didn’t know if I would be around in two years. The social worker at UMMC helped a lot to make it possible for me to get the cancer treatments that I needed.”
Johnson first underwent chemotherapy to reduce the tumor as much as possible. Then she had a lumpectomy followed by a unilateral mastectomy where her right breast was removed and reconstruction done during the same surgery. Since the cancer had spread to her lymph nodes, they took out four lymph nodes.
She initially had radiation treatments in addition to chemotherapy. The chemotherapy treatments had to be changed up over time when they would stop working. The Herceptin and Taxol chemotherapy medications left her feeling very ill. But currently she is taking oral chemotherapy drugs every day, TYLERB and capecitabine, and finds those easier to tolerate.
“On the oral pills, I’m not having the nausea, but I do have cracking of the skin, especially on the hands,” she said. “It feels like a paper cut, but deeper. I try to stay away from the sea just because of the cracks in my hands. Water has microbes that can be harmful if you have cuts. I stay away from situations like that just because I don’t want anything to harm me.”
She also does intravenous therapy once every three months with a chemotherapy drug called Zometa that targets her bone cancer.
Craft said Johnson has HER2 positive breast cancer.
“Just in the past 10 years we went from having one agent against that kind of cancer to now having five FDA-approved agents to treat HER2,” Craft said. “And there are more in the pipeline.”
Johnson could have gotten the treatments she has received closer to home. Craft said the reason to come to a bigger cancer hospital or academic center is the chance to participate in cancer clinical trials.
“While we do have more treatments, unfortunately some patients still progress,” Craft said. “If Freda progresses, we need other options. We always hope there is a clinical trial and that there are other options for clinical treatment.”
Some of her friends had a hard time dealing with Johnson having metastatic breast cancer.
“Maybe they didn’t want to be around the sadness,” Johnson said. “I don’t have any ill will towards any of them, but you know who can cope and help you and who can’t. Your true friends stay with you. The ones you only thought were your friends turn into casual acquaintances. Sometimes, when people haven’t seen me for a while, they act surprised. I tell them, ‘Yes, I’m still here’.”
In addition to feeling she gets the best care and treatment for metastatic cancer that is available, Johnson credits her attitude, yoga, Zumba, exercise and prayer with helping her cope.
“I’m never been one of those gloomy people,” Johnson said. “I’ve always had a positive attitude. That keeps me going. I keep moving every day. I do Zumba classes and other workout routines. Exercise is really important. It elevates the mood. I do gentle yoga which helps because cancer affects my spine. What I want to get across to people is, yes, having metastatic breast cancer can be very painful. You have to keep moving through a little activity even if you would rather stay in bed. Yoga and Zumba also allow me to meet a lot of people, too. Some are older and have many health problems, but we are all moving and trying to live a healthier lifestyle. I never want to give up hope. That is what gets me through it.”
She also credits the support of friends and family.
“It is very sweet and endearing because my friends will ask, “Have you taken your pills?’,” she said. “I’m happy if I had to get metastatic cancer that I got it at the age I did because these drugs didn’t used to be available. I feel like I’m able to handle the drugs a lot better than if I was older. I think cancer is a great equalizer. It doesn’t matter your social background or education. It makes everyone equal. It makes you see things through different eyes. Things that used to get me very upset, I’m like, ‘Seriously?’”
Johnson also has lymphedema, which is swollen lymph glands. Her right arm is swollen, so she has to wear a compression sleeve. It is hard to find clothing that will fit her arm. At first, she thought that people might stare. But she has found that to rarely be an issue.
“And, at this point, I don’t care if they do stare,” Johnson said.
Another piece of advice she has is to find a good oncology team. If you are with someone you aren’t satisfied with, go to someone else.
“I’m very, very lucky I got Dr. Craft,” Johnson said. “She is wonderful.”