ORLANDO, Fla. — Shari Johnson was not unfamiliar with breast cancer screening.
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She kept on top of them, including her regular self-exams. Her mother was diagnosed with breast cancer at 39, so Johnson started getting mammograms when she turned 30.
Then she was also diagnosed with breast cancer at 39.
“The interesting thing is that I just had a clean mammogram, and I had also been genetic tested, BRCA tested, which showed negative, so I did not have the genetic marker,” Johnson said. “So, that kind of gave me a false sense of security.”
When she first felt a lump in her breast while bathing, she thought it was a symptom of her menstrual cycle.
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But Johnson kept an eye on it, and when nothing changed after two months, she worked with her oncologist to “start the ball rolling” with a series of scans. They found large tumors at an advanced stage.
“And the reason it did not show up in the mammogram is because a lot of women’s breast tissue is dense and tumors are dense,” Johnson said. “And so they were literally hiding, and it had actually been growing.
“Being diagnosed with Stage 3B and I had lymph node involvement, (it) was quite a gut punch because I had been so diligent with watching,” Johnson said. “You know, doing my annual exams and just kind of knowing what cancer, breast cancer, looks like.”
Johnson went to multiple specialists to get opinions as she considered her family.
“At that time, my kids were really young,” she said. “They were five and seven, and I knew, that not really if, but when I was diagnosed, I just had a feeling I was going to get it, that I would do things very, very aggressively.”
That path included a bilateral mastectomy, chemotherapy for six months, radiation for six weeks daily, hormone therapy for 10 years and a hysterectomy.
“I just wanted any and everything taken out of me that would fuel the cells,” Johnson said. “Mine was ERPR positive, which is estrogen positive. So, basically, estrogen just fuels the cancer and progesterone. So, I wanted any factory that produced it in my body to be taken out.”
Like many other breast cancer survivors, Johnson relied on the love of her family to help her stay strong.
“It’s a really, really brutal road,” Johnson said. “It involves the whole family, and it really involves having, for me, a strong community around me. (It) was like such a tremendous blessing. Not just family, but friends who just stepped in and loved us so incredibly well, and just to help us get through the dark times.”
Her positive attitude was a guiding force as she navigated those dark moments – complications from radiation and wound healing after her reconstructive surgery. But she credits her Christian faith for getting her through the tough days.
“Keeping that at the forefront and knowing I was going to do everything I could to survive, to be here for my family,” Johnson said. “And so now, having been a survivor for 13 years, what I get to do now is really work with women, like mentor and journey with women, who are right in the heart of the battle.”
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Johnson said that since her family had already gone through a breast cancer diagnosis, they became actively involved with the Cure Bowl since it began 10 years ago.
Her husband was friends with Alan Gooch, the CEO of the Orlando Sports Foundation and the Cure Bowl, and served on the board. This year, Johnson joined the board.
Accepting the request to be the 2024 Cure Bowl ambassador was a no-brainer for her; she was honored to bring teams together to raise awareness.
“It’s the perfect way to enjoy college football and support cancer research right here in our backyard, right here in Orlando,” Johnson said.
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Above all, Johnson hopes patients, survivors and supporters keep a strong and positive outlook as best as possible. A few physicians told her that they knew she would do well on the journey thanks to her mental attitude.
“I feel like really focusing on the positive in one day at a time, and surrounding yourself with people who will love you and encourage you and who will support you is really key,” she said.
Writing a gratitude list helped her focus on the world outside her diagnosis.
“It’s something I still do today,” Johnson said. “I’m so thankful for the little things and the big things. And our life is made up mostly of little things, and so that’s why I don’t ever forget the little things that are stepping blocks to our joy.”
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