Best Laid Plans
When Breast Cancer Hits Young- by Allison Samuels
Jasmine Johnson has always been clear about what, health-wise, the future would likely hold.
Her family history of breast cancer, she realized even as a small child, ran deeper than most. Her grandmother died of the disease before she was born; then, when Johnson was 5, she watched her 36-year-old mother die at home from the same illness. Some years later her paternal grandmother would also battle the disease and survive.
“My mother hated hospitals so she came home during the last part of her illness,’’ remembers Johnson, her mother’s only child. “She tried to hide her pain from me but I would see her sometimes when I ran around. I knew she wasn’t well. Even at 5 years old I knew about this disease.’’
At the tender age of 20 Johnson met the love of her life and future husband Justin at Stanford University. Together the two decided that in order to save her life she’d have surgery, the same actress Angelina Jolie has recently announced she had. Cancer, however, has a way of messing with the best-laid plans.
“I always knew I’d have to have a double mastectomy, it was just a matter of when. My husband knew early on the history of breast cancer in my family,’’ said Johnson. “I shared that with him in the beginning of the relationship because I wanted him to understand that this was something I would have to do. We agreed if we married, I’d undergo the surgery after I had a chance to have kids and breast-feed.’’
Shortly after graduation Johnson accepted a job at Disney Studios in Los Angeles and soon was production coordinator overseeing all production details on animated films such as Tinker Bell for the studio. After the couple married, she moved to joined her husband in Texas and to become a production manager at Reel FX, a live action and animated-studio/ film company.
Still committed to her plan of an early double mastectomy, Johnson maintained a regular schedule of visits to her doctor and performed monthly self-exams as prescribed. But her well-thought-out preventative plans had to be side tracked last July. Just two weeks after an OB/GYN appointment that included a breast exam, she leaned over a table at home to pick up a file and suddenly felt a large lump in her left breast.
“I’d just been to the doctor two weeks before and nothing was there,’’ remembers Johnson. “In that short time a lump large enough to feel without an exam appeared. I called the doctor immediately and had a biopsy within a week of finding it.’’
A biopsy of the lemon-sized lump revealed triple-negative breast cancer (TNBC), a form of breast cancer that is not hormone-based as most forms of breast cancer are. It’s also one of the most aggressive forms of the disease and even more so for an African-American woman Johnson’s age. Younger women tend to have more dense breast tissue, making it more difficult to diagnose and treat. And African-American and Hispanic women have a higher risk for this form of cancer, with African-American women having the lowest rates of survival. TNBC accounts for 15 to 25 percent of all breast-cancer cases.
Shortly after receiving the biopsy results, Johnson also asked for the same blood test as Jolie to learn more about her other cancer risks. She received similar results: Like Jolie, Johnson was BRCA1 positive, which meant she had the genetic mutation and preposition for both breast and ovarian cancers.
“It was interesting to read Angelina ‘s story a few weeks ago and realize how much it connected to mine,’’ said Johnson. “So many women face these same challenges and many around them don’t even know. It helps to hear another voice facing similar circumstances, famous or not.’’
“We had two weeks to decide if we’d do IVF … before starting chemo,” says Johnson.
With her test results and family history, Johnson assumed her doctors would suggest an immediate double mastectomy followed by several rounds of chemo and radiation. But her doctors wanted that order reversed. Because of her age and otherwise good health, her oncologist recommended several rounds of aggressive chemotherapy to reduce the size of the tumors before the surgery.
“I was like ‘Are you really are going to leave these cancerous tumors in me?’ But they felt at my age I could handle tough rounds of chemo first,” said Johnson. “That would get rid of the most of the cancer, the tumors, and the double mastectomy would be additional insurance that the cancer wouldn’t return later.”
Johnson and her husband both agreed that the doctor’s suggested treatment plan offered the best chance to restore her health. But the chemotherapy would also most likely cause infertility for Johnson, who was then 30 and still childless.
“We had two weeks to decide if we’d do IVF to harvest my eggs before starting chemo,’’ says Johnson. “IVF is pretty expensive so we were making these really serious decisions in the midst of trying to also save my life. Thankfully we didn’t come into it totally blind. A lot of women have to be convinced to have a double mastectomy once they are diagnosed. I didn’t have to be convinced at all. ‘’
Johnson underwent several IVF cycles just weeks before she began her grueling six months of chemo treatments. She continued to work at Reel FX, though many times it was from a lounge chair in her bedroom. In a show of support, on the days she could make it into the office, her co-workers wore pink shirts to encourage her in advance of her next appointment.
Just as her doctors hoped, Johnson’s tumors and the cancer were reduced significantly by the chemo. She had the double mastectomy in January of this year. The couple say they will wait for her doctor's clearance before starting their family. Johnson also plans to have her ovaries removed after her children are born.
“I think my biggest regret after reading about Angelina Jolie is that I didn’t have the double mastectomy sooner,’’ says Johnson. “I do wish I’d had it before I was diagnosed with cancer to avoid a lot of what I’ve faced this past year. But I’ve never ask ‘Why me?’ Too many people in my life faced the same circumstances to ask that question.’’