Like some people who have experienced cancer, Cindy Olmstead felt guilt over surviving when others have succumbed. She also harbored anger over being misdiagnosed for three years, an error that led to her cancer’s growth.
It took a symbolic walk on a red carpet five years after a successful mastectomy to make Olmstead realize it was all right to be alive, and necessary to redirect her anger into messages of hope for others.
“I spent five years being mad at the hospital that misdiagnosed me…And then I thought, you know, I need to expend some of this energy helping other people become aware,” she said.
It was 2008 when Olmstead found a lump in her breast. She got a mammogram through Breast Diagnostic Center in Ft. Wayne, Ind., and was told she had a benign cyst. But the staff said they had found a suspicious speck in her other breast.
Following three ultrasounds, a dye-infused MRI, and what she describes as “the stereotactic biopsy from Hell,” Olmstead was told nothing awry was found.
A private surgeon performed a lumpectomy, but test results from Ft. Wayne Radiology showed no anomalies. Even when a lump formed at the site of the lumpectomy a week later Olmstead was assured it was a harmless hematoma, a localized swelling filled with blood.
But the lump remained through 2009, and by 2010 Olmstead and her husband Bill were becoming alarmed. Her gynecologist suggested she be examined again by the surgeon. Olmstead had a mammogram that day, and a few days later the surgeon told her cancer was suspected.
“And I said, ‘But you were the one who said it was a hematoma.’ And she just had this look across her face,” Olmstead recalled.
That was Oct. 28, 2010. A mastectomy was scheduled for about two weeks later at Dupont Hospital in Ft. Wayne, Ind.
“I was laying on the gurney…waiting on my surgery, when our neighbor (in Wauseon), he brought us our mail,” Olmstead said. “In the mail was my mammogram report from Breast Diagnostic Center. It said, ‘We’re pleased to inform you we found no evidence of cancer in your breast.’ So there I was, 30 feet from the OR, and they’re still finding no evidence of cancer in my breast.”
With the mastectomy complete, Olmstead was scheduled for six to eight months of chemotherapy followed by six to eight weeks of radiation treatment. At that point she saw a television commercial for Cancer Treatment Centers of America (CTCA). She canceled her treatment schedule with the Ft. Wayne hospital and traveled to the CTCA location in Zion, Ill., where she stayed between Christmas 2010 and the following New Year’s Day.
The center’s first order was for an ONCO DS DNA test on her cancer. The test reveals what fuels the patient’s cancer, suggests what treatment should be administered, and gives odds of the cancer returning in 10 years.
And the results stunned her. Olmstead said a CTCA oncologist told her, “‘There is no kind of chemo that treats your kind of cancer.’ I was just in some kind of shock.”
The oncologist told her the center wouldn’t waste her time even attempting chemotherapy treatments.
What angered Olmstead was that the treatments prescribed in Ft. Wayne following her mastectomy would have proven worthless, and her cancer would likely have advanced. “The same services that misdiagnosed me were going to be mistreating me,” she said.
Her CTCA treatment oncologist, Dr. Dennis Citrin, informed Olmstead that most women misdiagnosed for that length of time would have died or been so advanced with the disease that nothing could have been done. Dr. Citrin said her case was so unusual “that it was going to give hope to the rest of his team, who might be able to give hope to other women in my situation with the same type of cancer.”
The DNA test revealed that female hormones were driving Olmstead’s cancer. She was placed on Tamoxifen, a medication which blocks the actions of estrogen and is used to treat and prevent some types of breast cancer. She was also placed on a diet, including supplements and vitamins, designed exclusively for her and based on the results of her blood work.
All of her treatments were supported by clinical studies.
Olmstead was also offered radiation treatments. But because she’d had extensive X-rays performed earlier in life due to a broken back, and because some cancer patients can die from treatments rather than from the cancer itself, she turned them down.
Now cancer-free for five years, Olmstead still takes Tamoxifen, and will continue the regimen for about the next 10 years, since studies indicate continued use is beneficial. She also visits CTCA every six months for complete blood work to ensure she remains healthy.
“They’ve just continued to say that I’m like a walking miracle,” she said.
Dr. Citrin said Olmstead had lobular invasive breast cancer, which affects only about 10 percent of women with the disease.
“Your average doctor won’t see it too often,” he said. “It’s difficult to diagnose; it doesn’t develop a discreet lump in the breast. The mammogram is often much less strikingly abnormal.”
Because it’s a less obvious, slow-growing cancer, it can sometimes fester for a long period before being discovered, Dr. Citrin said. Therefore, missing it during early examinations isn’t unusual.
He said because the cancer grew slowly, and despite Olmstead’s misdiagnosis, he isn’t surprised she survived. He said if she continues taking her medication over the next decade and responding well to treatment “we can be cautiously optimistic she can remain cancer-free.”
Olmstead was surprised in May to receive an invitation from CTCA to their two-day Celebrate Life event, to be held on their Zion campus for five-year survivors June 4-5. It proved to be filled with emotion and revelation.
Olmstead and the more than 100 other cancer survivors honored were treated to a fully organic filet mignon dinner. They were also presented with plaques by CTCA administrators commemorating five years of good health, and serenaded by a string orchestra from the Kenosha, Ill., high school. Each survivor was also featured in a video, and honored with a tree planted in their name in a national forest.
It was during the second day of Celebrate Life that Olmstead received an unexpected epiphany regarding her suppressed feelings of guilt and anger. It revealed itself when the survivors were asked to walk a red carpet in recognition of their continued health. The center’s personnel–including the CEO and president–and other well-wishers stood 10 deep on either side, cheering and clapping and offering high-fives.
Olmstead cried softly at the memory.
“I felt guilty because I didn’t die…It was like I escaped and got off easy. And, you know, I didn’t think I should be the queen of anything except anger,” she said.
“The doctors were crying, and the CEO had tears on his face. Ninety-nine percent of (the well-wishers) didn’t know me from Adam, but they’re all doing that. And I’m walking down there, and I’m thinking, ‘Maybe it’s okay to be proud of me, too.’ It was the first time that I was happy for myself. It was like people were glad that I was alive, and there was hope. That made it okay for me to have lived.”
The experience convinced Olmstead to let go of the toxic feelings she had fostered, and focus instead on spreading her awareness to other cancer patients. She insisted that a feature article being written not be exclusively about her.
“I want other women, other people…to know there is a place where there’s hope,” she said.
Dr. Citrin said a diagnosis of breast cancer is not an automatic death sentence. “The vast majority of women with early diagnosis have a good chance of survival. They can confidently be expected to be completely cured,” he said.
Olmstead, a freelance writer married to her husband Bill for nine years, said her perspective on life has changed.
“A lot of people will live and die never having experienced life,” she said. “I like to say I’m living life instead of life leading me. I can make choices for me. I learned to take each day as it comes.”