'I Beat a Rare Form of Ovarian Cancer Twice—But I'm Still Doing Chemo'

Rose Marie Jackey is sitting in her hospital bed at Mount Sinai Hospital in New York City awaiting her monthly chemotherapy infusion—a treatment she's been getting each month for the past three years.

It's what she and her doctors call "maintenance therapy," which, according to Jackey, makes it sound much more enjoyable than it actually is. "I'm not getting a facial here," she jokes. "It sounds like you're on some kind of wonderful fresh fruit diet or something." While it's a less invasive version of chemo, it still has some less-than-pleasant side effects, like mouth-blistering, overall fatigue, and an increased risk of kidney issues and blood clots.

But that "maintenance therapy," however unpleasant, has kept her healthy since her second surgery to treat a rare, aggressive form of ovarian cancer in October 2016—one that had already recurred despite chemotherapy once before, and one that may come back again. In fact, Jackey being alive and well today is a sort of "miracle," in itself, her doctor says—and is a testament to just how dangerous her cancer was, and how far she's come since first being diagnosed.

She asked her female friends, with whom she was traveling, what they thought was going on. They believed she just had a urinary tract infection. Her general practitioner based in New York gave her the same answer and prescribed antibiotics.

But two days later, when the antibiotics hadn't helped her situation, Jackey knew something bigger was up. She called her doctor in New York again, who told her to come home immediately.

Back in New York, Jackey saw a urologist, who misdiagnosed her a second time. He reduced her symptoms to signs of aging, diagnosing her with urinary incontinence, or a loss of bladder control. Jackey was less than thrilled with his evaluation. “It was awful. It was sexist,” she recalls. But she used the cream he gave her, hoping to alleviate her discomfort. After two days of following his instructions, though, she still couldn’t pee without contorting her body and physically "jumping" to force the pee out. "I was in pain," she says.

With that, Jackey called her doctor a third time, and he told her to go to the emergency room. She went to one on Long Island, where she lives, but still didn’t get any answers as to what was going on with her body. “No one examined me, nothing. They just put a catheter [a tube that drains urine] in.”

Finally, after days of being in pain and having trouble urinating, she found an ob-gyn who immediately confirmed that something was wrong. After looking at the results of a sonogram, the ob-gyn told Jackey to bring her husband into the evaluation room to hear the results. "She just kept saying over and over again, ‘I’m so sorry. I’m so sorry. You have a huge tumor blocking your urinary tract, and I think it’s cancer,'" says Jackey.

The next day, Jackey had her ovaries and uterus removed, and her doctor biopsied the tumor.

rose-marie-jackey-1 . Ovarian clear cell carcinoma is associated with endometriosis (which Jackey had), and average survival rates for the illness depend on the stage the cancer is in when it is diagnosed. Women who are diagnosed with advanced ovarian clear cell carcinoma "have poor survival," the research in Gynecologic Oncology says, adding that they are often chemotherapy-resistant.

Ovarian clear cell carcinoma is usually diagnosed when women are in their forties, Dr. Zakashansky tells Health. Jackey was diagnosed in her sixties, he says, explaining that made the case even more rare. Because ovarian clear cell carcinoma is so rare, doctors don’t know as much as they’d like about the best way to treat it. “We’re dealing with rare disease. There’s no randomized data, at all, specifically addressing the best treatment options for clear cell ovarian cancer,” says Dr. Zakashansky. “You kind of have to individualize [treatment plans.]”

At first, doctors were hopeful that the procedure she had in March combined with three months of chemotherapy would take care of the problem. But a scan in September revealed the cancer was also in her lymph nodes—and that it might be in her liver too. Her lymph nodes had been tested for cancer only four months earlier, and they were clean then, which meant Jackey's cancer continued to grow even while receiving chemotherapy.

That's the thing about Jackey's specific type of ovarian cancer, says Dr. Zakashansky: When it recurs, the chances of survival are not good. "It’s terrible. [In the] recurrent setting, those patients do not live very long at all. They generally do very poorly,” says Dr. Zakashansky.

Jackey's prognosis seemed especially grim, says Dr. Zakashansky, since it appeared she was chemo-resistant. "She had recurrence while she had chemotherapy. It kind of looked bleak at that point,” explains Dr. Zakashansky.

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