'I Beat a Rare Form of Ovarian Cancer Twice—But I'm Still Doing Chemo'
A survivor explains what it's like to have an indefinite chemotherapy prescription.
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.
Jackey first knew something was wrong when she couldn't pee while on vacation in March 2016.
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.
The day after her operation, the first thing Jackey asked her doctor, Konstantin Zakashansky, MD, a gynecologic oncologist at Mount Sinai in New York City, was whether or not she had cancer. Dr. Zakashansky's response: "Probably," but they were still waiting on the biopsy results to know exactly what they were dealing with.
Those results confirmed that it was cancer—specifically, ovarian clear cell carcinoma, an especially rare type in the US, accounting for just 5–10% of all ovarian carcinomas in North America, according to research published in the journal Gynecologic Oncology. 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.
After getting multiple opinions from New York City’s biggest hospitals on whether or not she should have a second surgery to remove the cancer from her lymph nodes, Jackey learned many doctors believed any further surgeries would be "pointless" and possibly dangerous to Jackey—except for Dr. Zakashansky.
"There was controversy [over] whether surgery is the right way to go because she had a very short interval to recurrence. Usually, we operate on patients that have long intervals,” says Dr. Zakashansky. (FYI: Having “a short interval to recurrence” means the cancer came back quickly.) Still, Dr. Zakashansky was the first to recommend another operation, arguing that if anything at all could be done for his patient, surgery was it.
Jackey had a second surgery in October 2016, in which she had cancerous lymph nodes removed. Luckily, during the procedure, doctors confirmed that Jackey's cancer hadn't spread to her liver, which had been a concern after the September CAT scan.
In all, her second surgery was successful. “Most of [the surgery] was just very tedious, careful dissection, removing all the enlarged lymph nodes. At the end of the procedure, she was completely free of disease,” says Dr. Zakashansky.
Then came the question Jackey still lives with today: When will her cancer come back, if at all?
That question was what prompted doctors to put Jackey on monthly infusions of a chemotherapy drug called Avastin, to reduce her chances of recurrence. (She was initially put on two other chemotherapy drugs as well, but both of those have since been dropped from her treatment routine.) Her doctor thought continuing chemotherapy after the second operation was the best course of action, since her cancer recurred after her first treatment plan failed.
Living with an indefinite chemotherapy prescription sounds scary—but not as scary, in some ways, as considering what might happen if she stops the monthly infusions, and the very aggressive cancer that managed to grow while she was receiving chemotherapy the first time around comes back for a third time.
Still, Dr. Zakashansky says he and Jackey have been talking about the possibility of quitting the maintenance therapy. She’s been doing so well and remained disease-free for so long that it’s tempting. “We’ve been talking about it. She’s nervous. I’m nervous. Everybody’s nervous about stopping it,” says Dr. Zakashansky, weighing the options. “Maybe we can [stop treatment] and everything’s going to be great, but how horrible everyone’s going to feel if we stop and everything comes back.”
Jackey's current situation—that her cancer hasn't recurred in three years—is a promising indicator of how she might do off of chemotherapy, mainly because doctors don't really understand why it hasn't recurred yet. “I can’t think of a case [in which] the patient failed primary treatment, recurred extensively, and continued doing so well,” says Dr. Zakashansky. That's because 70–80% of the time, ovarian clear cell carcinoma that has recurred in the past comes back again.
Dr. Zakashansky chalks this up to how drastically different the disease can look in different people. "That’s the thing about ovarian cancer," he says. "If you look at the numbers, they look terrible. But it’s a dramatically different disease, even though everyone gets treated the same."
Jackey herself has a number of theories as to why she’s done so incredibly well, despite her cancer's recurrence, crediting positive thinking, healthy eating, exercise, her faith, and her support system, as well as her work, which she's continued to do throughout her disease. (Jackey only missed two meetings—one in March and one in October, for each of her surgeries—but worked steadily despite her treatments).
As for her health and outlook on life, Jackey insists on looking to the future—even though her future is uncertain. Neither she nor Dr. Zakashansky know what will happen when and if she stops getting a monthly chemotherapy infusion, but she’s planning a vacation for 2022 despite that uncertainty.
“Ovarian [cancer] in general doesn’t have good prognosis. But you look forward,” she says.“You never say, ‘Why me?’ I said, ‘Why not me?’ I’ve had a great life, why shouldn’t I have this [disease]? This is part of life’s journey.”
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