brainmetsbc.org

Talking about Symptoms

At times, brain mets are found when doctors are looking for the cause of other problems.

Barbara had been having difficulty with tongue control, so her doctor ordered tests, including brain MRI, to find the cause. “The problem was with a bony metastasis in my skull,” she reports, “so the brain mets were an incidental finding.”

Claudia, diagnosed 19 months earlier with lung metastases, had a “true full-body” PET scan to see whether pain she’d been having in her knees could be a spread of her cancer. Because there was a “hot spot” in her brain, a follow-up MRI was done, showing a small lesion deep in the cerebellum. But had this caused the two brief episodes of dizziness she had recently experienced? “My oncologist was unsure if these were actually symptoms of my brain met,” she says.

“One day, I had a short dizziness episode while visiting my doctor,” says Alicia, diagnosed with lung metastases a year earlier. “My doctor ordered an MRI right away and found two little mets in the brain. It turned out that the dizziness was not related to the brain mets because they were very small. In some ways, God gave us a sign to check the brain early.”

It was only two months after her initial diagnosis with metastases in the mediastinum and “spots” on her pelvis and in her lung, that Patty reported another disturbing symptom to her oncologist. “Occasional peripheral lights in one eye is what caused my oncologist to order an MRI,” she says. “That was all.”

Sometimes, the women we surveyed had no symptoms—or at least none they considered out of the ordinary. Autopsy studies have suggested that some women who die of breast cancer have brain metastases that they didn't know about and that never caused symptoms. Clearly, some brain metastases never grow sufficiently during the patient's lifetime to lead to problems.

Diagnosed with metastatic breast cancer four and a half years earlier, Jane’s only symptoms of brain metastasis were a few sporadic headaches. Her brain mets were found after she investigated a clinical trial for a tumor vaccine at a cancer research center. “The doctor there told me she was recommending that all her breast cancer mets patients get a brain MRI once a year,” Jane said. She came home determined to get a scan.

Mary had been living for five years with bone metastases when she was given a brain MRI as preparation for a treatment change, to Avastin. Although that scan was negative for brain mets, she and her oncologist decided to defer taking Avastin for a while. A year later, however, a repeat MRI found 11 tumors, the largest nearly one centimeter: “I had experienced no symptoms at this point,” said Mary, “so the news was devastating.”

But for some women we interviewed, there were definite signs that something was wrong. Feelings of pressure, headache, nausea, a loss of equilibrium and dizziness are all symptoms of general swelling in the brain, and are common. More specific problems may be related to the location of the brain metastasis.

“I had suffered several bouts of vertigo about one month before it was determined I was Stage IV,” recalls Christine, who was restaged after an enlarged lymph node on her clavicle showed a recurrence of her original breast cancer. “My husband took me to the local emergency room and the physician attributed it to possible inner ear infection,” However, a brain MRI found three tumors. “After diagnosis and before treatment, I started losing equilibrium while walking.”

First diagnosed with mets nearly two years earlier, Jenny found herself bothered by light when she was shopping, and then experienced a headache for several days. “But so did everyone else,” she said, “The pollen count was atrocious.”

Elizabeth had been dealing with metastatic breast cancer for six years when she noticed symptoms in her arms and hands, as well an increasing fatigue. “I had trouble inserting keys into locks,” she says. “My hands were generally clumsy. One time I accidentally knocked my whole breakfast off the table onto the floor. I dropped things frequently and my handwriting was getting messier.”

Christina had metastatic breast cancer for two and a half years when she started having dizzy spells. “We recently found that the Taxol had quit working as mets had progressed to my liver,” she said, “so we did an MRI of the brain to ‘double check.’”

Diagnosed with metastatic disease two years earlier, Esther felt a sense of pressure in the back of her head. She was able to point out what turned out to be the exact location of the lesion to her oncologist. There had been other, less defined symptoms: “I also felt slightly nauseous, and a bit off, or sick, like something wasn’t right.”

Five years after her initial diagnosis with metastatic breast cancer, Cheryl began experiencing pain and pressure in her temples, and “a pounding sensation when walking.” While she reported this to her doctor, she thought it might be due to another cause: “I thought the headaches were caused by a new anti-nausea drug I was using.” Cheryl hadn’t given any thought to the possibility her cancer could metastasize to the brain, so she was stunned by the news. “I had headaches and pain in my temples for about three months, so my doctor set me up for a ‘let’s rule it out MRI’—surprise!”

For Sandy, who had been diagnosed with metastatic breast cancer two and a half years earlier, at first her symptoms were subtle. “I was teaching an aerobic dance class twice weekly, she recalls. “And a friend noticed that I was losing my balance during stretches, especially when my weight was mostly on one foot. Also, I was stumbling into walls when I woke up in the morning—before my eyes were fully opened.” A brain MRI revealed a solitary three-centimeter tumor.

While most doctors and nurses investigate symptoms promptly, and take appropriate action, others may be less attentive, causing unnecessary suffering. It’s often helpful if patients or family member are proactive, insisting on getting the care that is needed, and don’t hesitate to seek a second opinion if at all possible.

While Carol had been experiencing new symptoms—and faithfully reporting them to her oncologist for the past months—he had seemed unconcerned. Some of these symptoms were non-specific, while others were new and frightening to her. “More tiredness, slowness of motion and thinking, generally not feeling well,” she says, “but the biggest symptom was unsteadiness, and lack of balance.” Finally, at a routine appointment, “I could not walk in a straight line and actually walked into a wall.” But she was nevertheless sent home. The next day police and EMT were called after she took a bad fall on the sidewalk. After this episode, Carol was able to persuade the doctor on call to finally order an MRI, the results of which were delivered by cell phone by a doctor she didn’t know.