brainmetsbc.org

Making treatment choices

A diagnosis of brain metastases should be treated with some urgency. Brain metastases sometimes grow rapidly. Because the skull is a confined space, the increasing size of tumors—and the swelling this can lead to in surrounding tissue—can cause pressure on other parts of the brain, which can in turn lead to serious neurological damage and loss of function. For the woman herself, however, hearing the bad news about having brain metastasis and then having to go for immediate consultations about treatment can be confusing and overwhelming emotionally.

“My oncologist told me he had arranged for me to go immediately to the radiation oncologist across the parking lot, and that she and her team were waiting for me,” Jane recalls. “I remember being very overwhelmed by the news, and then with the speed things were moving. I had no time to adjust to this new information.”

Because the first line of treatment involves radiation, or, less commonly surgery, patients will be referred to a radiation oncologist and possibly to a neurosurgeon. If there are one or several small tumors, they may be given the choice of radiosurgery (radiation only to the tumor or tumors) prior to, or instead of, whole brain radiation. With a very large tumor, actual surgery may work best to remove the tumor and a small margin of tissue.

“I did not have anything recommended other than whole brain radiation because there were eight brain mets,” Jane continues. “I was so unnerved by having brain mets, that my concentration was not great, as it was only an hour after I had received the news. I remember just agreeing with her recommendation.”

Sometimes, different doctors will make different recommendations, which can add to the confusion women and their families may feel. For the patient and her family, it’s important to ask about and understand the reasoning behind these different approaches.

“The first recommendation was whole brain radiation,” Barbara recalls. “I asked about other options. The neurosurgeon said stereotactic radiosurgery would work better.” Since her lesions were small and treatable with radiosurgery, Barbara chose to have the radiosurgery. “The radiation oncologist wanted whole brain radiation afterwards, as a precaution. I declined.”

After looking at her scans, Jenny’s oncologist and radiation oncologist both told her that given the spread of multiple lesions, whole brain radiation was the only treatment that made sense. “The basic argument, which in retrospect could have been given in much scarier terms, was that the cancer was too widespread to make radiosurgery an option at that point. The radiation oncologist wanted to reserve it (radiosurgery) to take care of the larger tumors if needed or for a more localized recurrence. Both doctors held out hope that the mets could be managed.”

The radiation oncologist that Christina consulted said that if she wanted, she might wait for a month, then have another scan to see if the lesions had grown. But her oncologist strongly disagreed: “He believed in the possibility of the mets growing too fast and that I might suffer irreversible damage.” She decided on whole brain radiation, because “the spots were believed to be too many for pin-pointed radiation.”

Often, the best sequence of treatments will be clear from the circumstances.

Elizabeth was offered a clinical trial for brain mets. She chose not to enter this Phase III trial of a radiation sensitizer because it involved less radiation and the possibility that she might end up not getting the drug being tested for its ability to enhance the effects of radiation. “I had to have whole brain radiation first, due to the number of lesions,” she says. “They said that if spots showed up afterwards, we’d use stereotactic radiosurgery.”

For Claudia’s solitary small brain metastasis, radiosurgery was the first choice, her doctor told her, both because the tumor could not be removed surgically due to its location, and because the side-effects of focal radiation would be less severe than having whole brain radiation. As for concerns about other lesions, she was assured that Gamma Knife could be repeated, as necessary, and that “whole brain radiation could always be done for any new brain tumors in the future.”

Esther went for three opinions. One recommended whole brain radiation, followed by a Proton treatment. The other two opinions recommended different radiosurgery technologies, Gamma Knife or XKnife, with no additional whole brain radiation.

While Mary discussed whole brain radiation with her doctors, she elected to have her numerous brain metastases treated with radiosurgery, using CyberKnife. The eight largest tumors were treated in two sessions, and then monitored with watchful waiting every two months. After that, five smaller tumors were treated, though there were still some remaining. Determined to take an active role in her care, Mary made some bold, proactive moves. “The very smallest tumors cannot be treated safely with CyberKnife,” she explains. While her oncologist hadn’t recommended relying on chemo as a primary treatment of brain mets, Mary says, “I have switched from weekly Abraxane to a combo of Gemzar/Xeloda in hopes that the smaller molecule drugs (that may cross the blood-brain barrier) will help stabilize the brain mets as well as the lung mets which remain the primary concern.”

On the recommendation of her doctor, Christine also first chose radiosurgery (Gamma Knife) as her initial treatment. “I was told of the success rate of Gamma Knife, which was over 90%,” she remembers. “I also viewed a video describing the procedure in detail and what to expect over the next twelve months.” Unfortunately, the radiosurgery proved not to be enough for her HER2-positive brain metastasis.

“A six month follow-up brain MRI showed that I had developed numerous lesions and tumors. Whole brain radiation was my only option.” Alicia’s oncologist recommended whole-brain radiation, but with the support of her neurosurgeon, she chose to start with radiosurgery (XKnife). “It was successful because the follow-up MRIs showed a regression,” she says. “But I had recurrences and went back for more Gamma Knife.” This too was successful, and now, two years later, her brain mets are stable.

The radiation oncologist who saw Patty agreed with her oncologist that whole brain radiation was warranted. “Since I’d had time for research, I replied that from my understanding, focalized radiation was indicated,” she says. “At that point, my radiation oncologist said, ‘Yes. But there are most likely more mets seeded and you may need the whole brain radiation within a short time.’” She was prepared to take that chance.

Cheryl’s doctor offered that rationale as well, telling her that this treatment “was most effective against seeds starting to grow after other treatments.”

“I was put on steroids for the swelling in my brain,” writes Carol, who was also given no choice of treatments. “I had ten days of whole brain radiation.”

Sandy was given no choice for the 3-centimeter robin’s egg-sized tumor in her cerebellum. “I was told that surgical resection/craniotomy was the only choice available, due to the large size of the tumor, and because systemic chemotherapy doesn’t pass the blood-brain barrier,” she recalls. “When I asked what would happen if I refused surgery (I’m very frightened of going under general anesthesia), my oncologist painted a very grim picture of increased pain and possible paralysis as the edema and tumor pushed against the spine.” She learned that radiosurgery would be used a few weeks after her surgery, to “clean up the margins.”

Sarah was offered radiosurgery for her solitary 2-centimeter brain metastasis, followed by whole brain radiation, which she declined. “I just wanted to get on with it and was lucky enough for it all to be scheduled quickly. You just do what you have to do. It was a very scary time for us though, and I cried a lot.”