brainmetsbc.org

What about prognosis and length of survival?

NEW ON THIS PAGE: Click here to READ THIS report from two neurosurgeons on prognosis in our selected bibliography section

While the women we interviewed understood that their situation was serious, most realized that their doctors would not be able to predict how successful treatment would be, if their  brain mets would return, or how long they would survive.

"I knew it was very bad, but didn’t ask for specifics," said Barbara.

“I did not ask about the specific survival estimates,” Carol said, “But I knew things were not good.”

Jane’s doctor told her that “the seriousness of my breast cancer had ‘jumped up a notch.’”

“I knew that my brain was now ‘seeded’ with breast cancer cells,” Sandy said, “And it would depend on how many, the location, and responsiveness to surgery and radiation, plus the presence or absence of peripheral brain damage, that would determine my survival chances.”

Christina, Esther, Sarah, Jenny and Alicia all said their doctors never discussed prognosis or survival time with them, nor did they ask.

 “Statistics are just numbers taking a general picture,” Alicia said by way of explanation.  “Each patient will do different (better or worse) or fall within the statistics. I believe I will do better.” 

Jenny’s response was similar. “I’m not a big fan of statistics as prognosticators,” she said.  “Every cancer is different, and I believe I am held in God’s hands.  I also think that the statistics are outdated.  They reflect older medicines and treatments, so I just kind of ignore them, even when I know what they are.”

“The neurosurgeon was extremely positive that my metastasis could be successfully treated,” added Sarah.

Patty, who has lived with brain mets for five years, did ask her doctor about length of survival when first diagnosed. “I pushed and the answer was 18 months,” she said. “But I was also told that ‘statistics’ were just lies…”

“When my first brain met was diagnosed,” Claudia said, “My neurosurgeon told me that he had other patients who had been successfully treated with Gamma Knife radiation ‘surgery’ multiple times for multiple brain mets over many years, including one patient who had Gamma Knife for new brain tumors every year or two who was still alive and doing well after about 10 years.”

It has been seven years now since Christine was diagnosed with brain metastases. “Fortunately, I found an extremely optimistic radiation oncologist,” she said. “Before my Mom passed away from metastatic breast cancer in 1989, she made me promise to live until at least 75.  I mentioned this promise to Dr. H. and he replied, ‘Why do you want to die so young?’”