brainmetsbc.org

Life and hope after a brain mets diagnosis

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Asked for words of advice and encouragement to those newly diagnosed with brain mets or living in fear of getting them, the women we interviewed had much to say.

“Brain mets can be survived without taking away the you that you know, the you that is loved and known to others,” said Patty.  “That was my first greatest fear—that I would lose ‘myself.’

“Yes, brain mets are scary,” agreed Jenny.  “No one wants them, and I hope you never get them.  But you can still have a good quality of life with a diagnosis of brain mets.”

“Brain mets do change your attitude towards living a longer life, especially if you had bone mets only, and silently thought you could live forever without a spread of cancer,” Jane said. “It is a big wake-up call that this cancer is very real and serious, and reminds me to live each day to the fullest.  I actually like the energy and aliveness I feel on the many days when I have no pain nor cancer side effects.  My emotions run deeper and are more meaningful, whether positive or negative.”

 “I have learned that the brain has much capacity to adapt and to continue to function without debilitating adverse effects, in spite of brain mets,” said Claudia.  “There is much hope for successful treatment of brain mets and prolonged meaningful quality of life. I even have continued to enjoy traveling to other countries (a life-long dream) since the diagnosis and treatment of my brain mets!”

When discussing the impact of treatment on their lives, there were more reassuring words and advice.

“Treatment was relatively easy to get through. Don’t let the docs talk ‘prognosis’ or survival rates, Christina advised. “Just do what you have to do and move on.”

“Remember that brain mets can be treated successfully, that new radiation and drug treatments are working well, said Barbara.  “Question the need for whole brain radiation, but know that sometimes it’s the only viable option.”

While they had not expected to live for very long after a brain mets diagnosis, clearly some of the women we interviewed had survived for years.

“I can only say I was much relieved when I realized a friend of mine had originally had brain mets over four years ago, and is still clear,” Susan said. “I also try very hard not to worry about what might happen.’ 

 “So much depends on the aggressiveness of your individual cancer, the time to recurrence from original diagnosis, any other metastases, and overall health—and, the number, location and size of the brain mets, and whether they are symptomatic or not,”  Patty observed. “I was so sure that I would die within 18 months of my first diagnosis with brain mets.  I readied for the time of my death. Now, I’ve had to revise things a few times.  I wonder if I hold some kind of record for brain MRI’s, having had them on average every two months for five years—that would be around thirty, with bad veins!  I’ve had brain mets for five years and have been living with eight lesions for two and a half years.