By Laurel Morales
http://stream.publicbroadcasting.net/production/mp3/knau/local-knau-867565.mp3
Flagstaff, AZ – October is breast cancer awareness month. For about 30 percent of US women who are diagnosed with early breast cancer, the cancer will spread to another part of their body. It's called metastatic breast cancer. It wasn't that long ago that women diagnosed with metastatic disease were given only a year or two to live. But today women can live much longer with the disease, as Arizona Public Radio's Laurel Morales reports.
Gail Santilli was first diagnosed with breast cancer four years ago. She had one mastectomy and then a second. Soon the cancer had spread to her liver, lungs and ultimately, her bones. It was metastatic.
SANTILLI: Initially you know having Mets it meant you were a goner. You really drew the short end of the stick. Thank God there are a lot of really great treatments now. I mean I've been alive the last two and a half years and I intend to be alive a lot longer.
And she keeps a sense of humor about it with her husband and two daughters -- ages 18 and 22.
SANTILLI: So I made the joke to my family I'm going to be around longer don't be laying claim to my jewelry yet girls.
And with research trials and new treatments produced every year, she could live a lot longer.
Deborah Lindquist is a medical oncologist in Flagstaff and Sedona. She's also a KNAU underwriter.
LINDQUIST: We used to think of it as a terminal disease now we think it's a chronic disease they'll have ongoing treatment but they'll continue to live their lives and stay present in their lives and not just be home in a sick bed.
Many women with metastatic breast cancer live up to 15 years or more with the disease. But it comes with a price.
Santilli checks into the Cancer Center of Northern Arizona Healthcare every Wednesday for chemotherapy.
SANTILLI: I had treatment today so I have a stomach ache. I kinda don't feel well. You almost feel flu like. By Saturday or Sunday I start to feel better. I feel fairly normal on Mondays and Tuesdays. And then I get treatment on Wednesdays. You get into the rhythm of your treatment cycle. This is my new normal.
Every six months or so Santilli tries a new treatment with different side effects and that becomes her new normal.
When she was first diagnosed with breast cancer, the chemotherapy was intense.
SANTILLI: With the initial diagnosis you're counting off the losses left and right and they're visible. It's like ok there goes the hair, there goes the finger nails, there goes a body part there goes another one. It's just loss one after the other.
Now Santilli says it's a different type of loss.
SANTILLI: When you have metastatic disease it's a different kind of grieving. You're missing everything you thought was in your future.
Santilli, who's 54, had to drastically cut back her hours as a social worker for Flagstaff Medical Center. It's difficult to plan things like trips and retirement.
For most breast cancer patients it's scary but the treatment is often finite. For Santilli and others with metastatic breast cancer they have to shift their perspective on life.
And they feel a little left out of the pink ribbon parade every October.
SANTILLI: There's a lot of attention to detection and prevention and emphasis on cure which of course is critical. But sometimes when cancer reoccurs and matasticizes it's seen sort of like a failure and a lot of times women feel like they've failed.
Gail received some good news this week: she says her latest cancer scan looks pretty good. She tries to stay in the present because as she puts it you're fine until your not. That's the ambiguity and the insidiousness of the disease.
For Arizona Public Radio I'm Laurel Morales in Flagstaff.