Sherri Romanoski, breast cancer survivor

"People with cancer need to be their own best advocates."

Life was great. I had a wonderful family, three terrific teenage boys and an adoring husband. I was just nominated as one of the top 10 teachers in Arizona. I had helped my school attain national recognition and had recently attended an award ceremony in Washington D.C. And then it happened.

In November 2000 I got the phone call. The doctor politely confirmed my worst fears — I had breast cancer. I switched to autopilot and actually kept a dermatology appointment I had that day. I sat in shock in the waiting room, came home, walked to the backyard, propped myself up against the patio wall and wailed. I mean, wailed. Feelings of devastation, lack of control, loneliness and desperation all washed over me. I remember thinking, "I may not live to see grandchildren!" To a kindergarten teacher, that is real pain.

Information is power, and being diagnosed with cancer sent me into a state of emergency for gathering information to help me cope with my diagnosis and impending treatment. My doctors gave me information about my tumor and treatment plan, but how was I to handle all this? For a woman who was so on top of things before, I felt powerless.

Finding very little assistance to help me cope, I managed as best as I could. I went through three surgeries in 10 days to remove the cancer, and I was a fierce advocate for myself throughout my treatment. Later, after I had completed a very tough course of AC chemotherapy, I came to the realization that this coping problem existed not only for me, but other patients as well.  People with cancer need to be their own best advocates, but they also need to know that they are going to get the type of comprehensive care they need.

About a year after treatment, I attended an advocacy-building retreat for cancer survivors, called "Life Beyond Cancer." My good friend and oncologist — one of those astute guys who really know their patients — sent me. It was there I met Susan Leigh, a founding member of NCCS. She became, and still is, my advocacy mentor and a great friend. My focus became clear: I wanted to help make a change — to help empower others to become self-advocates and deal actively with the overwhelming fear that comes with a cancer diagnosis.

Together with input from doctors, nurses and other survivors, we spent two years developing an organization called "BAG IT" to fill this void for our community in Tucson.

As the name implies, BAG IT delivers a bag of educational material to newly diagnosed individuals with cancer and their families. The information is designed to help them cope with their diagnosis, and empower them to become active members of their treatment teams.

The BAG IT bags include publications and CDs from NCI and NCCS. They address essential areas like how to handle your emotions, make the most of doctor visits, deal with insurance companies, make difficult decisions about treatment choices, and address quality-of-life issues. There is support information for caregivers and lists of resources, too. The bags also include a binder that helps cancer survivors keep track of their vital medical information.

BAG IT is a great beginning resource to address coping and empowerment skills. It helps the newly diagnosed "Fight the Fear". Simple? You bet! Effective? Absolutely!

In the beginning, I was focused on trying to get newly diagnosed patients over that first insurmountable "bad hump" — to help them cope and become self-advocates. What has evolved is a much more comprehensive resource. We include the Cancer Survival Toolbox to address life after treatment. We are finalizing a summary and follow-up care worksheet to include in our binder for doctors to complete for each survivor. We don't think patients should wait for the electronic version to appear. People need their information NOW.

NCCS is devoted to the lasting effects of system changes. I think we are accomplishing that in our community after four years of delivering BAG IT resources to more than 7,000 patients across southern Arizona.  Here are the changes we have made in our cancer care health system:

1)      People are now routinely receiving timely information at their first office visits.

2)      Physicians are supporting the distribution of comprehensive information that address more of their patients' cancer concerns, not just their tumors.

3)      Patients are more aware and active in their care, treatment and healing process. They learn how to advocate for themselves.

So, in the end, what started as self-advocacy evolved into advocacy for others and then into changing our local health care system — which is in the best interest of all. BAG IT has now committed to serving the entire state of Arizona, because wouldn't it be grand to change these systems statewide?

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