A need to stay organized during treatment inspired Knoll to found the CANCER101 organization.

Question: What inspired you to found CANCER101?

Monica Knoll: After I was diagnosed with breast cancer, I thought why was that so hard to get through? I always thought I was a little bit of a go-getter, being a marketing executive and I can get answers for just about everything and anything I need, but for me it was overwhelming. If I asked a nurse “Where should I get a wig?” and she had only one wig shop to recommend, I thought gee, that’s crazy. I live in Manhattan. There must be hundreds of wig shops. So why is-- Finding information and resources seemed to be a bit of a burden. It was all word of mouth, all after the fact. I was interested in learning about nutrition and I just missed a nutrition lecture at my own cancer center and as I- just frustrations on just trying to get those resources and access.

And also I like to stay organized but unfortunately because I was so focused on business and other women are focused on family responsibilities to mix your cancer information with your day-to-day schedules is really not a good idea. You really need to keep it very separate. I know there are baby planners and wedding planners but there wasn’t a cancer planner and that’s when I decided to really create an organizer to help cancer patients manage their medical care, keep all their information in one place.

They get this organizer at the cancer centers when they’re sitting down with the surgeon learning about their tumor so they have the resources and the information right there when they’re ready to ask the questions which we included in the planner, the questions to ask your doctor. It has a dictionary in there provided by breastcancer.org so we have select resources and a national list of resources so that patients when they do go home and want to go to the internet they can go into the directory and find out exactly what they’re looking for listed by subject matter. So if someone needed information about fertility or they look- wanted to find information about how to share this information with my children it’s listed in there.

Everyone has individual needs so it’s a little overwhelming digging through the internet trying to find that one resource that might help you with your needs, and we hopefully organized it in a way that makes it easy and digestible so there’s limiting the panic. And the idea again is to manage their care from the beginning but it’s a ten-year planner because we know that once their cancer treatment’s finished they still need to be responsible for their ongoing health and well-being and that includes followup doctors’ appointments. So the planner’s designed just-- As my mother took my baby planner to every doctor’s appointment, this planner is designed for cancer patients and then the- when they become survivors to take on to every appointment and they can track their information.

Question: What resources are on cancer101.org?

Monica Knoll: On my web site I actually created ten podcasts called Getting Through the First 24 Hours and each podcast talks- was designed by survivors and health care professionals to help patients and caregivers get through the process so I absolutely recommend going to our web site and clicking on our podcasts to learn more about how to get through the process.

And our web site also offers specifically right now for New York City and Chicago a very detailed listing of all cancer center and advocacy wellness classes, support groups, fundraisers, anything that you or your caregiver might need that might be close to home or close to your office. Often someone might be living in Long Island and they are working in the city and to find a support group at a cancer center in their hometown that’s a five-minute drive is really a wonderful tool. Unfortunately, most people just assume that they’re only invited to partake in resources within their own cancer center, but in fact all cancer centers offer free support groups and free lectures and libraries that are open to the public. So it’s really an opportunity for patients or people in need to find resources close to home or at a time that’s convenient for them.

Recorded on: June 5, 2008.