Monica Knoll, executive director of CANCER101, talks about what to do after being diagnosed with cancer.
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Establishing an Action Plan for Cancer The first thing they should do is really stay calm. They usually find out from the-- First of all, they usually find out that they’ve got breast cancer most often through a radiologist or the radiologist will call the primary care physician and give the news to him or her to forward on to the patient. So you really need to start to—You’re panicked. It feels like someone kicked you in the stomach when you hear “I’m sorry to tell you this but your tumor’s malignant.” The next step is to really see a breast surgeon and the breast surgeon is the person that’s going to determine whether your tumor needs surgery first or whether it needs to have chemotherapy first before the tumor’s removed or radiation. The surgeon determines the- what the treatment process—what direction you’re going to go in so I always say take a deep breath, find any—Honestly, I found any breast surgeon just to answer questions—I found out on a Friday and it was the Friday of Columbus Day weekend. To find a surgeon that was willing and able to meet us on a Monday. Most of them had the day off. The weekend without knowing anything was just really frightening. I can say that everybody’s breast cancer or any kind of cancer tumor is very individual and you can’t go on the internet and start researching before you know exactly what the tumor entails. There’s a lot of detail information that doctors won’t know until even after the surgery so to panic and go into reading the what ifs before you know exactly what your tumor detail is is really—It’s a bad idea. So I tell people to stay calm, call their insurance carrier. That’s the first thing to do. Find out of if- what your insurance can cover. Find out how to find doctors that are covered in your insurance so you don’t have to have excessive medical bills. That’s really important. And also once you call the insurance carrier ask if there is a person that you can speak with on an ongoing basis, one person who can be sort of an account manager so you don’t have to talk to new people very single time you pick up the call. That’s important too because you need that partner in the insurance area to answer questions. I like to tell people not to panic about any potential financial burdens because if they have insurance or little insurance the first thing they need to know is what’s covered. If they have little insurance or no insurance, there are resources out there for patients to help them manage their medical bills. Whether they help them negotiate lower prices, whether they go to the pharmaceuticals directly and ask for free chemotherapy, which can be provided based on their income, there are absolutely resources to help those patients. And I have a list of those resources on my web site. So one of the major organizations that I like to tell patients about if there’s a issue with their medical bills is to go to the Patient Advocacy Foundation and they’re based in Washington, D.C. They have an 800 number. They have a web site and they have people there who can help people with—anyone with a language barrier or cultural barriers, financial barriers, so if you’re—if you speak Spanish there’s an-- there is someone there to help them in their own language and help them manage and cope emotionally and financially to get them the help they need. The biggest unfortunate situation is that the highest rate of deaths are with people with language and cultural and financial barriers. And the medical community advocacy, the government, everybody is aware of this issue and doing everything they can to provide information and reach out to this demographic to make sure that their service-- their needs are covered and to let them know that they don’t need to go home. It’s not a death sentence. Unfortunately, many people of that demographic think that cancer is death sentence or they don’t want to burden their family with the financial hardship of caring for cancer and so CANCER101 and all other ma