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Monica Knoll is the founder and executive director of Cancer101, a website providing women with information about breast cancer, from diagnosis to treatment to lifestyle changes. She came at the[…]

Knoll offers advice to women diagnosed with breast cancer.

Question: What first steps would you recommend others take upon being diagnosed?


Monica Knoll: 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. It’ll-- 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. To go those-- 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.


Question: What can ease the financial burden of breast cancer treatment?


Monica Knoll: 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 major advocacy groups and cancer centers alike are really trying to break that barrier and let them know that there are- there is help out there for them.


Question: How can patients learn more about their treatment options?


Monica Knoll: We actually have a list of questions that were provided to us by ASCO, the American Society of Clinical Oncology. I would always recommend that people who have been diagnosed with cancer make sure that they go to those- to our web site or to and get those questions so that they are prepared to ask the doctor anything regarding the tumor size, what to expect, what kind of surgery, whether it’s a lumpectomy or a mastectomy and why would they recommend one over the other, to discuss hereditary issues, who in the family has had breast cancer in the past because that is a big- to understand and know your history as some people don’t know whether it’s because they’ve been adopted or because their family is estranged, they don’t know the family history, but it is important to gather as much information and bring that information with you so that the doctor can assess.

If you have history in the family, that only magnifies or-- I wouldn’t say magnifies. That only provides the doctor with more information to determine what type of surgery or treatment they would recommend.


Question: Can you have a normal life during treatment?


Monica Knoll: First of all, you have a lot of well wishers, a lot of friends and family that want to help you, and sometimes it’s a little too much and a little overbearing. The phone rang off the hook and you don’t feel well returning those phone calls so I think just letting everybody know in advance don’t be hurt or be insulted that I’m not calling you back. I just don’t have the energy. But usually the best way to go about it is to have one friend sort of be the command post and help manage your day-to-day needs.

I may recommend having one person always go with you to doctor’s appointments because you’re not going to be able to ask the right questions, you won’t listen very well because you are thinking about the last thing the doctor just said to you, so to make sure that somebody with a clear head can ask the questions and take notes it’s very important. If you don’t have someone to go with you, ask if a nurse can come in and take notes for you or often doctors will even let you bring in a tape recorder so you can listen back to the questions that you might have, listen to the answers that the doctors have.

I recommend giving- allowing yourself plenty of sleep. This is your time to do anything and everything you need to make yourself feel good. Don’t feel obligated to be part of an event or a birthday party. If you’re not feeling up to it, don’t go. People will understand. Do as much as you can. Let people at the office-- Depending on the type of work or job you have, try and lay out a plan that you can either leave early every day or help somebody-- have somebody in the office partner with you to take some of the burden off of your job. I made the mistake of trying to take on too much, working all the way through, and didn’t- felt guilty asking anybody for help quite frankly, and that was a mistake. I should have asked for help. I should have left every day at 3 o’clock whether I was tired or not to take care of myself and I worked all the way through until I literally would collapse and head home and sleep all weekend. So I don’t recommend that at all.


Recorded on: June 5, 2008.