My name is Bonnie, and in 1983 when I was 33 years old I was diagnosed with breast cancer. There are so many things to deal with when you have a cancer diagnosis. The physical aspects of treatment, the emotions and feelings you have, and then you have to deal with the system: managed care, insurance companies, the whole healthcare bureaucracy. In a few minutes, you'll hear six cancer survivors talk about how they dealt with issues like understanding your treatment options and getting the information you need from your doctor, navigating the healthcare system, making sure your treatments are covered, and working with insurance companies and agents.

Medical broadcaster Andrew Schorr, the discussion leader, was diagnosed two years ago with chronic lymphocytic leukemia. Ann is from Massachusetts and was diagnosed with colorectal cancer in 1988. Susan from California is 41. She was diagnosed with breast cancer in 1991. Laurie is from Connecticut. She was diagnosed with lung cancer in 1988. Doug is from Minnesota. He is a 15-year survivor of non-Hodgkin's lymphoma and works in the health insurance business.

This discussion is unique in that it represents the view and opinions of real people living with cancer. This means that it does not necessarily represent expert opinion, nor the opinions of the American Cancer Society. Information represents what has worked and not worked for others dealing with cancer. People deal with their cancer in many unique ways. It is up to the listener to determine what is appropriate and relevant for them. We hope the information is helpful, and we welcome your feedback.

Anne, Massachusetts

ANDREW:
Anne, I understand that you found out you had colon cancer in 1988.

ANNE:
Yes, and I was asymptomatic in that I really had no symptoms before having screening and finding colon cancer. And as a result I had my rectum removed and a permanent colostomy. They wanted to take me directly from endoscopy to the surgical floor. And I'm very happy that I said no, because there was a sign on the wall that said you should not make decisions, because of the medication they gave you for this procedure.

It gave me time, then, a week or a week and a half to do surgeon-shopping, to find out as much as I could and to do pre-op education of myself and to know what was going to happen after surgery.

ANDREW:
Anne, when you put a halt to this kind of freight train that was starting, and the procedures the doctors wanted to do right then, how did the system, if you will, react to you bucking it for a bit?

ANNE:
Well, I didn't care. I wanted to be part of the process. So I found a surgeon who would make my husband and I part of the process, would explain everything to us, would give us options. And in the long-run, that was the best week and a half I spent.

ANDREW:
Anne, would you suggest for a newly diagnosed patient, a specific statement that they could say to a surgeon like you had, when they want to take that control?

ANNE:
Well, I think you do it through reflective listening. You just say, "I hear that you're saying that I need to have such and such done. In order to feel comfortable with that and to be the best patient that I can be for you, I need to have such and such." Education, resources, I need to investigate insurance, and just spell it out in that way. "I understand that you have my best interest at heart, that you want to do this procedure for me. I will be certainly willing to go along with all that, but first of all I need to have basic information and perhaps counseling."

ANDREW:
Wouldn't many of the typical hospitals where we'd be treated have a social worker who would be on-call that we the patient could request be brought in?

ANNE:
I believe so, and lots of hospitals are now going with Ombudsmen. And that may be someone who is a survivor and has been through the system, may not particularly have a degree in social work, but knows how to navigate the system.

ANDREW:
Will the doctor necessarily trigger that? Or do you, the patient, have to ask that?

ANNE:
I think it rests on the patient to do that, I think it depends on the doctor. In my case, the doctor I chose said to me, "You need to go and see an interstomal therapist nurse before we do this procedure. She will measure a stomasite, she will give you information, she will provide your husband information, she will contact the local Ostomy Association to provide you with a visitor pre-op." Not all doctors do that. So that if you don't have that, then you have to ask for it.

Anne, Massachusetts

ANDREW:
Now, let's go on beyond that, is, how did it work out for you related to insurance?

ANNE:
I did not hit any roadblocks newly diagnosed. However, after a few years, my husband's insurance abruptly changed so that they were not going to cover ostomy supplies, which are a prosthetic device. And they didn't notify us that they were not going to be covered. So, I took it upon myself to write a letter saying basically, what's the story here, and outlined the medical necessity for this and gave rationale for it, and asked my primary care physician to write a supporting letter, which he did.

The answer came back from the insurance company that the claim was denied, but that there was an appeal process. I went through the appeal process; again wrote a letter, also getting documentation from the original surgeon and the primary care physician. As a result of that, they gave me a timeline that they would respond. They did not respond within that timeline, so I wrote another letter saying, "I've provided you with information, you have not responded to me within the guidelines that you set up. You have not provided me with rationale for changing your policy. This is not acceptable."

As soon as that letter got to the patient representative at the insurance company, I got a telephone call saying, "If you will go with a mail order firm, we will cover your ostomy supplies forever. Will you accept that?" And I said "Yes, as soon as I receive it in writing."

So again, I think that, although it takes time, you need to go through the process and just be insistent.

ANDREW:
So, if you needed help like that, where would you call first, do you think?

ANNE:
Well, in our area, we have something called First Call, which is an 800 number that provides a number of services within the community. They're like a clearing house of services. I think the public library is a wonderful resource.

ANDREW:
I have a suggestion. That is to check with the local unit of the American Cancer Society.

ANNE:
Absolutely.

ANDREW:
They have many volunteers who want to help people like you. And also, I've heard a number of people say in the discussions we've had that a lot of people at their church or synagogues learn of their illness and say, "How can we help?" And often your response, if you accept, is, "Gee, well you could make some food or help me with carpooling with my kids," but it also could be, "Gee, if there's anyone with skills who can help go to bat for me with these issues with the insurance company, or help me. That's fair to ask someone in your congregation as well, certainly.

ANNE:
Absolutely.

ANDREW:
Okay. Anne, stay with us, we'll have a group discussion and then I want to go on to Susan. And thanks for all those suggestions.

Susan, California

ANDREW:
Susan, I'm been told that before you ever dealt with cancer in your life, personally you were around people with cancer in your work, is that right?

SUSAN:
Right. I have been working at the University of California, San Diego Cancer Center since 1987.

ANDREW:
So first, advice for people - you were kind of on the inside of the system - who might find themselves at a cancer center, newly diagnosed. Some pointers for them on how they can draw on the resources to navigate the system.

SUSAN:
You need to educate yourself. And you can do that a number of ways. One, you can go to the library and check out books that they have on your disease.

You can also talk to other survivors, and many hospitals and different organizations that have survivor groups that will hook you up one-on-one. The ACS, for example, has the breast cancer Reach to Recovery program. I would suggest that people contact them for breast cancer, but I know that they have other supports.

Hospitals often have programs that are very similar. They have peer support, one-on-one peer support, they have navigator programs. Many of them, as Anne said, do have ombudsmen.

ANDREW:
Those are some great recommendations, Susan.

Laurie, Connecticut

ANDREW:
I'm going to bring Laurie from Connecticut into our conversation. Laurie, you've dealt with lung and cervical cancer and now you are a counselor for people with cancer. Can you speak on how to cope with some of the financial concerns that people have, especially the concerns for the single woman?

LAURIE:
For someone who had a couple of bad bouts with cancer, I'd had cervical cancer years before, it was painless as far as paying for it or having anything like that. I worked at Yale University. I belonged to Yale's health plan. One day I needed a new primary physician, got one, as part of my physical. They saw a hole in my lung and I was immediately referred to a thoracic surgeon who later on gave me other people, an oncologist, a radiologist. It was all done within the system, no cost to me, and I researched a little on my own but that's about all I did.

ANDREW:
So, Laurie, let me ask you some questions. Someone is newly diagnosed, and they're a single woman like you were when you were diagnosed with lung cancer. What suggestions would you make on how they can navigate the system?

LAURIE:
They should not, as a single woman, all by herself, living alone, go back home. They should go to... Gosh, I don't know what they call it in other states, but it's sort of like, not a nursing home, but a rehab center. And be there and not be by yourself while you're trying to get off the Percacet and all the other stuff you're on. You should not go right back home to being all by yourself.

ANDREW:
So, advocating for yourself and saying, you know, doctor, or case worker, whomever, I live alone and I... or maybe someone lives far away from family, as well, and said, "I really need some help."

LAURIE:
You have to.

ANDREW:
Laurie, now I understand you have some financial advice for people as they deal with the hospital bills. Am I right about that?

LAURIE:
Please do not get a shoebox and start putting bills in it. So what I say to people, and I said the same thing to myself, don't panic! This is going to be paid! These bills are going to be paid.

Now, I happen to be elderly now, I wasn't then. These bills do get paid. And if you can't pay them, someone else will. You'll go on Title 19 or do something. You've got to sit down and figure it out.

And that's where I think Anne was saying, you can get help by doing a lot of things, one of which is senior citizens groups. Even if you're not a senior, they can tell you what to do, too.

Susan, California

ANDREW:
I'm going to bring Susan back in to this discussion. Susan, are there some things that the patient or the caregiver should say when somebody is newly diagnosed to try to get the wheels of the system going, drawing on services that may well be there but just were not mentioned and they weren't aware of it?

SUSAN:
Yes, there are. In a perfect world, programs would be integrated. But it's not a perfect world and I know that not all hospitals and all patients have access to that.

I think it's very important to bring with you, to your appointments, somebody else that can ask all those questions that are neglected to be answered or that the doctors don't bring up, such as, "Is there a social worker here that I can talk to? Where can I get more information?" And the physician at the very least should be able to answer those questions for the patient.

ANDREW:
Now, do we need also to ask financial questions? Are there financial counselors usually available as well?

SUSAN:
Absolutely.

ANDREW:
Now, you mentioned having someone, a family member or a friend who maybe could be helpful when you're newly diagnosed in dealing with all the emotional issues and the worries about your future.

ANDREW:
Is there a type of person who can be most helpful to you as you go through this process?

SUSAN:
I think the most important thing is to bring somebody in with you that can listen. Because one of the things that I found out that was...that I didn't actually even realize 'til much later, later on after my treatment, was that things that I heard my doctor say were not the same things that my husband heard the doctor say.

I think it's very, very important before you go to see a doctor to write down on a piece of paper a list of questions that you want to have answered. And as those answers are given to you, to write down what the answer is, and if more questions come up that you hadn't written down, ask those, write those down and write down those answers as well.

ANDREW:
There may be someone listening to us who is so devastated by the diagnosis that they don't know the questions. Where do they start? Where could they find a good starting point for what questions to ask?

SUSAN:
A good starting point, I would say, is to find a cancer survivor that you can talk to. And how you find that if you don't know who a cancer survivor is, a lot of times if you let people know that you have a diagnosis, people will start coming out of the woodwork. People that you have known for years will say, "Oh, yeah, I had cancer ten years ago and never told anybody about it!"

Another way is through your church or through your colleagues at work, other organizations that you participate in.

Another thing that you can do is to contact organizations such as the American Cancer Society, that can help you either connect with somebody or have lots of information written in... on pamphlets that will give you a good idea.

ANDREW:
Susan, are there some specific questions you think should always be asked?

SUSAN:
I think the most important question is, "Am I going to be part of this team?" Where I work, our philosophy is that all of the members of the medical profession are part of the team and the patient is the captain.

Susan, California

ANDREW:
Now, a couple of things just about your own personal experience. My understanding, from what I read in a national article, was that, because you were of Asian descent, the fact that you had breast cancer was not acknowledged, almost, or that you could possibly have breast cancer. Do I have that right that you almost had to fight for treatment?

SUSAN:
I absolutely had to fight to get a biopsy. I had a couple things going against me and one of those things was that I was only 34 years old, and the second thing was that I'm Asian. And so what my surgeon told me is that Asian women do not get breast cancer and he absolutely refused to do a biopsy, even though I pleaded with him!

So, after a month I went to get a second opinion. That surgeon told me exactly the same thing. He said he agreed with my surgeon and he could tell me with 99.9 percent certainty that I did not have breast cancer. And at this point I was... had more of my militant advocate hat on, and I said that I wanted a hundred percent certainty and I wanted a biopsy. I demanded a biopsy and he obliged me.

And during the surgery, which was done under a local, he took out the lump and he showed it to me he said, "Ah, now see, you have nothing to worry about, this is not a breast cancer, it's been there at least ten years and I can tell by the amount of fat that's growing around it." And the next day I got a call saying, "I'm very sorry to tell you, but you have breast cancer."

So I really believe that through doing breast self-exam and listening to my inner voice and my woman's intuition, that I saved my own life.

ANDREW:
Following your instincts is a good thing in navigating the system throughout treatment?

SUSAN:
Oh, absolutely! I think that you have to trust yourself and trust your body. Obviously, my body betrayed me, but what I trusted was my ability to reason that this was something that needed to be checked into, that needed to be biopsied.

But what I hope that people will do is just, whether it's for themselves or for somebody else, to find somebody else, is that they will find somebody that will help them navigate through all of the problems that might present themselves.

ANDREW:
The doctor who 99.9 percent said it would not be cancer, when he called you to tell you it was cancer, did he apologize or acknowledge that he...

SUSAN:
Well, that doctor actually, he said he was so shocked when he got the report that he walked down to the pathology lab to check and make sure that they had not mixed up my specimen with somebody else's. He was very surprised and very upset.

ANDREW:
OK, Susan, thank you very much.

Doug, Minnesota

ANDREW:
I'm going to turn to Doug who is joining us from Minnesota. Doug you're a fifteen-year non-Hodgkin's lymphoma survivor. You went through two surgeries and chemotherapy. But in your work life you have 36 years of experience in the health and life insurance business.

Doug, could you give some advice to a newly diagnosed patient with health insurance. How do they go about making sure things are covered before they start treatments?

DOUG:
Well, it depends on the type of plan that you have, but most groups today have an 800 number and a nurse call type referral circumstance that you have to phone in first. So I would always encourage a person to check before they have the treatment. Now obviously, if there's an emergency, there's a provision within that to carve that out.

ANDREW:
Now, if you're employed, would it be worthwhile to check with the human resources people?

DOUG:
Yes. Often, they can provide answers, but not always to detailed questions. If they cannot answer the question, they can at least then put you in touch with the broker or the agency that is handling the insurance for their firm.

ANDREW:
What advice would you have for someone who is newly diagnosed on how they can have someone else think about these insurance issues for them? What would you suggest?

DOUG:
Well, I would suggest if you have a representative that has worked with you or your family in insurance for years, that you would then lean on that person, just appeal to them to perhaps assist you in trying to identify or find out exactly what is available to you.

ANDREW:
So, people who have been your long-term clients, they're often asking you, they say, "Okay, Doug, we've been dealt this curveball now, how... what do we have to think about related to insurance?"

DOUG:
Exactly. And not only the client but their relatives and their friends, and I mean it just is endless. It goes on. But that's part of giving back, in my opinion, as to what I've gained from others through the years.

ANDREW:
So in other words, for a newly diagnosed patient, make a call to your insurance agent, or perhaps to a respected insurance agent of a friend or family member as a sounding board to take a look at your situation.

DOUG:
Exactly.

ANDREW:
And then, further than that, if you are in a situation maybe a little more dire or you're on an insurance or risk... have insurance...maybe don't have the coverage you need, the state or some special program could be a resource.

DOUG:
Yes. And again, if you bat zero in those areas, then I would not hesitate to go on to your congressional representatives.

Doug, Minnesota

ANDREW:
Now, just a couple more things. So, disputes arise. . And what do you do then? How do you deal with the system to say, "Hey wait a minute, it is being done at leading major cancer centers with good results, and I think that this may well be indicated in my case. I believe you should pay for this."

DOUG:
Every insurance company or provider will have an Appeals Committee. And that's exactly the time that you would want to go to the Appeals Committee, and then if you cannot represent yourself, have an attorney or a good family friend with a strong business background - and again, the intervention of a Congressional Representative will, almost all the time, get an insurance company off of dead-center.

DOUG:
I would almost bet that there is some attorney in each community in which we reside. For example, in Minnesota, we have an ex-insurance commissioner, and he has made a practice of assisting people to get the benefits that are stated in their contract from insurance companies.

There are many ways... I mean, an insurance company is in a business for a purpose. That is, to provide benefits at a certain contribution to the bottom line. And it's often times, unfortunately, the bottom line that they're more concerned with.

And so we then have to apply the appropriate pressure from whatever avenue we can use, to get the other part of the insurance, which is the benefit that is inherent from the contract.

ANDREW:
And I'd like to underscore that by saying that's coming from you, Doug, who is in the insurance business for 36 years, but has dealt with cancer yourself.

DOUG:
Exactly.

ANDREW:
Well, I think what this comes down to, and I've heard it from so many people, and Susan was talking about it earlier and I know Anne is quite an advocate, so you say that too, Anne, is that it's our lives on the line! Us! I mean, to an insurance company or a hospital, we're one of many. But to us, we're one! And to our family, there's only one Andrew, there's only one Anne, Laurie, Barbara, etc. And so, we've got to, or our family has to speak up for our long-term health and hopefully a cure, and rattle cages to make sure that we're getting the best treatment and ideally, getting our due from the insurance system so that we're being well taken care of and the proper treatments are available to us and are covered. If we don't do it, who will, right?