What to do when you get diagnosed with Stage IV breast cancer: some starting thoughts…especially about children

October 5th, 2012 § 24 comments

I loved the book The Age of Miracles by Karen Thompson Walker. I had the pleasure of meeting the author a few months ago. In the book, the earth’s rotation starts to slow. The days stretch longer with obvious consequences on daily life with some not-so-obvious effects on personal lives. I found the book immensely readable, creative, and thought-provoking (My teen daughter thoroughly enjoyed it too. It’s absolutely appropriate for that age group).

My own life has suddenly taken an opposite turn. It feels as if the world has sped up. The days are flying by. There just isn’t enough time.

It’s only been four days since we had an inkling from my oncologist that I had metastatic breast cancer, three days since I have known for sure. And now, in the middle of the night, it’s time I long for. The Earth is spinning so fast… how can it be I’ve been awake for two hours? Have I spent them wisely? What else could I be doing with those days, minutes, seconds?

I’ve done so much already.

I wanted to share a few ideas on things I’ve done already, many of them pertaining to my children. In the dizzying days after a metastatic cancer diagnosis there is so much emotion that it might be hard to think about what to do. You feel helpless. In some ways you are helpless until you get more information. But in the meantime here are some tips about what you can do.

I understand that not all of my readers have children. But for those of us who do, helping children adjust to this news is vital. It not only helps the children but can help relieve some associated stress for the parent.

  • Don’t share your news until you know for sure what your particular diagnosis is. I don’t think you need to know your exact treatment; that takes time. But even knowing a general range of what might be used is helpful. If you have had cancer before, children will usually want to know if you will be doing the same thing (especially if it has to do with hair loss) or if it will be different.
  • In my case I needed to have a mediastinoscopy with biopsy after my status was confirmed. It’s an outpatient surgery that inserts a camera through an incision in your neck to grab some lymph nodes for biopsy. I decided to focus on that concrete event mostly… it’s something children can wrap their heads around… Mom is going to the hospital (not uncommon in my household), having a small operation, will be back tomorrow night. I explained the cancer, the metastasis, and answered lots of questions, but I think the “one step at a time” was more easily tangible with the surgery as the immediate hurdle. If you will need an overnight stay for your particular surgery I think it’s best not to spring that news on children if possible. An overnight absence is best with a few days’ notice. Children, in my experience, are usually a bit clingy after bad news and that would provide the opportunity for follow-up questions and reassurance.
  • Be sure you understand your diagnosis. Explain what words mean to children and to your friends. There are many misunderstandings about cancer and stage IV cancer. The word “terminal” might be scary. Stage IV cancer is not the same diagnosis in different diseases. Prognoses vary and some types of metastatic cancer can be slow-growing or respond well to treatment, allowing years of life.
  • I think the phrase “it’s not curable but it is treatable” is important to teach and use.
  • Wait to share your news publicly until after you have told your children (except with a few close friends you can trust to keep the information to themselves. This determination may not be as easy as it sounds). This also gives you a day or two to begin adjusting to the news so that when you do discuss it with your children you might have emotions a little more in check.
  • As soon as you tell your children, be sure to tell adults who work with your children on a regular basis. If your children have learned the news, by the time they go to school, lessons, and sports, their teachers need to know. Email coaches, teachers, school administration, guidance counselors, school psychologists, and music teachers. Grief in children is complicated and it’s important that all of the adults know and can be on the lookout for odd behavior. Also, they need to be understanding if things don’t seem to be running as smoothly at home or a child seems tired or preoccupied. Two-way communication is key. Adults need to know they have the opportunity to bring any problems they see to your attention easily. Encourage them to do so, whether what they observe is positive or negative.
  • Use counselors, especially school psychologists. My first call yesterday morning before I left for surgery was to reach the high school psychologist. Because she is in a new school (high school) I didn’t even know which person it would be. Even though it was only 9 in the morning when I called, she had already received my email (forwarded from the guidance department to the appropriate person) and had a plan in place to find my daughter during 2nd period study hall. She was able to introduce herself, talk to my daughter, and let her know how to get in touch with her as needed. They set up an appointment to meet to talk more in depth after their initial chat. Paige likes her, feels comfortable with her. This resource is invaluable. After my mother-in-law was killed in a car crash 3 years ago, the middle school guidance counselor became a refuge for Paige. When she was sad, distracted, needed a place to go have a good cry or talk, she had a safe place with an adult to help her. These individuals are part of my team. We are working together and it’s so important to use them.
  •  I have always felt that it’s important to be honest about a diagnosis; that is, open and public. I know this doesn’t work for everyone. The downsides of being public about a diagnosis are outweighed by the negative pressure for children if they have to keep a secret and bury feelings about such a serious topic. Children take their lead from you. If you are up front and comfortable discussing it, your children will learn to be that way, too.
  • Call your other medical professionals and tell them of your diagnosis. Not only will they want to know because they care, but there may be instances where treatments may need to be examined or medications evaluated more often (for example, my endocrinologist wants to monitor my thyroid hormone levels more often than usual). They are all part of your team. They want to know. Many of the most touching and heartfelt phone calls I got were from my doctors this week. They cried with me, gave me information, offers of help, and caring. It also means if you have a situation when you need urgent medical care their office will already be aware of the situation and will likely respond more quickly to get you in to see the doctor.
  • A carefully worded email is invaluable. Accurate information is documented so people don’t spread rumors. Friends can refer back to it if needed without asking you. They can forward it to other individuals easily, as can you. Choose your words carefully. The words you use will be repeated so make sure the email says what you want it to say to friends and relatives. The right explanation is much more helpful than a quick one sentence Facebook status update. People will have questions, and you can head many of them off by including that in your email (if you so desire).
I will be posting more tips about what I’m doing in the weeks and months ahead. Hopefully they will help you or someone you care about. There is so much you can’t control during this time, and that’s unnerving. Even taking steps like these can give you concrete tasks and a feeling of accomplishment that you are helping yourself and those you love.

 

Tips on what to do when your health insurance company denies your claim

March 29th, 2011 § 12 comments

I get asked a lot about health insurance claims. Having had many different diagnoses, surgeries, and procedures I have became all too familiar with interacting with insurance companies. In the last few years my diagnosis of breast cancer and the almost simultaneous diagnosis of our son Tristan with congenital spine and hand abnormalities has meant a level of paperwork, claims, and appeals I could never have imagined.

Navigating the maze of medical care and health insurance has become second nature to me. I think I’ve resisted writing this piece because initially I thought there wasn’t much to say. Having worked on this piece for weeks now, I realize the opposite is true: there is too much to say. Because each case is different it’s very hard to offer advice on what you, the reader, should do. But I’ve decided that’s the beauty of the blog format: I don’t have to cover all the bases. I don’t have to have all of the answers. I just need to do my best to help. And so today I’m starting to tackle this beast.

I’ve had many requests to write pieces about how to win against health insurance companies and many have suggested I go into this as a profession. I’m not sure about that one but I am definitely willing to share some of the insights I’ve learned throughout the past few years. I do think my upbringing in a medical household (my father was a cardiothoracic surgeon) helped familiarize me with medical terminology and how to correctly present a medical history.1 In addition to my tips you may be interested to read Wendell Potter’s recent advice in The New York Times: “A Health Insurance Insider Offers Words of Advice.”

Don’t take ‘no’ for an answer

The first piece of advice I have is simple: don’t take no for an answer. The fact your claim was denied is the starting point not the ending point. Insurance companies count on the fact that a large percentage of subscribers will receive a denial and either 1) forget about it, 2) intend to file an appeal but not follow through, or 3) incorrectly file the appeal paperwork (see Potter’s article, above). In any case, if they send you a claim denial and you don’t follow up for any reason, they win.

Always appeal

If you receive a rejection to a claim you feel you are entitled to always appeal. When I receive a claim denial I roll my eyes, roll up my sleeves, and say, “here we go again.” It’s what I expect, but it’s never the last word to me. Now, that is not to say that you always win– but it would take way more than one denial for me to accept that I’m not entitled to have a medical service covered. Persistence and determination are a large part of what it takes to win.

Physical (especially congenital) problems are easier to appeal than those related to developmental delays. I have little/no experience with appeals for diagnoses related solely to delays; while many of my general tips will still apply, more specific ideas will hopefully be available elsewhere online for those types of claims. I do know that when it comes to dealing with insurance companies those types of diagnoses are harder to quantify; this often leads to greater challenges with insurance appeals. In my experience, if the delays can be linked to anatomical problems, orthopedic issues, or diagnoses that can be validated with tests like MRIs or CTs, the case will be easier to justify.

Insurance companies must give you a reason whey they are denying a claim. Most often this reason is that 1) the treatment is experimental or investigational, 2) the treatment is not medically necessary, or 3) the treatment is not the standard of care.

In our case, initial denials have most often been because it wasn’t considered medically necessary.2

Show the progression of the situation and how options have been exhausted

I always try to base appeals on the phrases “medical necessity” and “medically necessary.” When you document a surgery or service that you or your family member needs:
Be clear how it is necessary to daily functioning.
Describe what will happen if what you are asking for doesn’t happen.
Be sure to tell what you have tried already, and what has failed.
Show how your diagnosis and treatment history has brought you to this place–how there is no other reasonable option to what you are asking for (or how the alternative is not preferable).
Be complete but don’t ramble.
Be sure to include diagnosis codes and treatment codes (your medical professional will provide these).

Doctors’ offices don’t always have the final say

I should point out that a doctor’s office may tell you that you will have to pay out-of-pocket. They may tell you that they have tried to get your service covered, it was denied and therefore this is the last word. It’s not. For example, my neurologist’s office tried to get my Botox injections covered. Their office appealed the first rejection. They were again denied. They told me that there was “nothing else they could do”; I would have to pay.

Undeterred, I asked for copies of my medical records. I called my insurance company and asked what I needed to do. Despite what the doctor’s office told me, I learned that patients often have a separate appeals process available to them. While physicians’ offices can often get services covered and can be very helpful in knowing what’s been a successful method of appeal in the past, they are not the only way to get services approved. In a case like this there is actually a financial disincentive for them to have insurance cover it; therefore, they may not be as aggressive as you will. What does that mean? If I had paid out of pocket they would have received almost three times the amount of money that they receive when compensated by my insurance company directly.

When the office tried to get the injections covered, the insurance company denied the request on the basis that this was an experimental treatment– not FDA-approved for this use. I provided medical history sheets from my medical file. I documented every drug I had take until that point to try to prevent migraines and the dates I took them. I explained the medical condition/situation that resulted when I had migraines. I told them how the neurologist felt the Botox might help me. I included the original letter he had written to the insurance company. I explained that if they didn’t cover this treatment a more expensive, more medically damaging situation would result– this would mean more claims and more expense for the company. In the case of the migraines I documented how much my “rescue medications” were costing them per month and how a reduction in those would easily pay for the Botox I was asking for. I showed through my history with the numerous failed attempts with other drugs that the situation had not improved and in fact the side effects from those drugs had been debilitating. I also showed the literature about preliminary success in clinical trials with Botox and my neurologist’s observations about its efficacy in others and the potential efficacy in my case. I explained I had no other choice, and while it might be not-yet FDA approved, Botox was actually on the verge of receiving such approval (I was proved right when it did receive approval for this purpose less than one year after my request).

Include all relevant information and send appeal within the required time period

This letter of appeal doesn’t need to be 3 pages long. In fact, even in my most complicated appeals I didn’t write more than a page or two at most (plus the inclusion of the supporting documents). Be sure to appeal/respond within the time frame they dictate. In the letter be sure to include:
your contact information, subscriber number, and the doctor/hospital/treatment facility information
the case reference number that they provide
all relevant diagnosis and procedure codes

Ask doctors and staff for assistance, documents

Do not be afraid to ask your doctor and his/her staff for help: what tactics have they found useful? If there are multiple codes that apply which ones are the best to use? Do they have any sample letters for appealing? What has their experience been with your particular health insurance company?

Use the rejection letter as the foundation for your appeal

Take the rejection letter you received and read it carefully. Don’t just react with “it says no” and throw it away. It is vital; in it, the company must tell you why they are rejecting your claim (usually one of those three reasons I mentioned at the outset). This is the key to your appeal. You must address this issue. They’re telling you the basis, you need to fight based on that. Be thorough but don’t get off track.

Another good example of persistence in appeals came with a corrective band we used for Tristan’s quite-misshapen head (diagnoses of plagiocephaly and brachiocephaly). The facility we used for the DOC band told us that insurance claims were most often denied for this service. Indeed, the first claim was denied; they said the “helmet” to correct his misshapen head was for cosmetic reasons only. I appealed. I explained that because of his neck abnormalities the head deformity was an inevitable result of having his head fixed in one place. Because he was unable to move his head properly he had this inevitable result of a physical abnormality. I ended up having two helmets approved for coverage.3 Had I accepted the facility’s statement that “insurance companies usually don’t pay for this” or my first rejection letter from the company, we would have had to pay in full for both helmets. I should point out that I’ve seen success getting this particular service covered even when the plagiocephaly was not due to a unique condition like Tristan’s when the subscriber persisted with the appeal process.

You can appeal more than just a denied claim

- A facility that isn’t usually in-network may actually be considered in-network for some diagnoses. For example, Memorial Sloan Kettering Hospital in New York City is a hospital that specializes in treatment of cancer. Though it isn’t normally included in coverage by some health plans, insurance companies will often allow oncology treatments there under the Centers of Excellence program. Through this policy, hospitals that specialize in certain conditions are treated as participating centers (in-network). So, if you wish to have medical care at a facility that specializes in a certain medical condition be sure to check whether they are included in this special program.

-Prescription drug plans can be adapted. This is a big one. What do I mean by this? Just because your prescription drug plan says it will only cover a certain number of pills doesnt mean that’s the last word. My prescription drug plan said only 9 pills of my expensive migraine medication would be covered each month. The problem? I frequently needed more than that number. I decided to investigate. I called my insurance company and the administrators of the prescription plan and asked how I could get that number increased because it was medically necessary for me to have more than that number. They said my doctor could call and make a request. He called and they agreed to cover 18 pills. I received a temporary increase to 18 pills a month for one year, renewable each year by going through the same process. That saves me up to $2880 a year.4

-Additionally, numbers of physical therapy/occupational therapy visits can be appealed. Our plan covers 30 PT visits for Tristan per year. He needs significantly more than that number. When the 30 are up, I write and document the medical necessity for him to receive more based on his anatomical defects. I state the skills he is getting with the visits and how they are necessary for his functioning. The physical therapist sometimes needs to include a letter and our pediatrician needs to write a prescription for the services.

Be organized. Take notes. Document everything

No matter what drug, service, surgery, or treatment you are appealing, you must be organized, take notes, and document everything. The key to my system is my medical binder. Have one for each family member. To see how to organize this essential tool, read my blogpost here.
Keep copies of your lab results, operative notes, and copies of all communication to/from your insurance company.
Be sure to have a fully documented medical history.
Save letters that were successful; if you need to repeat an appeal annually (like my migraine drugs and Tristan’s PT visits) then you will have a document that just needs minor tweaking.
Take notes on conversations (including dates and full name of the person you spoke with) at the company or doctor’s office. I learned that tip from my grandfather, a court stenographer for over 50 years: always keep track of the date, time, and name of the person you talked with. It may not be enough to prove your case, but if you can say “I spoke with (first and last name) on (date)” it lends credence to the fact that conversation took place.

Obviously, this post is not a comprehensive list of all types of conditions and how to win appeals for them. I know there are many readers who have had/will have experiences different from my own. I cannot tell you what will work for you; I can only tell you what has worked for me. I hope that by doing so and sharing some of these anecdotes you will learn something that you can apply in your own case. I realized while writing this piece over the past few weeks that there is so much to say about it. I’d like to consider this post an introduction to the topic; I will definitely revisit it again in the future.

  1. every adult should have a comprehensive medical history in their files. This should include info and dates of all hospitalizations, surgeries, diagnoses, medications. Also, you should list all close relatives and their age at time of death/cause of death []
  2. The notable exception was my petition last year to have injections of Botox for my migraine headaches covered. At that time the insurance company initially denied the claim because Botox was not FDA-approved for migraines and was therefore “experiemental.” The FDA has since approved this treatment. []
  3. They paid for 80%, we paid for 20% []
  4. With the Botox injections this number has decreased and I no longer require 18 per month []

The importance of open-ended questions

January 13th, 2011 § 3 comments

There are ways in which I will never make you as readers understand what it’s like to have cancer if you haven’t. However, part of the reason I write this blog is to try to explain some of the cancer patient “mentality” (if you’ll accept such a generalization) to those of you who haven’t had cancer. To that end, you can hopefully be better friends, partners, spouses, sons, and daughters. There are things I didn’t know before I had cancer that I wish I had understood.

It’s not that I am special. It’s not that I am so smart. It’s that I have been there. Hopefully sooner than you have. And so I am reporting back from the field. To try to help you. Prepare you. Because if there is one thing I know, one thing I know for sure: you will know someone. It might be your friend. Your parent. Your child. Or even yourself. Maybe you already know someone. But one thing is for sure: you will know someone who gets cancer. And you know what? You already know me.

One of the ways your life changes when you have had cancer is that you begin to understand the phrase “It’s never over” in a whole new way.

As soon as you hear the three words, “You have cancer” your life changes. From the time you hear those words everything is different. You now have a history of cancer — even if it’s a cancer that can be removed and you don’t need any other treatment. It is now a history that puts you at risk. Now every medical problem, every medical history you give, every question mark, every medical mystery must be filtered through the lens of a history of cancer.

A woman I know from college was writing a brief note to me by email to thank me for something nice I’d done. The last part said, “Hope you’re feeling on top of the world (or close to it).”
My reaction? First I burst out in laughter.
Ah, the naiveté of the healthy!
On top of the world! Ha!
Then it actually got me riled up.
Angry.
How dare she think it was over.
Then I got angry at myself for lashing out.
I became contrite.
Why should she know better?
How could she know better?
It isn’t fair to expect people to know better.
Only once you know better can you do better.
If she only knew.

What was I going to do?
Write back and explain to her the error in her thinking?
Should I write back and say:
I counted every day, every hour, every minute, every second to be “done.” But when each thing was “done” there was always something else I was counting toward. Always something else looming. I’m never “done.” It’s never “done.” It’s never “over.”

The language we use reveals a lot.
When someone says,
“You must be on top of the world,”
that means:
“You should be”
“You ought to be”
or
“I expect you to be.”
For someone like me, if I don’t feel like that it’s hard.
I get angry. I want to say all of the reasons why that’s not realistic– why that’s wrong. Why that’s precisely what I’m not feeling.

But then, when my anger cools, I take that and turn it inward. And all I feel is disappointment. Disappointment in myself. Maybe I should feel like that. Maybe I really should feel on top of the world. The fact that I don’t means I’m not as far through this thing as I thought. It reminds me I’ve still got a lot of work to do.

Maybe the battle is not really with cancer. Maybe it’s with myself.

But I think the point remains: just surviving cancer isn’t necessarily enough. It’s not enough to make you feel on top of the world.

You can help those who have had cancer by not making the leap that just because they have lived through this round that they have “won”; don’t assume that they will necessarily be ecstatic, “done,” and ready to move on.

Rather than telling people what they “must” feel, we all can be better friends and listeners by asking questions rather than making statements.

Rather than saying “you must feel on top of the world” think of the difference it would have made if my friend had said, “Now that your treatment and surgeries are over, how do you feel?”

An open-ended question is always a safe conversation starter. I’m going to try it more often in my everyday life; I hope you will too. My wish is that it begins some good conversations between you and someone you care about.1


  1. This is the 4th installment of a week-long sharing of some of my favorite blogposts over the past few years.
    August 13, 2009 []

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