Health Forums Online.

The value of record keeping cannot be overemphasized. Having evidence in writing of your position is indispensable, should disputes or questions arise. You should obtain records for all treatment, employment, and financial circumstances and keep them in some organized way and in a place safe from fire, theft, or flood.
Karen Paries was diagnosed in her thirties with NSCLC. Karen created Lung Cancer Online (http://www.lungcanceronline.org). She describes how frustrating the business side of cancer can be:
One aspect for living with cancer that I find to be an ongoing source for stress is the time and effort involved in managing the logistics for medical care. There is a seemingly endless amount of administrative detail and financial insecurity brought on by the vagaries of a difficult health insurance system.

My husband and I learned to be our own advocates and to not take anything for granted. We always called ahead before appointments to confirm that all tests and paperwork were in order We got copies of every test, every doctor's note, every financial document, and put them into a green notebook that my husband always carried with him. We put copies of scans and x-rays into an artist's portfolio. We often used the green notebook for reference during appointments. In fact, our doctors came to rely on our green notebook for information that had not yet made it into my chart! In the end, the notebook proved to be an effective organizational tool that saved us hours of time and aggravation.

Biopsy samples
A new and very important concern you should address is the permanent storage of your biopsy tissue samples. Because of the development of new treatment technologies, such as monoclonal antibodies and tumor-derived vaccines, your biopsy samples may be needed years after they are removed from your body.
Yet some hospitals limit storage time for such samples because their storage resources are finite. This means that, lacking instructions otherwise, they may discard your tissue samples after a number of years.
Ask the hospital to keep your samples forever. If they are not able to do so, make arrangements to store the samples elsewhere.

Establish a record trail
Simple though it may sound, getting copies of all medical information, including films, and getting written copies of all tangential records related to employment, insurance, and finance are sometimes overlooked. Here are some tips for obtaining records:
• Request and keep copies of all medical records and bills as you go through diagnosis and treatment. This will establish with the doctor's staff your expectations, set a tone of efficiency, and will permit you instant access to material if you need it for second opinions. Having copies made and mailed after the fact can add five or more days, even weeks, to the time you need to collect records.
• If you're requesting records that must in turn be forwarded to another health center, make a copy for yourself before forwarding the material.
• When you're hospitalized, or if your treatments are done in the hospital on an outpatient basis, ask for itemized copies of bills. General or summarized hospital bills can be astonishingly obtuse, and even an itemized bill can be unclear. Most errors in hospital billing are found only by using an itemized bill's relative clarity
• Always address financial, employment, or insurance disputes in writing, and keep a copy of what you've written.
• Keep a detailed phone log of all calls made to insurance companies, mortgage companies, and so on.
• Any decision reached verbally to correct errors should be followed by a written confirmation from the company Ask for this confirmation, and if they won't furnish a written reply, write your own reply, stating, "Based on our phone conversation, it is my understanding that the following will happen," listing what you perceive to be true.
• Keep a calendar of appointments. Do not discard it at the end of the year. Keep it as a permanent part of your medical and financial files.
• If space permits, your calendar can double as a log for phone calls, changes in medications or symptoms, blood results, and so on. Otherwise, school exercise books or blank journals, the kind from which pages cannot easily be torn, may serve well.
• Record outgoing correspondence. Send all correspondence thats even remotely important by certified mail, using the return receipt option. Unlike registered mail, which is logged at each stop in the postal system, certified mail does not travel more slowly than regular mail and isn't much more expensive than regular mail. When the return receipt arrives, staple it to your copy of the correspondence: it is your proof that the mail arrived at its destination. Use fax transmission for speed when needed, but follow up with certified mail. An example of an appropriate use for certified mail is correspondence with an insurance company that requires 30 days' advance notice in order to review and approve treatment plans.
• Have copies of all original endoscopy, CT, or MRI films, or digital imaging made for your own files if at all possible. While copies of the reports that describe and analyze these images are useful, a doctors access to source films or digital images is mandatory for certain kinds of review and decision-making.
• If the original endoscopy, CT, or MRI films are loaned to other doctors for second opinions, follow up to be sure they are returned to the central library or original office. (Digital images, while easily transmitted to other medical facilities, are not as easily lost as films are because the original data generally are kept on the computer that first recorded the data.)
Larry Coffman has accumulated his medical records:
Most physicians will provide you with a copy of your records, although a fee could be charged. This fee is usually the expense of making copies.

I typed a letter to each physician and the hospital that I had dealt with.
I requested a full copy of my records and said that I would be happy to pay the fee, if applicable, when I picked them up. I requested them in order to update and maintain my medical history files at home. I didn't have a problem getting them.

Organizing the record trail
How little or how much you choose to organize will depend in some measure on how well you feel, how much energy you have remaining, and your record-keeping habits in general. Don't be surprised if you find yourself, normally a well-organized person, suddenly without the health or energy to file medical reimbursement forms. Others, though, may find that they become more organized as a coping mechanism.

You may find that record-keeping is a task you can delegate to a family member, friend, or neighbor who would love to help you, but doesn't know quite what to offer. Although you may not care to have someone outside your family making phone calls to correct billing mistakes, having someone sort and file bills and receipts on a weekly basis may help you. Sorting mail into stacks for filing is a task that a child might enjoy; scanning and storing documents on a PC might be something that a computer-literate relative might want to do.

Whatever method suits your current needs, do attempt at the very least to store medical and payment records in some way A minimal technique is to put all records in one place, such as in one or more grocery bags, in case you need access to them in a hurry. If you or your volunteers have the time and energy to do so, you may lean toward a fairly elaborate system of organization that gives you instant access to items by topic, health center, or date.

Summary
There may be the rare person with lung cancer who relishes a payment challenge from stubborn insurance companies or the character-building experience of financial hardship, but most of us facing these issues, along with poor health, may begin to feel overwhelmed.

This chapter attempts to highlight the most important, most potentially damaging of these issues and supplies many references for finding the best and most current information.
Before making irrevocable decisions or expensive purchases, please consider consulting professionals who are familiar with recent changes in the various laws that govern insurance, employment, and finances.