Documenting the Journey: The Case for Good Recordkeeping

Whether you’re newly diagnosed or choosing a new care team after a long hard road of sharp curves, U-turns and deadends, it is important to keep track of where you’ve been. We recommend you obtain copies of all of your scans, pathology reports and insurance documents and keep a notebook to jot down questions and record answers during your appointments.

Organizing the massive amount of information produced by your cancer diagnosis and care will help you communicate more effectively with your health care providers, especially when consultations are needed or a new doctor joins your team. This requires a fair amount of time, persistence and organization. You might delegate a reliable, trusted family member or friend to help with some or all of this and be your designated recordkeeper, notetaker, scheduler, etc. (See Caregiving and Support for more on sharing the load). There is a lot to remember, and terms are confusing. If you track and record things as you go, you will not miss important information along the way. Here are some record-keeping tips:

1. To capture key information about your disease in one place, find an app or a tool you like, such as NET VITALS from LACNETS.
2. You can use Dropbox, Box, Google Drive, etc., to store and share reports, labs, notes, advance directives and other documents in the cloud.
3. Organize every piece of paper related to your care, for example, by year or by practitioner, and keep these documents in one place.
4. Take the same notebook with you to every appointment so that you can refer to your notes from previous visits.
5. Keep detailed records of all communications with your insurance company, including dates and times, the name, title and contact information of the person you spoke with, and the information you received.
6. Ask for and keep at least one CD of every scan that you get. Many NET patients live for years, even decades, and it is quite possible that earlier scans can be helpful later. Get two copies of scans, if possible, so you can share one with additional providers.

You have a right to all of your records, including copies of your scans. You may have to file some simple paperwork with the medical center’s Office of Patient Records. Some medical centers charge for the images, but if you say the scan images are for “continuing care" or speak to your doctor’s office, the charge may be waived.

Being Ready in Case of an Emergency

It is always advisable to have an “emergency preparedness kit” at the ready. Here are some important items to keep in your kit:

People to reach
Carry emergency contact information, including treating physicians and their contact information.

Emergency bracelets or cards
Wearing an emergency bracelet or keeping an emergency card in your wallet or billfold can alert first responders including police and paramedics to any life-threatening conditions you have, including allergies and risk of carcinoid crisis, in case a medical emergency prevents you from communicating.

Smart devices
Smartphones and smart devices often have a feature that allows you to set up your emergency contacts and add essential information such as medical conditions, allergies, and current medications. This allows first responders to access important medical information from the lock screen, even without your passcode.

“Go kit” or “Go bag”
Pack a casual travel bag with supplies you’d need if you were admitted to the hospital, such as a spare change of clothes, extra medications, a flash drive or other record of your current medical information and history, people to contact in case of emergency, and your advance directives.

Advance Directives

As adults, there are decisions that we all need to think about in the case of sudden impairment due to accidents, or health crises, or serious illness, but these are often neglected until it is too late. Every adult in a family should prepare advance directives.

Advance directives allow you to communicate the type of medical care you want if you become too sick to make your own decisions. Yes, preparing these documents ahead of time is a chore, but think of it as a gift to your family members. Without an advance directive, they might have to decide what is best for you without your input.

Be prepared to be asked if you have these documents when you go in for a surgery or a procedure requiring anesthesia:

• A living will states your wishes should various medical scenarios occur, like stroke or coma.

• A medical power of attorney (sometimes known as a durable power of attorney), appoints someone as your health care proxy or a healthcare representative to make healthcare decisions for you when you are unable to speak for yourself. A proxy can be a family member or trusted individual who will carry out your wishes. Your proxy is also allowed to access your medical records.

You should also let those close to you know where your important papers are stored and what your wishes are for burial, memorial services or celebrations. Conversations surrounding these difficult decisions are sensitive and deeply personal, and there are cancer organizations that provide resources or counseling to help you have these conversations with loved ones.