Avoid Confusion

Visiting health care providers can be one of the most unsettling parts of having cancer but there are things you can do to avoid miscommunication and minimize confusion.  Being prepared for these visits can make you more confident and save a lot of time and frustration. 

It may seem as though your health care provider is bombarding you with a lot of information and you may feel your questions are silly or stupid. It is natural to be less able to grasp new concepts now than you would normally be able to. You may find the following tips helpful in reducing confusion and stress.

  • Remember: This may be a team effort but you are the team leader.  You will be talking with a number of doctors and advocates who will make recommendations for your care, but as the patient, the final decision is yours. 
  • Do not be afraid to seek out a second opinion.  Second opinions are not only available but encouraged by most health care providers in the cancer field.  Do not be surprised if you get different opinions from different doctors.  In the San Francisco Bay Area, you can call The Second Opinion at 415-775-9956 to get a free second opinion.  For a directory of multidisciplinary second opinions for anywhere in the country, call the R.A. Bloch Cancer Foundation at 800-433-0464.
  • Keep a three-ring binder to collect all your paperwork. It should include documents with insurance information, laboratory reports, health care provider’s notes, hospital forms, etc.
  • Be responsible for retaining copies of all of your paperwork. It will save time in the future.
  • Get a pocket calendar to keep track of all appointments.  Keep a list of names and phone numbers in it, as you will be most likely seeing more than one health care provider.  This will serve as a handy reference guide to call and verify appointment times.
  • Call ahead on the day of your appointment, to make sure things are running on time.  You can save yourself long waits in the health care provider’s office.
  • Begin a list of questions and keep it in your binder.  A sample list of questions is included in this booklet.  Do not be afraid to ask these or other questions – health care providers are usually very willing to address any concerns you may have. (If your providers are not, find ones that are.) 
  • Locate your insurance policy and familiarize yourself with the details of your coverage.
  • Take insurance cards with you to all appointments.  Everyone involved in the treatment and management of your breast cancer (health care providers, hospitals, pharmacies, and laboratories) will need them.
  • Take along a voice recorder with adequate capacity to record your entire visit, and ask if you can use it.  Health care providers will be presenting unfamiliar concepts and using terms that you may not be familiar with.  The tape recorder will give you a chance to listen later at your own pace.
  • Another set of ears can also prove to be helpful.  Not only will a loved one help with remembering what your health care provider says, but they may also help curb the anxiety associated with the whole process of the health care provider’s visit.
  • You may be under the care of more than one physician during and after treatment.  Make sure all of your health care providers get reports on all provider laboratory visits, x-rays, and tests. Ask your primary care provider to facilitate this, and follow up to be sure that he/she does. Don’t forget to ask for your own copies and keep them in your binder.
  • Try to have your tests done at the same facility for the best comparison in the future.
  • Don’t be afraid to ask for help from your health care provider at any time.  It is okay to call on a Sunday afternoon if you are experiencing pain or have a question. 
  • If possible, leave your children at home or with a friend during your health care appointments, such as labs, x-ray, therapy and health care provider’s visits.  This time is for learning and understanding your diagnosis, and the more attention you give to this experience, the better your health care will be.