You have a responsibility to ask questions, and you have every right to get an answer you can understand. The key to asking good questions is to be a well-informed spousal advocate. Obtaining your own research from reliable sources is key to being well-informed.
What to expect
Going to medical appointments can be nerve-wracking because there is often so much you’re trying to find out in a short appointment. And while the doctors are a good source of information, do not rely solely on what they tell you. The doctor has hundreds of patients, and you only have one - your husband or wife! Some may not want to tell you about clinical trials going on at other institutions. Even well-meaning, smart doctors will sometimes miss an important piece of information relevant to your spouse’s treatment.
How to deal
Always remember to trust your instincts. If something you’re being told just doesn’t seem right, get more information.
You might be overwhelmed with all your responsibilities as a young cancer spouse or have trouble weeding through complicated medical jargon. So don’t be afraid to ask a smart, detail-oriented, close friend or family member to help you do research.
To make it easier to get all of your questions answered in the small time allotted with the doctor, print out anything you find that might be important to show the doctor (such as a printout of a clinical trial you think your spouse may qualify for). Highlight anything you think is particularly important or your need an explanation of in layperson’s terms.
Write a list of questions you need answered, leaving space to write the basic gist of the answer below it. With all that you are trying to do, remembering all the questions might be tough.
Using the web
It is important that you choose reliable sources of information written by the medical community.
When reading personal accounts, you must remember that it is only one person’s experience with cancer, which may not be indicative of many other people’s experiences.
Numerous sites present comprehensive medical information, so at YoungCancerSpouses we try to present a number of different experiences free of medical jargon. Several reliable sources that deal with all types of cancer and are not tumor-type specific are listed below. There are other good information sources as well that are not listed here - but these will give you a good start: