As an Oncology Nurse for more than 40 years, and a Cancer Center Director for more than a decade, I frequently observed the shell-shocked expression on the faces of newly-diagnosed patients and their loved ones when first hearing the words: ‘You have cancer.’
Then one day, this sense of profound disorientation became personal to me when my husband Barry was told he had prostate cancer. Over time, I observed that the more informed you become about your medical situation (after the shock subsides), the better decisions you are able to make for your unique circumstance.
When my husband embarked on his prostate cancer journey in 2008, I had to make the shift from a confident medical professional to anxious ‘spouse of someone with cancer’. He has had 12 disease-free years and we expect that to continue. But we will never forget the first time he was told those three fateful words.
Here are a few important basics about interfacing with the medical world when you are a patient:
- Bring someone with you to as many appointments as you can, especially early on in the process. Another set of ears always helps. Remember, you are learning a foreign language unique to the cancer world. So many acronyms and words will be used that are unfamiliar. Always ask for clarification if you do not understand.
- Write down questions ahead of time and bring them to your appointments. With all the stress of this new reality, it’s easy to forget that one important question you wanted to ask. Inquire whether you can record the visit so you and your loved ones can review it later. Most doctors will not object. If you can’t think of specific questions to ask, consult these helpful lists provided by the American Cancer Society and the American Society of Clinical Oncology.
- Explore the possibility of a second opinion, if that interests you. Most doctors’ offices will assist in making the referral and help you determine where to go. Also, ask about whether a clinical trial or research study, is right for your situation.
- As hard as it might be, try not to consult the Internet about your condition (at least initially). Online sources have often not been vetted and they are not necessarily appropriate for your particular situation. Likewise, it’s best not to heed medical advice or information you get from well-meaning friends and family. Place your trust in your oncology team, and if you don’t feel confident in them, find another provider.
- Try not to panic. Fear can cloud your thinking. Things often seem much worse and more fraught at first than they turn out to be. Give yourself time to get the information you need and evaluate possible treatments. Take it a step at a time.
You are entering into a lifelong partnership with your oncologist. It will be one of the most important relationships you will ever have. If it is not working for you, talk with a medical team member about it. If you are not comfortable talking with your doctor about communication problems, discussing your concerns with a trusted nurse can often help pave the way to a better relationship.