Cancer Care Self-Advocacy Tips

I’ve cared for hundreds of patients throughout my medical career. A cancer diagnosis can sometimes draw a defining line between who a patient believed he or she was before cancer, and who he or she is after. Hearing that you have cancer is heavy for most people, and it can take some time to process the diagnosis, let alone decide precisely how to handle it.

Unfortunately, not all patients have as much time as they might like to come to terms with a cancer diagnosis. In some cases, treatment decisions might need to occur right away. It might seem cruel for a doctor to deliver such a hard life blow and then expect a patient to decide rationally and thoughtfully what to do about it. However, people with cancer have the right to determine the plan of action they would like to take. Especially for those who feel robbed of their voice after diagnosis (even if temporarily), these four tips can help cancer patients become strong self-advocates for their care and future treatment plans and decisions.

[Read: Lung Cancer vs. Metastatic Kidney Cancer: What’s the Difference?]

Seek information. Once a cancer diagnosis has been received, it is crucial to seek out factual information about the type of cancer. How does one know what a factual source is? Start with your physician. Ask him or her questions. Once I deliver a cancer diagnosis to a patient, one of my most important jobs is transitioning from provider to listener. Finding a doctor who takes the time to listen to questions and answer them thoroughly is crucial to the treatment journey.

You can also ask your doctor for information sources that he or she recommends. I also advise talking to other people who have received the same diagnosis as you. However, a word of caution here is that cancer treatment plans are often unique and tailored to the individual based on his or her set of unique life circumstances. So, while it’s important to seek comfort within a particular cancer community, I would caution patients from comparing their diagnosis, treatment or outcome against someone else’s.

[Read: How to Treat Pancreatic Cancer.]

Communicate. When someone is told they have cancer, it can sometimes feel as though an internal “mute” button is pressed on the brain, mouth and heart. However, in terms of self-advocacy, this may be one of the biggest and most significant hurdles to overcome when deciding how to move forward. One way to accomplish this is to organize your thoughts before medical appointments by writing them down. Consider what you know about your diagnosis, and aim to obtain any missing information you want to “fill in the blanks” or answer questions that you still need. There can be far fewer questions on day one of a cancer diagnosis than at the next follow-up appointment, so never feel bad for not asking sooner.

Problem-solve. At some point after diagnosis, the need to make treatment choices will arise. Armed with the information you’ve sought on your own and questions answered by your doctor or care team, loved ones can also help talk you through decisions. But it’s important to remember, this is your body and your life. No one can make treatment decisions for you.

Negotiate. I’ve saved this one for last because it can be the toughest. There will be times when the need to have your circumstances considered will require speaking up. Cancer care and treatment involve every aspect of daily living, so how it affects each facet of your life will require consideration and possibly accommodation in some areas. These considerations don’t only include health care topics. As an example, consider what you do for work. A conversation with your employer about how your workload or hours are handled as you seek care will be crucial. And it may require some negotiation.

[See: 10 Innovations in Cancer Therapy. ]

Unfortunately, there is no “manual” regarding how a person is supposed to handle a cancer diagnosis successfully. If you can manage the four tips in this article and give yourself the time you need to develop a reliable voice in order to make decisions that feel right to you, you will get there. I’m rooting for you and wish you restored health and healing on your cancer journey.

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Cancer Care Self-Advocacy Tips originally appeared on usnews.com

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