It can be difficult to process information from your healthcare providers after a breast cancer diagnosis. But a little preparation and planning can go a long way.
My father always made sure that I knew that a well-prepared person is a force to be reckoned with. He made sure I knew the importance of appearance, how to conduct myself in hard moments, and how to research a topic thoroughly ahead of time if I knew it was going to be discussed.
But none of those lessons came in handy when I found out I had breast cancer. I instantly went into shock and had no capability whatsoever to listen to or process anything that was said after those few first words.
Since my father also taught me that hindsight is 20/20, I can now look back and think of all the things I would now do if I was faced with that initial appointment again.
Here are a few ways to help you prepare for the many doctor appointments that come along with breast cancer.
The holy grail of all things you need to prepare for cancer-related appointments is a friend or loved one with a notebook who truly wants to see you come out swinging.
When you’re told you have cancer, it can become hard to hear things around you. Think of the teacher from Charlie Brown, muffled and telling you lifesaving instructions that you can no longer hear. That’s what happened to me, and I left that appointment unable to tell you most of what was said or what the plan was moving forward.
What I can tell you is that my husband took comprehensive notes, asked a very high number of questions, and left far more knowledgeable than I did. Having a truly great support person in your corner to help you navigate the tough moments is necessary.
Make sure to discuss any questions you may have with your support person before your doctors’ visits or treatments. Making sure they know your thoughts and fears is important so that they can remember to ask those questions when you start to experience chemo brain or are too tired from the medications needed to save your life.
I often found that I was exhausted, unwell, or having memory issues when it came time to speak with my doctors about side effects or plans. Having my support person to advocate for me when I was having trouble advocating for myself was life-altering.
While having that support person present is necessary, the actual list of written questions for your doctor is just as important. I experienced significant brain fog when I was diagnosed at age 33. I had moments of clarity followed by days of fog where I was unable to properly formulate comprehensive thoughts.
Installing a whiteboard in my kitchen to write down questions or concerns as I had them was an invaluable tool. Some questions may be more specific, like, “What is an onco score?” Some may be broader, such as, “What foods are easier to tolerate during treatment?”
Whatever questions you have, writing them down will ensure that you and your support person discuss them, narrow them down, and then bring them to the table when it’s time to speak with your doctors.
I found that information was the most overwhelming thing for me while fighting breast cancer. Googling can lead to too much information and, more importantly, inaccurate information. I made sure to be as organized as possible when it came to my treatment to reduce anxiety and fear.
For me, that meant having three very specific items on me at all times, which I brought to every single appointment:
Each one of these items is significant in its own way, but together, they will make your life much easier to navigate. Cancer often comes with side effects, and for many, that means seeing other doctors along with your oncologists, such as a cardiologist. Staying organized and having all of your information in one place will make it a lot easier to get other doctors up to speed on your care plan.
Having a daily planner that contains a monthly calendar within it was another effective tool for me. I still carry mine to this day and still find that it helps significantly.
Having one place to have your medication times, appointment dates, treatments, and locations of offices within larger (and confusing) hospitals, will inevitably make your life easier. While carrying that planner, you’re able to make appointments and check your schedule no matter where you are. There are also phone applications, such as “Cozi,” that can do the same thing electronically.
I always carried my planner inside my expanding folio. For those that are unaware, a folio is an accordion-style file folder with many pockets and tabs for labeling.
I chose to label mine as follows:
Keeping each section specific made locating documents and results easier and more time efficient. I also carried a copy of all my medications and current treatment plans in case of emergency, especially since many medications have interactions when taken with other medications or substances.
Keeping an up-to-date list of doses, along with medications, will help when prescribed new medications, when being given lifesaving medications in case of an accident, or to diagnose an issue if an interaction should occur.
“Cancer” can be a shocking word, but it doesn’t have to be debilitating. By planning ahead, staying organized, and holding tightly to a few good people that love you, you can navigate breast cancer in a much easier way.
Leaning on others for support and making sure you’re prepared to ask the tough questions when they need to be asked is all the preparation you need. I guess my father was right after all — a well-prepared person is a force to be reckoned with.
Medically reviewed on February 10, 2023
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