Now What? Must-Do Steps After a Diagnosis

“I have cancer, what should I do now?”

1. Take a pen and paper to every doctor’s appointment from here on out for note taking. As questions come up through your own research between appointments, write those down and take your list of questions to your appointments.
2. Write down the name of your diagnosis or possible diagnosis, being sure to get the correct spelling from your doctor. Think of this as a preliminary diagnosis and a starting off point for your further investigation. Don’t think of it as your final answer.
3. Consider posting what’s going on using a site such as Caring Bridge. Sites like this allow you to quickly and easily share details and updates of what you are going through with those who care about you. You can password protect it if you desire. You can give the link to the site to any friends, loved ones, or even co-workers via social media, text message, email, or phone call. This allows you to share updates and requests all in one central place with those who care about you. Updating those who care about you can be a full-time job if you try to do this individually.
4. Make a copy of your insurance card(s) front and back. Keep this available and take to all your appointments.
5. Create a summary / timeline document that will include your primary diagnosis (which may change or become more specific multiple times), the date, location, and name of every procedure, surgery, and test you have done. Add a list of all medications, vitamins, and supplements you are on with frequency and dose for each. Finally, add a list of all doctors/healthcare providers you consult with or are treated by, including their contact information. This document is a work in progress which you will constantly be updating and adding to. In combination with the step above (insurance cards) and the step below (medical records), it will have everything a future doctor or healthcare provider wants and needs to see. This is particularly useful when soliciting second opinions. Click here for a template you can use modeled after my own.
6. Start a file for your medical records (hardcopy, digital or a combination), and become an obsessed collector of your medical records. Records you should gather include copies of all test results, such as lab tests, pathology, and imaging (for imaging, ask the imaging center for a copy of the imaging itself on a CD so that you will have a copy, as well as a written copy of the related written report).
7. Gather more opinions from top institutions and doctors on your 1) diagnosis and 2) treatment options and recommendations. This is why you need the summary and medical record file above—to share with other experts. You might have to travel to obtain opinions or ask if expert physicians are willing to give you their opinion remotely by reviewing your summary and medical records, which you can send to them for review. This can often save time and money (compared with traveling to them if they aren’t in the same city). Finding the top institutions and doctors takes research on your part, but it is well worth it to get a complete and accurate idea of your diagnosis and treatment options. If you aren’t sure where to turn for second opinions, consider National Cancer Institute (NCI)-designated cancer centers. Click here for a list of them. While you’re waiting for these appointments and/or opinions, proceed on to the next steps.
8. Research the specific disease/diagnosis each time your diagnosis changes or gets more specific. Learn everything about it. Become an expert. Write down and then ask questions. Own this. You are your own best advocate and are best positioned to know your body and your specific disease/diagnosis better than anyone else. I recommend learning about the recommended (“SOC” or Standard-of-Care) treatment (and options) for your diagnosis or possible diagnosis by checking the NCCN guidelines, which are updated continually based on recent studies and expert consensus. You need to register online for FREE to access them. They give an excellent overview of the generally accepted treatment recommendations and will help you be an informed patient with good fodder for discussion with your treatment team.
9. Research clinical trial options. Here are some steps and information on finding possible clinical trials. Depending on your diagnosis and situation, a clinical trial could be of benefit to you by giving you access to leading edge treatment not yet otherwise available to you. Additionally, clinical trials are the vehicle by which evidence is gathered to help future patients like yourself. In any case, researching clinical trials can help you become familiar with new treatments being investigated and where those investigations are happening. Seeing which institutions, researchers, and physicians are investigating the newest treatments also offers clues on where some of the experts are for your disease, in case you want to seek consultation (second opinions) or treatment with them.
10. With all the information from the previous steps, make decisions on who you will have as your (initial) treatment team and what your initial treatments will be. This will evolve over the course of your journey. Always remember that you are the CEO and captain of your cancer journey. The experts you consult with are resources you should draw upon to help you make the best decisions possible. Don’t let their superior medical knowledge intimidate you into thinking they are in charge of your journey or letting you off the hook in taking an active role in your treatment and treatment decisions. YOU are in charge and they are there to help you navigate and make decisions that are best for you. Don’t let any one doctor or provider dictate what you do. This is your body and your life. Except for emergency situations, you have time to make informed decisions on your provider(s) and treatment(s). Take the time to make the best decision possible. This is infinitely more important than other decisions or purchases you’ve made: car, house, college, spouse, child’s names… Put in the effort to get it right!