It’s been over three years since we received my late husband Robert’s diagnosis of metastatic melanoma. The time has been a blessing and a curse – I cannot change the outcome—but in the years since, I’ve been able to organize my thoughts and experiences in a way that I hope will help others who find themselves in our same position.

Everyone’s experience with cancer is different and unique. But there are commonalities that, when understood, can be used to strengthen our abilities to navigate the system and get the best treatment available to each of us. 

Here are five things I learned as a cancer advocate:

1. There Are Endless Decisions to Make. Making informed decisions is obviously important, but so is the sequence in which the decisions are made. Many of these decisions will be laid out before you but some of them won’t. You will likely not even know that these decisions even exist for you to decide on.
2. All Decisions Are Not Equal. Deciding which specialist to listen to and which trial to take part in can make a huge difference for a person diagnosed with cancer. These decisions need to be weighed more heavily than others, and should be made based on certain criteria. Finding, verifying, and weighing the best available information is of utmost importance, and something that isn’t always easy for patients and their advocates.
3. Timing is Everything. Depending on the severity of a diagnosis, you may find that time is of paramount importance, and many other things will fall by the wayside as your cancer journey dominates your life. While the cancer will progress however it wants, nothing else in this process will move forward unless you move it.
4. Look for Incentives. What drives the decisions being made around you? Your incentives are clear to you, but it’s important to also look for the incentives of doctors, pharmacists, caregivers, researchers, and everyone else you will meet along your journey, in order to ensure that the process is working best for you or your loved one.
5. You are the Advocate. When you or a loved one is diagnosed with cancer, you are not assigned an advocate who has all of the answers. You must use the tools and resources available to you to advocate for yourself. 

Treatment for cancer isn’t always linear. Assembling your team, finding the best hospital, and formulating a plan is a complicated process involving insurance coverage, geographic obstacles, inconvenience, availability, and clinical trials. Add to this the urgency of getting treatment and there is no question that it is a struggle for most. On top of all this, the obligations of daily life never cease.

The mission of my company, 1104Health, and the cheryl app is to strengthen your toolbox. We want to democratize access to cancer specialists, treatment options, and cutting edge clinical trials for cancer patients at their greatest time of need.

For more information, or if you’d like to find out if you’re eligible for current clinical trials for melanoma patients, please sign up here.