After a diagnosis, you might be scared, or numb, or angry, or all of the above and more. And you’re probably overwhelmed.

We can help. These next chapters are a destination map. They can help guide you toward the best decisions along your path from diagnosis through treatment, so that you arrive where you want to be.

American and Stand Up To Cancer are with you in this journey. As you get started, know these four things:

1: Cancer is not your fault

Don’t blame yourself. Don’t let anybody else blame you. “When people get cancer, it’s generally not their fault,” says researcher Lee Helman, MD,Professor, Keck School of Medicine, University of Southern California, and Director, Cancer Research Program, Children’s Hospital of Los Angeles. “The reasons people get cancer are incredibly complicated, a complex interaction between genetics, environment and exposure.”

2: Cancer is not the way it used to be

Today, cancer is often detected earlier, when treatments can be more effective.

3: Everybody is different

Statistics that report average survival times or average cure rates aren’t rules — they are estimates that lump everyone together. Don’t take them too personally.

4: There is something you can do

Karen Taphorn’s cancer journey started with a mole in the small of her back. When traditional chemotherapy no longer worked for her melanoma, and her cancer recurred with more than 24 tumors in her lungs, Karen turned to a clinical trial offering new immunotherapy using “check point inhibitors.” Karen said she would have crawled to Memorial Sloan Kettering to participate in that trial. Now, more than X years later Karen remains healthy with no evidence of disease. Each day, week and year that Karen survives without cancer, she is helping us understand just how long and durable a patient’s response to immunotherapy can be.

Not everybody is so resilient, and that is ok. But anyone can take control of their journey.

Talking to the oncologist

When you first talk to your cancer doctor, it might be hard to take it all in. “Obviously if you’re told you have cancer, it’s overwhelming,” says Helman.

It will be difficult to remember everything so write as much as you can down. Write down what the doctor tells you, and ask him or her to write down the name and the “stage” of cancer (meaning how big it is and how much it has spread).

For future visits, if you are comfortable, take a friend or relative with you to the appointment, as a second set of ears. Before you go, write down your questions, or even send them beforehand if possible. And don’t be afraid to ask, says Helman: “I always tell my patients and families: The only stupid or bad question is the one you don’t ask me.”

The journey through diagnosis and treatment is a journey of knowledge. Decide now how you’re going to collect and organize your information, whether in a journal, a notebook, or in digital form.

Decisions, decisions

Before you begin treatment Helman recommends that you ask your doctor about your options.

Sometimes, there’s really just one logical plan of action. But often, you have choices, and each pathway forward has its pluses and minuses.

Sometimes you need to move ahead quickly, but often you may have a few weeks or even a month to think over or research your options.

If you are a woman of child bearing age when you are diagnosed – talk to your doctor about the potential impact of treatment on your fertility and steps that might be considered to preserve childbearing options before you begin treatment.

Your oncologist can be a great source of practical advice about what to expect from the course of treatment, and how it might affect your quality of life.

Support:

A diagnosis can be intense, even devastating—and overwhelming. Cancer support programs and free counseling can help you get through this phase. See the resources page for details.

Second opinions:

Scientists have learned that cancer comes in hundreds of different subtypes. It’s important to find experts in your particular diagnosis. There’s nothing wrong with asking for a second opinion, says Helman, and that’s especially true if your cancer is unusual or has several options for treatment.

As part of American’s medical plans, including Health Maintenance Organizations (HMO), you can access Advance Medical’s Expert Opinion service, which gathers your medical records and brings together a committee of experts who review your case to provide another perspective. For covered team members and their family members, there’s no charge. Visit on the web or call 855-212-1074

This leg of this journey involves decisions: Where do I find the best doctors? How do I assess my options? Should I join a clinical trial?

This framework is intended to help you think through all these questions.

Where should I be treated?

The general rule: Find people who have experience treating your type of cancer, especially if it’s uncommon. That might mean skipping the local hospital and going further away for treatment, which is something to think about: Is that doable? How will it affect your life?

If you are enrolled in the Core, Standard, High Cost Coverage or PPO 80/90/100 you should also contact your health assistant at Accolade at 833-346-3929 (833-FIND-WAY), who may be able to suggest centers of excellence like MD Anderson and Memorial Sloan Kettering Cancer Centerthat have the highest-quality care.

What are my treatment options?

Ask your doctors and your nurses: 

• Is the therapy you recommend the standard—or if I went somewhere else, would they handle it differently?
• If there is an alternative, what do you think is the advantage of doing it the way you recommend?
• If I do this therapy first, will I have the option of trying another therapy next, if this one doesn’t work?
• If I don’t continue this course of treatment, what would be the next steps?

When you and your doctor talk about treatment, it has to be a discussion. What’s our goal here?

The following list can be a starting point, to think about what matters to you:

• How is this treatment administered? (By injection, pill, radiation therapy?)
• Where do I get treated (In the clinic? At home? Will I need to travel?)
• How long will the treatment last?
• What are the side effects of the treatment you’re recommending?
• How many visits are required?

Clinical trials: what you need to know

Clinical trials are an option all along the way. There are trials for people at diagnosis, for the stages in between, for late-stage cancer and for survivors.

In cancer, most clinical trials test out a new treatment in the hope it will be better than current therapies. Not everybody who joins gets the experimental treatment—but you will always receive the current, approved standard treatment(s).  It’s set up that way so that the researchers can compare one directly against the other. Scientists may think the new treatment might be better, but they don’t know and there are things these researchers need to learn. Is it safe and effective? What’s the right dose and how is it most effective to administer the treatment (IV, or a pill you swallow, etc)?. By joining a clinical trial, you help improve knowledge for everyone.

Interested?

1. Start with your doctor, who might be able to suggest a trial for you.
2. If not, try the free and confidential Stand Up to Cancer clinical trial finder. Search for studies that might need people like you—or call 877-769-4829 and be connected with someone who can guide you through this part of the journey. The National Cancer Institutealso has a finder. If you don’t live near a major medical school or center of excellence, you might need to travel to join a clinical trial.
3. If a trial seems right for you, talk it over with your oncologist. (Sometimes you need a referral.)
4. If he/she agrees, get in touch with the trial center closest to you.
5. You may need to come in for a visit. Clinical trials have inclusion and exclusion criteria. They’re looking for people at a specific stage of disease, with lab results or other measurements within a certain range. They may rule out people with other conditions, previous cancers, or who are taking certain medicines.

Some questions you might ask about the trial:

• What side effects do you anticipate? (There may also be unexpected side effects.)
• How many visits are required, and what kinds of tests will you do?
• How long will it last?
• What costs are covered by my insurance? What out of pocket costs might I be responsible for? Your provider will work with your medical administrator to determine if additional approval is needed to participate.)
• If I join this trial, is it possible that I’ll be excluded from other clinical trials in the future?
• For drug trials: What are the chances I’ll get the experimental drug?
• If the drug works for me, will I be able to keep getting it after the study is over?

Treatment can be physically and emotionally draining but you might gain strength from fighting. There’s nothing wrong with saying, this sucks. It’s a journey.

Find people in your life who you can be honest with about the difficulties, or if you prefer to keep to yourself, that’s ok, too. Through online support groups, you might find people who are going through the same thing. If you prefer meeting in person, ask a social worker involved in your cancer doctor’s practice.Don’t forget about the Optum EAP for free 24 hour telephonic support and assistance finding a local counselor. Control the things you can, and keep making new memories. You might feel sick, but you can still do simple things that make you happy. Stay connected to the things and people you love.