Table 2 Sample tailored messages

Knowing my genetic status would not change … my cancer treatment.

Excerpt from video: Another benefit of genetic testing is that it gives us a clearer understanding of your future risk for cancer, so we can plan the right follow-up care and monitoring. After your cancer treatment ends, the goal is to keep you from getting cancer again -- either from the same cancer coming back or a new cancer forming. If we know you have a pathogenic variant, we can use medications, screening tests, and sometimes surgery to help prevent future cancer -- or find it in its earliest stages if it does develop. Finding cancer early, when it’s small and has not spread, offers the best chance of treating it successfully.

If I were found to carry an altered gene, I would feel … Guilty about passing it on

Excerpt from video: All I could think about after I found out my test results was, “What if I passed this on to my kids?: I love my family and would feel terrible if I was the cause of anything bad in their lives. But you know, I was talking with my doctor about my test results and she reminded me that having a variant is not my fault, I was just born this way. And she said something else that really struck me.

She explained how helpful this information would be for my family. At first I didn’t totally understand how me having a pathogenic variant could be a good thing for anyone. But now I get how this information is really useful to share with my family so they can make the best healthcare decisions for themselves. I was actually talking to my daughter the other day and she said she’s planning to see her doctor soon to ask about testing based on my results. I’m so glad I could give my family the information they need to take care of themselves.

Getting genetic testing would cost me too much money.

Written message: Good news – genetic testing is usually less expensive than people think! The cost of testing has dropped a lot in the past several years.

There are two main ways to pay for testing:

Through insurance:

∙ Most insurance plans will cover part or all of the cost if a doctor recommends the test.

∙ Most insurance companies have specific criteria that someone needs to meet based on their personal and family history of cancer.

∙ Insurance may cover one or both types of clinical genetic test (i.e., from a healthcare provider or patient-initiated test).

∙ Before getting tested, ask your clinic or insurance company how much you will have to pay.

Self-pay (out-of-pocket):

∙ Instead of using insurance, some people choose to pay out-of-pocket because they are concerned about discrimination or cost. There are laws to prevent this, but genetic test results could affect long-term care, disability, and life insurance coverage.

∙ If you order a patient-initiated test, check with the company to discuss payment options. They may have different payment plans and options for low-cost testing.

Whether going through insurance or paying out-of-pocket, patients generally do not have to pay more than $250.

I would feel anxious while waiting for my results.

Written message: You’re not alone – in fact, feeling anxious while waiting for genetic test results is very common. The waiting game can be tough but it’s worth it. Whether you get tested through your doctor or order your own test from a company, it typically only takes a few weeks to get the results.

These results give you important information that affects your health for the rest of your life. Genetic test results can help you plan your current and future cancer care, as well as cancer prevention strategies. You can also share the results with your family to help them make informed decisions about their own health.

Genetic test results may be hard to wait for, but they can empower you to take control of your health and help your family at the same time.

Value chosen: good spouse/partner

Readiness on 0–10 scale: low (0–5)

When I started my cancer treatment, I was worried for myself but also for my wife. I didn’t know how I’d be able to handle all these appointments and tests while still being there for her. We’ve been together a long time and I’m proud of the relationship we’ve built. It was scary to feel like this cancer might change that.

I wanted to do everything I could to get healthy and back to normal. So when my oncologist recommended getting genetic testing, I wasn’t really interested. It seemed like one more test to do and I didn’t really see how it would help. But my wife thought it was a good idea for me to get tested. She brought it up a few different times after that too. I could tell it was important to her.

I really value her opinion, so I scheduled a genetic test. Turns out getting tested wasn’t that difficult, and more importantly, the results have been very helpful in planning my treatment and follow-up care. Plus, it’s helped ease some of my wife’s worries. She was right, getting tested has been good thing for my health – and for our relationship.

Value chosen: good spouse/partner

Readiness on 0–10 scale: high (6–10)

I got diagnosed with cancer not long after getting married. We had just finished sending out thank you notes and then, bam, I got the diagnosis – it was a lot of big life changes at one time. In a way, though, it reinforced just how important our relationship is. My husband is a great guy, super supportive and caring. He’s always there for me and came to most of my appointments. But I didn’t want my cancer to take over his life too.

When it came to getting genetic testing, I did some research and it became pretty clear it would be helpful information for me to have. I looked online and found a genetic counselor in my area and set up an appointment to get testing. My husband would never say I’m a burden, but I wanted to be proactive wherever I could to take some of this off his plate. Getting my test results has helped me feel more confident in my treatment plan and I felt good having something more concrete to share with my husband, rather than just uncertainty.

0–3 on 10-point readiness scale

You’re not sure you’re ready for genetic testing. We designed this website with you in mind – explore all the resources you need to feel confident in your decision.

4–6 on 10-point readiness scale

You’re feeling somewhat ready for genetic testing. That’s great! Let’s explore what testing might mean for you and review some helpful resources.

7–9 on 10-point readiness scale

You’re feeling pretty ready for genetic testing. That’s great! Let’s explore the benefits of testing and review some helpful resources.

10 on 10-point readiness scale

You’re ready for genetic testing. That’s great! We’ve got all the information you need to set up a test.