Taboo Topics: How to Talk to Family About Cancer Risk

Families can be a source of comfort and joy…as well as anxiety and complex emotions. Layer in difficult conversation topics like family medical history and pancreatic cancer risk and things can get complicated fast. How DO you start a conversation with a grandparent, aunt, uncle or sibling who may be hesitant or fearful to have these discussions? What's the best way to share information and talk through what options may be available for genetic testing and counseling?

Here, PanCAN Patient Services Senior Director Fatima Zelada-Arenas, MA, answers these questions and more. Ultimately, we want to empower every family with the knowledge to make the right choices for them when it comes to managing risk.

Why is talking about pancreatic cancer risk a taboo topic?

Talking to family members about cancer risk can be uncomfortable. Think about everything a conversation on this topic could bring up: complicated family histories, loved ones who have passed, the anxiety of waiting for test results, the fear of cancer being a possibility, dealing with appointments and so much more. It is difficult to talk about serious illnesses and planning for the worst.

But the truth is that knowledge is power. Talking about your personal and family risk for pancreatic cancer means taking control of your health. Taking action is like a smooth ride in the car: You can see ahead and prepare for the bumps and U-turns. While avoiding the topic or conversation might feel better in the moment, the rollercoaster of anxiety and unexpected turns can feel chaotic. Making a plan and understanding what your options are is an important part of feeling empowered.

Testing for any genetic mutations that could be present in the family means protecting your loved ones too.

How do I bring up the topic of family history and pancreatic cancer risk? Where do I start?

Every family is different. Conversations about risk can start with understanding more about family medical history. A lot of people have that one family member or in-law who seems to know everything about everyone's health. This person can be a great resource if there are gaps in your family medical history you would like to know about.

Also consider where, when and how you discuss pancreatic cancer risk. How does your family connect? Is it a text chain? Bring it up there - maybe others will chime in and ask questions. One-to-one phone calls? Talk to a family member you know and trust. Seek their support and then begin to introduce others to the conversation. Holiday gatherings - like the Thanksgiving dinner table - may be a great opportunity depending on your family dynamics.

I have a relative who is hesitant to talk about family history and cancer risk. What are some ideas to make this conversation easier?

It can be helpful to approach the conversation with curiosity. Ask questions. Try to hear and affirm their point of view. Acknowledge the difficulty in talking about illness. If your family has a history of pancreatic or other types of cancer there may be fear and anxiety driving some of their hesitation. Share honestly about why you're asking questions and looking for more information. Be prepared to talk about ways your family could manage risk, including genetic testing and surveillance programs. Maybe they are reluctant to talk about risk because they don't think there's anything they can do to manage it. And remember to take it slow. It may take time, compassion and patience to move the conversation forward.

I am nervous to talk to my relatives about genetic testing. I am worried they will react poorly when I bring up the topic. What should I do?

Consider creating talking points ahead of the conversation so that you can share information about what genetic testing is and why it's important, especially for families with a history of certain types of cancer or conditions. Maybe find some examples of other families who have managed their risk through being proactive. Above all, listen and ask questions. Fear of the unknown can be paralyzing. It can be helpful to acknowledge that fear. Give yourself some grace as well: Genetic testing is a complicated topic which can be overwhelming, so it may take time to bring your family members along.

What if I want to get genetic testing to understand my risk but other close family members don't want to and don't think that I should?

It can be hard to make a decision that goes against the grain, especially when it's family. Often, complicated relationships and years of history come with the territory. It can be challenging to separate that past from any conversations, especially ones that may bring up difficult emotions. It's okay to acknowledge a family member's choice while still moving forward with the steps you plan to take. Ask questions if that feels helpful and offer resources (PanCAN Patient Services can point you in the right direction!) to help them understand their options. Ultimately, you have every right to make the decision that is best for you.

I have had genetic testing and want to share the results with relatives. I am not sure how to approach this conversation. What are some suggestions?

Introduce the topic and ask if they'd like to know more about your results to inform their own decision-making around cancer risk. It may be helpful to start with why you decided to pursue testing and how you're planning to use the information. Consider getting permission to share contact information for the genetic counselor you worked with and ask if they'd like that information. And always offer PanCAN Patient Services as a resource! Our Case Managers can offer options related to genetic testing and counseling as well as talk through any concerns or hesitations they may have.