Navigating complicated conversations: A guide for cancer patients

Dealing with a cancer diagnosis is an emotionally charged experience, marked by important conversations with medical professionals and loved ones. Effective communication can ensure that you receive the support and care you need. In this blog, we'll provide practical advice on handling various discussions, from disclosing your diagnosis and addressing end-of-life considerations to transitioning into survivorship.

Disclosing Your Diagnosis to Loved Ones

Choosing the Right Time and Place

Finding the right environment for disclosing your diagnosis is crucial. The ideal location for critical conversations is a private, comfortable setting with minimal distractions. This ensures that both you and your loved one can focus on the conversation at hand.

Preparing for the Conversation

Before you speak with your loved ones, take some time to gather your thoughts and emotions. Anticipate potential questions or concerns they might have, allowing you to address them thoughtfully and comprehensively. You may even want to write down potential responses to these questions, so that you feel prepared for your conversation.

Having your primary caregiver present for the conversation can be helpful too. They can support you through difficult moments and help answer questions. They can also be in charge of addressing coordination of care, including how your loved ones can best support you (rides to appointments, sending a meal, etc.), so you can focus on the basics of your diagnosis and treatment.

Delivering the News

When it's time to share your diagnosis, do so with compassion and clarity. Acknowledge the emotional weight of the news, and provide reassurance that you're taking steps towards treatment and support. Know that it is okay (and common) for loved ones to experience intense emotions during these types of conversations.

It’s also common to feel mentally and emotionally drained after telling someone you have cancer. Schedule this with enough time for you to rest and reflect afterwards. You may even want to schedule something to look forward to afterwards, such as watching your favorite movie or getting your favorite meal.

Communicating with Medical Teams

Building a Strong Patient-Doctor Relationship

In order to forge a strong bond with your healthcare providers, trust and open communication are essential. Be proactive in advocating for your own needs and preferences, and ensure you're an active participant in your care plan. 

Asking Questions and Seeking Clarification

Before your first appointment and in between appointments, keep a list of questions for your providers. (You can use a notes app on your phone or a pen and paper). This ensures you don’t forget your questions at the appointment and that you can write/remember the answers long after meeting with your medical team.

Questions can include seeking clarity on treatment options, potential side effects, your prognosis, and options about mental and physical wellness during treatment, as well as anything else that pops up as you navigate day-to-day life. Being well-informed empowers you to make decisions aligned with your values and priorities.

Expressing Concerns or Disagreements

It is common to have doubts or feel the need for a second opinion, and it’s encouraged to communicate this in a respectful manner to your medical teams (which includes your nurses, nurse navigators and/or social workers). They should be receptive to your concerns and work with you to find the best path forward.

You can find another St. David’s HealthCare blog that focuses on questions to ask your providers here.

Seeking Support and Asking for Help

Identifying Your Support System

Recognize who can provide emotional and practical support during this journey, and be open to the idea that these may not be the same people who supported you before your cancer diagnosis. Cancer can create all sorts of mixed emotions, and some people may not know how to be there for you the way you need them to be. The good news is that there are so many others who will! They may already be in your life, or you may find them in a support group, online forum or church community.

Be proactive in finding people who can support you and cultivate open lines of communication within your support network, ensuring everyone is on the same page. A great idea — which takes the mental load off of you — is to have your caregiver be the main communicator for any practical needs you may have.

Articulating Your Needs

When communicating, be specific about how others can assist you, whether it’s helping with daily tasks, accompanying you to appointments or simply lending an empathetic ear. Letting others know what you need is vital.

Be very specific in your requests. (For example, “I need someone to drop off/order dinner for us between 5 and 7 p.m. the next four Thursdays after treatment.) This allows your loved ones to ensure they can commit to that support and that it works within their schedule.

Give your loved one’s options for support so they can play to their own personal strengths. For example, you can offer specific times you’d want someone to accompany you to treatment, give them the option to be a supportive listener, or allow them to walk your dogs or mow the lawn. Some people may not have time in their schedule to take you to an appointment, but would love to be a supportive listener. Others may feel uncomfortable supporting you emotionally, but would love to help around the house.

You can find another St. David’s HealthCare blog that addresses communicating your needs and creating a communication plan here.

Addressing End-of-Life Conversations

Initiating Discussions about End-of-Life Care

Approaching end-of-life discussions requires great sensitivity. As with every stage of your treatment, be proactive in reflecting on what you want during this stage, and involve your healthcare providers in these conversations. They can provide guidance and help you make decisions aligned with your wishes.

Documenting Your Wishes

Advance directives, living wills and healthcare proxies are essential documents. Discuss them openly with your family, ensuring that everyone understands your wishes and can advocate for you if necessary.

A wonderful resource to help with end-of-life conversations is The Conversation Project. The Conversation Project is an initiative of the Institute for Healthcare Improvement (IHI) that provides easy-to-read guides to help you identify what matters most to you, as well as initiate those conversations with your medical teams and loves ones.

Transitioning into Survivorship

Communicating Post-Treatment Needs

Know that it is common to feel anxious as you transition away from seeing your medical teams frequently. As such, be sure to discuss any potential long-term effects of treatment and ongoing care plans with your healthcare team. Additionally, inquire about the best way to communicate with them between appointments. Keeping an open line of communication ensures that you receive the appropriate care and support moving forward.

Celebrating Milestones and Finding Your People

As you transition into survivorship, take time to celebrate your victories, no matter how small they may seem. It could be graduating from your clinic, the anniversary of the day you were diagnosed or the little day-to-day victories in post-treatment life.

As with every stage, find other survivors who “get it” and can share your anxieties and celebratory moments with you. You may want to participate in local fundraisers or awareness campaigns, give back to newly diagnosed patients or simply move on from cancer altogether.

Effective communication is your greatest ally during every step of your cancer journey. Approach these conversations with courage, compassion and confidence. Remember, you are not alone; your medical team and loved ones are here to support you every step of the way.

 

Katie Ozuna, LMSW, OSW-C, OPN-CG

St. David’s HealthCare, Oncology Mental Health Counselor