We were so happy that Dr Anne Becker-Schutte was able to join twenty-three participants for this robust conversation about Talking to Family and Friends about Cancer and Cancer Risk. You may find the transcript here and the analytics here.
Here is a summary of the responses to our topic questions.
T1: After a diagnosis, telling family and friends can be overwhelming. What are some considerations for deciding what information to share, with whom to share it, and when? What are some tips for those early discussions?
- I recommend that, whenever possible, a patient facing a new cancer diagnosis have at least one trusted person with them at the first appointment, so they have extra ears & a note-taker.
- After you take a moment to breathe and digest the information, I encourage direct communication (phone, video, in person) with your most important support people.
- If you are a person who processes well in writing, make some notes and consider using a tool like a social media group or CaringBridge page to distribute general information to a larger group (if you have someone who can be in charge of that job, that can be great).
- And with kids, you know them best. Most kids will ask for more information if they can handle more. But don’t try to hide it—kids are perceptive.
- It is likely that you will have some shock. Ideally, you will have at least one key support person who can help you hold space and sort out the “who needs to know what” logistics. If not, there are always professional helpers.
- Ultimately, it is your decision to share how little or as much as you would like. People generally mean well but may not know how to process the unexpected nature of a cancer diagnosis. It is important to know it's your story to share & no one can take that from you.
- A1: follow your heart. Let people know what you are comfortable talking about. Talk with your partner about what you are willing to let others do for you
T2: What are some ways to handle the variety of responses and reactions when sharing about one's cancer diagnosis, treatments, and/or experiences?
- Everyone processes things differently. It's easy to take things personally, however, their response may have nothing to do w/you. If you find it too difficult w/certain people, limit your interactions/information shared. Talk to a therapist to help with processing too.
- A sad reality is that some who were very close will react by pulling away from the diagnosed person. This is so hard, but know that this is common and others will often step in and surprise you.
- I often talk with clients who are struggling with the reactions of others. Some folks pull away. Some folks say insensitive things. Some folks appear to expect you to solve their discomfort over your diagnosis.
- I second the suggestion to remember that others are responding to their own issues, even if it feels like responding to you. During diagnosis and treatment, you need to center your energy on your health and your family.
- I love that card about "When life gives you lemons, I will not tell you about my friend that died of lemons". Others often don't know what to say and go in weird and hurtful directions.
- T2 sometimes it’s easier to talk to strangers in a support group who are going thru or have gone thru your journey
- Yes! A well-run support group (or a space like #gyncsm) can be a huge support because you have that shared experience.
- A2: I had to be very clear about my main agenda in contacting family members. It wasn’t for support or validation. I’d just tested + for BRCA2 and getting word out to fam was my overriding concern.
T3: What advice would you offer to friends and family when talking to their loved one about cancer? What have you found MOST helpful? What tends to be NOT helpful at all?
- The first thing I encourage family and friends to do is to avoid trying to say the exact right thing.
- In fact, I think that one of the most connecting, caring things you can say if someone shares a diagnosis is, “I am so sorry to hear that. I don’t know exactly what to say, but I want you to know that I am here.”
- I also encourage folks to offer a specific type of help. “I will come over on Tuesdays to take the kids to the park. I will walk your dog. I will be there Thursday to run some laundry.” Asking a person who is in treatment what they need can actually create a burden.
- Another suggestion I offer to friends and family is to just say, “Tell me if you need me to be cheerful or to just be with you and share the sadness together.” No feeling needs to be solved. Feelings just need acknowledgment & space.
- A3: I sometimes point friends and family members to the “ring theory” of responding to tough situations: Comfort in (towards the person who is ill). Dump (your fear, etc) out—to the rest of your support network.
- I feel something like "I don't know what to say. This is hard." can go a long way vs. trying to say the perfect thing and making it worse and/or not saying anything because so worried.
- T3 listen. Ask if you can do errands or chores. Drive to treatment. Wash their hair!
- Support is everything. Please don't listen to respond. Listen to listen and provide advice only when asked. Most of us just need someone to hear us. If you are unable to support us, encourage support groups either virtually or at a local infusion center.
- Love the asking what they are looking for. Sometimes want to talk cancer. Sometimes want to talk anything but cancer.
- t3: Show Up.
- T3 NOT helpful. "So do you trust what the doctor is telling you? "or " So what caused the cancer?" ( heck if I knew that I'd get the Nobel Prize.) " Oh that's a bad one my Aunt... Sister..., Neighbor had that ."
- Listen to listen, not to respond.
T4: Many of us struggle with how to ask for and accept help and support. How can we best communicate what we need to friends and family when feeling overwhelmed?
- For some of my clients, it helps to have a list of the stuff that needs to be done (housework, kids, doctor visits), and allow people who offer help to just choose from the list.
- I also remind patients that friends and family members can’t take away the cancer, but often are desperate to do something. Offering a concrete need is actually helping the helper.
- And sometimes we all need the reminder that accepting help is not a failure. It is part of the human experience. I suspect my aunt may have lived longer if she had been able to rest and accept help.
- A4: The best advice: keep a journal. Write down anything & everything. If you want to talk to someone, ask for a referral from your provider's office. Sometimes you don't know you need help until you're in the process. Remember, healing is not linear.
- When people w cancer seek & receive help from others, they often find it easier to cope. When you accept help from your loved ones you are allowing them to feel connected to you during a time that they really need to express how much they care about you
- Those who care about you won’t know how to best support you & may say “let me know how I can help”. This is a great opportunity to tell them in specific way what they can do to be helpful. It’s important for you and it’s important for them to allow this to happen
- This is so hard to do when you are tired, overwhelmed, brainfogged. It’s good to make a list, like in Google docs or something, and share it
T5: For genetic testing, what are some considerations when it comes to sharing the results with family? Are there resources for how to reach out and for handling their reactions and questions?
- A5: My first consideration would be to think
about what I hope others would share with me. I want to know if I have
elevated genetic risk. It’s why I pay attention to my cardiac health.
- My aunt called me and then sent a follow-up email with information from her genetic counselor. It was good to have things to look at and research when I was ready after that initial conversation.
- genetic testing results have implications for you & your medical care, but also the cancer risk & medical recommendations for relatives ... #HereditaryCancer
- Every family dynamic is different, so what works in one family might not in another - across the board, we recommend that genetic test results are shared with family members, especially if a gene mutation is detected, as relatives may have inherited higher cancer risks
- Some families will share genetic test results w/ relatives at gatherings (holidays/reunions), some have phone calls, send information to relatives by letter, or invite relatives to join them in a genetic counseling visit #gyncsm Getting the info out is a huge & important 1st step
- Resources to help w/ sharing genetic test results are available through orgs like @FacingOurRisk & others. A genetic counselor can also help you think though different strategies & answer questions that you may get from relatives.@GeneticCouns has info & how to find a GC
- T5 I made sure to ask first before I shared my results with close family members. Some relatives didn’t want to talk about it. When they were ready we did have the discussion.
- Organizations like @FacingOurRisk @CancerDotNet @GeneticCouns have resources for sharing genetic results with relatives.
- T5. I felt it was so important to share with my family. My doctor helped me with the info to share
- T5 One other issue that a lot of us faced with genetic testing was being told by family and others that it’s “so good you couldn’t have kids to pass that on.” Goes along with the it’s less sad when we die without kids
- I discussed outreach strategy with my genetic counselor and a peer navigator at FORCE. I knew that, for myself, receiving a form letter about my genetic test results would have turned me off. I would prefer a more personal, one-on-one approach, so that’s what I used
T6: What are some tips and resources for guiding end of life discussions and planning with friends and family?
- I like encouraging folks to explore tools like National Healthcare Decision Day or the toolkit at the Center for Practical Bioethics to begin thinking about how to have these conversations.
- I remind my clients that their discussions and decisions are ultimately their own. These can be guided by family values, religious/spiritual values, etc. but should ultimately reflect your values.
- When I worked as a hospital social worker, we shared resources like Death With Dignity: https://deathwithdignity.org/learn/end-of-life-resources/
- They are tough conversations, which is why I have advocated for folks to have these conversations with loved ones long before there is any diagnosis. It’s a regular discussion at my house.
- I also remind clients that making clear plans about your desired end of life healthcare decisions, burial/cremation arrangements, ceremony or celebration is a gift to those left behind. (Also, having a central location for key paperwork).
- It can start when making out an advanced directive and health proxy. Be honest with loved ones about our wishes. As family members, we have to be willing to listen to what our loved one wishes and not place our ideas on how they should be coping.
- 1/3: talking about end of life can be difficult but having open and honest communication with your family will create emotional connection at a time when it is needed most. It is natural to want to protect your loved one and yourself
- 2/3: Some people may feel that talking about end of life communicates giving up. In fact, most couples report that sharing their deepest concerns, especially about end of life, brings them closer together and helps them feel less fear
- 3/3: It is hard to hide fears related to EOL. Not sharing your thoughts may only add to their concerns & sense of being alone. Being deeply honest w them shows courage & commitment & gives them the opportunity to talk w you in a way that may not possible w anyone else
We look forward to you joining us at the next #gyncsm chat on Wednesday, December 8th at 8pmET when we’ll discuss "Surviving Holiday Stress".
Wishing all a very Happy Thanksgiving. We are thankful for our moderators, supporters, and all participants. "Thanksgiving is also National Family Health History Day... Speaking of sharing and taking with relatives! #gyncsm" E. Bodnar
Dee
Resources
Her Cancer Diaries https://www.uchealth.org/today/cancer-diaries-novel-way-of-sharing-journey/
Death with Dignity https://deathwithdignity.org/learn/end-of-life-resources/
