Sharing a breast cancer diagnosis with parents

LBBC board member Dana Donofree — founder of AnaOno, a line of lingerie for breast cancer survivors — asked AnaOno team member and LBBC Young Advocate Dani Bennov about sharing her diagnosis with her family, navigating treatment with them by her side, and learning how to set healthy boundaries.

Dani was diagnosed with stage II, triple-positive breast cancer a few days after her 25th birthday. Later, the cancer was diagnosed stage III because it spread to some lymph nodes.

Dani: After I got the call about my diagnosis, I was literally speechless and felt like I had been punched in the stomach. I didn’t have it in me to call my parents and tell them. Luckily, the breast surgeon who did the biopsy and diagnosed the cancer was a colleague of my mother. I asked [the breast surgeon] to call my mom and tell her right after she got off the phone with me. I’m glad she was a colleague of my mom and could call her personally and tell her, because by the time I called, my family already knew.

Both my mom and dad are healthcare providers, which made for an interesting experience in both sharing the news of my diagnosis and going through surgery and treatment.

Dani: I was very lucky to have parents who were able to understand, digest, and unpack the medical information and doctors’ appointments into something I, a non-medical person, could understand and process. Their extensive medical knowledge worked in our favor and against it, because they knew too much about my diagnosis, and therefore knew just how bad things could get for me. Because they know so much, they also tend to jump to the worst-case scenario, which can be really scary for me.

I am very privileged and lucky that their connections and reputations within the medical field allowed me to get timely appointments and consults with difficult-to-see doctors. And, while I am extremely grateful to have the access I do to the doctors my parents have connected me with, and never forget how privileged and lucky I am, it can be emotionally difficult at times to have doctors as parents. Unfortunately, they don't know when to just be my parents, because they can’t leave their medical mindset. There were a lot of times where I would find myself saying, “You are my parents and not my medical team. Let my medical team be my medical team, I just need you to be my parents right now.”

Dana: How did your family support you and what could they have done better?

Dani: Although I am pretty independent and wanted to do a lot of things myself, my parents always offered to go to appointments with me. My mom came by every day after my surgeries, which was so helpful. I am also lucky they live just 45 minutes away, and I loved having them nearby when I needed them.

Being independent and having space to breathe throughout my diagnosis and treatment was really important for me. You lose a lot of control during a cancer diagnosis, so having my personal space and boundaries respected was extremely important to me. Unfortunately, my parents struggled to understand that and overwhelmed me a lot. I wish they would have respected my boundaries, and given me more space when I asked for it.

Dana: In what ways did you need support during your treatments and surgeries?

Dani: More than anything, I just needed someone to vent and complain to about all the crappy stuff that was happening to me throughout my diagnosis, surgery, and treatment. My sister was the best for that. She was also the level-headed, empathetic peacemaker between me and my parents, which was so helpful and supportive.

Dana: Was the experience of going through your diagnosis with your family more, or less, emotional for you than you thought it would be?

Dani: To be honest, it was way more intense than I thought it would be. There was a lot of crying, a lot of yelling, and a lot of breakdowns. I was never left alone, which was a gift because I was taken care of in the times I really needed it. But it was also a curse, because my boundaries were not respected. It has been an emotional year-and-a-half since my initial diagnosis, but going through all of this with my family has taught me how to set healthy boundaries, and has taught my family how to better respect the boundaries I set.

Dana: What advice would you give to other people’s families on how to best support them?

Dani: Listen and understand. Give them space when they ask for it. Don’t force your company and care in times where they want to be left alone. Respect their need for independence and autonomy. (Remember: just because they’re sick doesn’t mean they can’t be independent anymore!)

It’s hard to have a loved one suffer, but please understand that it is them suffering most. More than anything, try not to make the situation about you. This is a time for the sick person to be selfish, and for the family to step back and let them focus on themselves, because chances are they don’t have the mental or emotional energy for anything else. Be parents. Be family. Just be there!

Dana: What advice do you have for setting (medical and personal) boundaries with family members?

Dani: Make sure to actively vocalize what your emotional triggers are. Be firm in what words and actions are OK for your emotional and mental health. If possible, have a sit-down discussion with your family to share what these are, in as calm a way as possible. My family would often try to “call my bluff” or push the boundaries I set, so if this happens, make sure to stand your ground and make yourself known and heard.

Helpful DO’s and DON’TS for Family Members

It can be tricky to navigate conversations with your loved ones. Here are a few things to say (and not say) to a family member or loved one in your life who dealing with a cancer diagnosis.

1. DO ask about their emotional and mental health.

You don’t have to be super specific when asking how they’re doing. Simply asking, “how’s your heart?” can open up a conversation into how they are doing emotionally with their circumstances.

2. DO speak from your heart — but DON’T project your own fear, troubles, and anxieties.

Like Dani said, “It’s hard to have a loved one suffer, but please understand that it is them suffering most. More than anything, try not to make the situation about you.” To avoid projecting onto them and saying the wrong thing, try: “I’m not sure what to say, but I want you to know I care and I’m here for you.”

4. DON’T talk about other people you know who’ve had cancer.

It is good practice to avoid making comparisons and generalizations about other people you’ve known who’ve had cancer. Sharing the negative outcomes of other people can be scary and emotionally triggering for your loved one. Empty reassurance can be triggering as well. Just remember: no two diagnoses, surgeries, or experiences are the same.

5. DON’T give unsolicited advice.

Unless you are her actual doctor, don’t tell your loved one what to do. Allow the medical team they’ve chosen to do what they do best and administer care and advice. The best thing you can do is listen to your loved one, and help them through whatever they ask of you during the process.

6. DO empathize with their situation — but don’t project pity.

Keep an open heart and open mind to what they are going through, but do your best to treat them as the person you’ve always known and loved at the same time. Ultimately, all you need to do is be there for them. If you don’t know what to do or say, simply let them know: “I love you. I’m sorry you are going through this, and I’m here when and if you’re ready to talk, vent, yell, or cry. Just let me know the time and place, and I’ll be there.”