6 Things My Friends with Metastatic Breast Cancer Wish Others Understood

Metastatic breast cancer can be a nerve-wracking diagnosis. For these four women, feeling understood, supported, and validated is essential.

Some friends bring far more to the table than everyday skills and interests. I learn something new every time I’m in the presence of Skye, Hayley, Cara, and Nikki.

I met Skye long ago when our children were in martial arts class together. Our friendship pivoted from casual to deep once we were both diagnosed with breast cancer. Hayley came to us after she was shaken by a de novo stage 4 diagnosis. Cara arrived during treatment for stage 2 breast cancer. Hayley then introduced us to Nikki, who lives on the East Coast and is a digital face. All four live with metastatic breast cancer (MBC) — Skye for 5 years, Hayley for 7 years, Cara for 6 months, and Nikki for 5 years.

My friends are a quartet of vulnerability and wisdom. And they wish to be understood.

I asked each of my friends what they wish other people understood about their diagnosis. This is what they said.

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1. MBC is terminal

Nikki: Yes, we are all going to die. But I have a higher probability of knowing what will kill me. There is an actual ticking clock saying, “Maybe next year? Maybe a couple of years? Maybe science will give you more years?”

Cara: You have this thing inside you that’s going to kill you.

Hayley: You can look perfectly healthy and still have MBC. People live with this disease, walk around the grocery store, look completely normal, and you’d never know. But it’s still terminal.

Skye: When the drugs stop working, I’ll have a few months to live, then I will die.

2. Treatments and their side effects are forever

Skye: Many have asked, “When are you done with treatment?” They’re shocked to learn it’s for the rest of my life. My current treatment isn’t pleasant, but the next one will be really bad. It’s nerve-wracking. That’s the question: Is it worth it? For you and those around you?

Hayley: I will forever be on medications and experiencing side effects. Infusions every 3 weeks, heart scans, PET scans. The meds get harder as your cancer progresses. Then you ask: How long do I want to live? What’s my quality of life? I don’t want to be a burden.

Nikki: If I could control my body, I’d still be running and not in constant pain. It’d be awesome.

Cara: Every day I take ondansetron (Zofran) after my PARP inhibitor for my nausea. But Zofran causes constipation and headaches, so I take Tylenol and Miralax. I also take anti-anxiety meds. I want fewer meds.

3. Grief and fear are always present

Nikki: MBC is the “sword of Damocles” hanging over my head, held up by a string, waiting to fall. And it’s only going to take one tiny thing. And we all know it’s going to fall.

Skye: There’s fear in the back of my head questioning, “When will this turn? When will I become worse?” I can’t live the life I had before. I can’t lift heavy objects. I can’t run because the drugs took away my reflexes. With all the breast cancer in my brain, balance is an issue. I had to get a cane. I’m worried and scared.

Hayley: This disease has a lot of bad that sucks you in. MBC used to be in the front of my brain every day. Now sometimes I don’t think about it for a week. I never thought I’d make it a day without thinking about MBC.

Cara: It’s just tough. I’m still processing it. I don’t know my next step.

4. Time is measured and cherished

Skye: They told me 3 to 5 years, so my first goal was to make it until both kids graduated high school. They’ve graduated. Now the next goal is to make it until they graduate college.

Hayley: I had a 24% chance of living 5 years. My girls were 6 and 3. I hit that first goal. The next statistic is 10% at 10 years. If I can make that, how old will my kids be? If I can just get these girls raised and out into the world, that’s all this mama wants.

Nikki: I don’t focus on bucket lists or checklists. I don’t want my children to think doing something is more important than them. All we ever want is more time. And if I had more time, I’m choosing my family.

5. Joy and acceptance are hard work

Hayley: I start each day thinking about things I’m grateful for: A warm house, food on the table, my children are loved, I can walk…

Skye: I repeat what my doctor said: Be kind to yourself and your body. Whenever I get frustrated by my lack of ability, I remind myself that it’s OK to be tired. It’s OK to hang out on the couch all day. Before this new drug, I enjoyed each day and was thankful I was still here. Now my days are grouchy. I don’t know how to return to feeling grateful. I’m in limbo.

Cara: I recently got fantastic news: My meds are working. But I’m not happy about it. I had let my guard down when I found out I had MBC, so I can’t have joy for this. My therapist said my mom could help by holding that joy; I need to use my energy to protect myself. That was helpful. So I told my mom, “You can hold this joy for me.”

Nikki: Everything’s about perspective. To come at it with openness. We’re all victims of natural circumstances — that’s just the way life is. So, I choose to control my reaction to situations. How I respond to them is my choice.

6. Listening and validation help

Skye: I am tired of people telling me, “We all die at some point.” People also tell me I won’t die because I look and seem healthy.

Hayley: I get looks from people who don’t believe I’ve had MBC for 7 years. They say, “Oh, not you! You’ll live until you’re old!” They have good intentions, but it diminishes my experience.

Nikki: Sometimes, there’s nothing that makes it better. There’s no solving it. There’s no fixing. It’s dealing and accepting. It means something when people take time out of their lives and show up. It gives me a feeling that I still matter. That I exist in their lives.

Cara: I don’t need casseroles. I don’t need to go out and process it over lunch. It’s not helpful when people say I’m a warrior, and I’ll beat this. Practical things help. A friend showed up and took me to some soccer games. She understood and acted on what I needed. Recently my mom said, “I want you to know, I understand these meds will eventually stop working.” And I thought, “Good, you’re listening.”

The bottom line

Receiving a diagnosis of MBC can be overwhelming. For many people, grief and fear may be constant, and it can be difficult to accept your diagnosis and find joy.

But having the support of friends and family to simply listen and be there for you is essential. There’s nothing like feeling understood, and it’s important that others listen with open ears.