After the Diagnosis: Supporting Your Loved One

How do you support a loved one after a breast cancer diagnosis? What if you say the wrong thing? I want to share with you four ways to help.

FIRST, SIT WITH THEM

I remember getting the call. It was a sunny, Friday in April around 5pm. I was happy. I convinced myself not to worry. Breast cancer didn’t run in my family, so I didn’t need to worry about the test results. In fact, I was looking forward to real proof that I was healthy. Then my radiologist called and pulled those rose colored glasses off.

I had Ductal Carcinoma In Situ (DCIS).

The rest of what she said was a blur ... caught early, options, blah blah bah. I couldn’t hear anymore. She gave me her cell number in case I had any questions.

After I hung up, my husband just held me. He didn’t know what to say, how to best help. It turns out he did exactly the right thing.

Everyone processes this kind of news differently. The best thing you can do is to be there for them. Let them talk, cry, scream or be silent but let them know they are not alone in this battle. If they need to be by themselves, it’s ok. An introvert like my husband would go off to his man cave, do research, gather information from trusted sources, think it through - and only after that be able to share how he was feeling with me. But he knew that I was an extrovert. I like to talk things out, react immediately, emote. This time though, I was numb. There were no words, so we sat together, as we held each other, looking at the beautiful sunset through the tears in our eyes.

THEN, CALL IN THE CAVALRY

Once the shock of the diagnosis passed, it was time to fight. Cancer wasn’t going to win. That night, I called my sister who survived Hodgkins Disease three times. She was our miracle survivor sister. She showed me how to “fit cancer into my life instead of trying to fit my life into cancer.“ She listened, cried with me, and reminded me I was not alone. She pointed me to trusted sources where I could learn about DCIS and treatments, where to read cancer survivor stories, and encouraged me to reach out to breast cancer survivors....but under no circumstances was I to do random searches on the internet.

Behind the scenes, my husband and sister called in the cavalry. They took on the emotional task of letting my best friends and relatives know about my diagnosis. My friends and family did a great job in helping keep my spirits up throughout the whole ordeal. College friends kept me bedecked in pink stuff - clothing, jewelry, pens, journals, notebooks, hats, socks, scarves - to make a statement and keep me and my caregivers smiling. Everybody sent cards, books, letters and good luck charms, prayers, positive energy and white light to let me know they were thinking of me. A few even painted my name on their arms and walked in my honor to raise money for cancer research.

I didn’t want to broadcast widely that I had cancer. At first, I just wrote in my own journal. Eventually, I started a small email list and a blog for close family and friends .... which ended up being broadcast accidentally on Facebook. Once the news was out, writing for me was cathartic. It helped me put a positive spin on what was happening. I even started getting comments from people saying how much my words were hitting the mark them or their loved ones going through something very similar. But not every patient is going to be up for this.

In this digital age, another way to help get the message out to your cavalry is through a Facebook page or a profile on Caring Bridge. You’ll be amazed at how photos, journal entries and comments can help you and your loved ones.

NEXT, LINE UP THE CANCER FIGHTING TEAM

The time between diagnosis and treatment is one of the most unsettling time. Something bad is in their body and you want it out. I think about people who don’t have my sister to call on. Where do they go for help? This is where Koa Life will provide trusted resources for the right moment during breast cancer.

The good news is cancer treatments are evolving every day. But it can be sea of options and it’s easy to go down a research rabbit hole. Helping your loved ones line up their cancer fighting team as quickly as possible is probably the most important thing you can do at this step in their process.

For some people, staying local is the most important thing, since it minimizes disruption in their life. Help them find the best location by researching the doctors in the facilities closest to you.

For others, it’s about going where you feel comfortable despite the distance. During my sister’s roller coaster with the dreaded “C” we learned about the amazing medical team, and family resources at Dana Farber Cancer Institute. My husband and I agreed immediately on Dana Farber in Boston, even though we lived in NY.

Choosing an oncologist is a very personal decision. It is important that your loved one feels comfortable with their oncologist and trusts their opinions as they navigate treatment options. This will minimize anxiety down the road.

The first oncologist your primary care doc suggests might be your best option, but they might turn out to be the wrong match for your loved one and that’s ok. If a cancer practice isn’t building confidence for your loved one, get a second, third or fourth opinion. Do research on the practitioners, find out how long they’ve been in practice and how connected they are to the latest advancements in breast cancer treatments. Ask for referrals and call them. I found it useful to ask other survivors about their experience and recommendations before I settled on my team and treatment plan.

ALWAYS, BE A PATIENT ADVOCATE

The most important thing to remember is your loved one - the patient - is in control of what and when treatment is right. It’s not up to the doctor or you.

Until it’s gone, cancer will never leave your loved one’s mind. She’ll think about it all day, every day and even dream about it. If possible, go with your loved one to every appointment and help her prepare. Help her think through what she wants to ask the doctor before each visit. Write questions in a notebook and take notes at each appointment. Let the patient focus on the doctor, while you focus on taking the notes. Be sure to let her drive discussions with the doctors.

Take nothing for granted. Help your loved one weigh the options and prepare for the next time she speaks with her medical team. When my sister was going through her journey, we found many helpful resources to help us support her at the Dana Farber Cancer Institute library much of which is now online.

And encourage her to seek help in dealing with the anxiety of facing her own mortality. Sometimes talking to a professional can help more than what they might feel is too heavy burden for their caregivers.

Most importantly, consider talking to someone yourself. It is hard to support your loved one if you aren’t taking care of yourself.