Read about Koa Life founder, Amanda West, and her mission to empower others with information about breast cancer on Susan G. Komen.

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.

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Tests are scary. Whether it is a math exam or a medical test, you always hope to pass and fear to fail. The test I want to talk about, is genetic testing for cancer.

I was diagnosed with breast cancer relatively early in life. Because I was adopted, I didn't have any family history to look back on to understand my risk for developing breast cancer. After speaking with my doctor, it became clear that I needed to get tested to understand my genetic risk for cancer.

The test itself was simple but waiting was rough. What if I tested positive for BRCA1 or BRCA2, which would mean I’d have a higher chance of breast cancer occurring or ovarian cancer. Thankfully, I passed the test and was clear.

Fast forward to 2019, when my doctor suggested additional testing, due to recent improvements in genetic testing’s ability to identify genetic mutations linked to cancer. I mustered up my courage and agreed to have 135 genes tested for the most common types of cancer. I asked to get the results before my trip to Hawaii, to ensure I’d have some down time to process the possible bad news.

While I was able to get some relief from my genetic test results, I know others who have used genetic tests for preventative measures against breast cancer. Kerry Lien, a colleague of mine, shared her genetic testing story that opened my eyes to the power of genetic testing for proactive treatments.

Here is Kerry Lien’s story:

While working for a Breast Cancer Awareness event at Salesforce, the organizers were giving everyone a free Color genetics test. I didn't think much of it. I ordered the test and forgot about it.

A year later, I was once again reminded of this test and thought I’d give it another try. The test was easy and I didn’t think much of it. Not until I got the results.

The results came back positive for the BRCA2 gene mutation. And though I have some history of breast cancer and ovarian cancer in my extended family, the risk of having cancer was never top of mind. I didn’t even know what BRCA Gene Mutation was, other than hearing about it via Angelina Jolie.

I immediately called a genetics counselor and received some very overwhelming news. “This gene mutation puts you at about a 70% risk of getting breast cancer and about a 30% chance of getting ovarian cancer in your lifetime.” I made an appointment with my gynecologist. She was surprised by the test results, since my relatives with cancer was removed from me (my aunt and great aunt had breast cancer from my father’s side and my grandmother had ovarian cancer on my mother’s side.) Plus, insurance doesn’t typically cover genetic tests for people who have cancer beyond a direct relative. In the spirit of being thorough, my doctor ordered another, more comprehensive genetic test called Myriad.

Unfortunately, the result also came back positive. Now it was time for some decisions.

My options were few. I could have preventative surgeries, screen more frequently (even though there isn’t good screening for ovarian cancer), or start taking medications to help combat a possible future life with cancer.

As I was going through all the options in my head, I knew I was leaning towards having the preventative surgeries. But what really cemented the decision was after a mass was found on my right breast during an MRI. I immediately opted for a biopsy, while thinking the worst.

The next 48 hours after the biopsy were tough. Emotions ran all over the place and it didn’t help that I was preparing for an important international work trip. The morning of my departure, I received a phone call from my doctor and I got the “all clear” sign.

Cue tears.

At that moment all the stress over the past few months, of doctors appointments, researching, the waiting and worrying, all came flooding out. I decided I did not want to go through this ordeal every 6 months.

It was time to remove what might one day become cancer.

After a double mastectomy with implant reconstruction and another surgery on the horizon, I am not quite healed. But having control of my future is comforting. I still have some difficulties accepting my new body, but I am looking forward to being around, a lot longer.

I know tests are not fun. But as they say, knowledge is power. Genetic testing for cancer gives you a fighting chance to stop it before it starts. My advice for others is to consult your doctor about genetic testing for breast cancer. This is for people both with breast cancer in their family or people who don’t even have a family history.