Karen Kratenstein is a breast cancer survivor living in Queens, New York. Karen, who is 57 years old, realized she had missed her screening mammogram during the COVID-19 pandemic and was later diagnosed with stage I cancer. Karen has turned to writing to help others living with cancer.

Upon learning I had stage I breast cancer and not knowing what the next few months would bring, I began to notice different reactions from the people who were closest to me, or who I perceived as being close to me. Their reactions ranged from shock, to disbelief, to blame, to abandonment, which made me think about what I would do in their situation.

My cancer diagnosis came after I realized I had missed my screening mammogram during the COVID-19 pandemic. I actually had a prescription for the mammogram sitting on my table for weeks. I did breast self-exams all the time and did not feel anything, but little did I know that not everything can be felt.

After receiving the results from my mammogram, I was in shock when my doctor said they would be doing multiple biopsies. I was not prepared for this, but then again, who is? Upon learning that it was, indeed, cancer in 2 places, I immediately went into “robot” mode and tried to cut my emotions off. I started calling several doctors. For 3 weeks, I kept my diagnosis to myself. I did not want to tell my 84-year-old dad who had buried his son and my brother, a police officer who had died from complications after serving on 9/11.

Once I started telling people about my diagnosis, I was kind of shocked at their reactions. One person said, “Are you sure?” Another said, “Well, you did not have children, so you are more predisposed.” I kept hearing the phrases, “It’s all about your mindset,” “Stay positive,” “Life does not give you more than you can handle,” and “Cheer up,” but none of these words helped me.

What I wanted people to say—and not to say—during cancer

To respond to the reactions I received from people, I started saying the word “stop.” Stop telling me to stay positive. Stop telling me it could be worse. Stop telling me you are praying for me when you have not even picked up the phone once. Stop telling me it will be okay, as you do not know that and neither do I. Stop telling me not to be depressed.

As I landed in the hospital to have a partial mastectomy, getting a bout of cellulitis shortly after surgery and then having a hard time with radiation therapy, I kept hearing the same unhelpful words from people over and over again. So, I started telling those around me that the best way to support me began with the word “start.” Start telling me you love me. Start calling me and reaching out to see how I am doing. Start making me laugh, as laughter is a medicine that we can all use. Start showing me you care instead of just saying it, in any way possible that you can. Start asking me what I need and not what you want to do for me. A friend who could not be there physically for me asked the best question: “What can I do to support you?”

The truth is, many people do not know what to say to a loved one with cancer, and some leave. The ones that left, I gladly let go, as I learned I only wanted people in my life who could support me. Some people left because they were afraid—afraid to look at someone struggling with cancer right in front of them, as if they could catch it.

How to show support to a loved one with cancer

I think much of supporting a loved one with cancer really comes down to putting yourself in their situation. When I was told I had cancer, my first reactions were fear, disbelief, and anger. Then other emotions came along.

For family members and friends who want to be supportive to their loved one with cancer, I suggest asking the person what you can do to help them get through this, instead of telling them what you will do for them. Everyone is different, and how they navigate their cancer diagnosis is a very personal choice. One person may need you to accompany them to their appointments; another person may not. I think the word “support” is key, and realize that “support” will mean different things to different people.

How people with cancer can ask for the support they need

Cancer can make you feel isolated, and that is the last thing anyone living with cancer needs. We must focus our energy to help ourselves in not just what we need physically, but what we need mentally and emotionally as well. I learned that it’s important to surround yourself with people who are willing to learn how to support you in the ways you need. Because the fact is, some people do have to be taught what to do when supporting a loved one with cancer. I quickly learned this, as sometimes I made the mistake of thinking people naturally knew how to respond.

Unfortunately, it often falls to us, the ones who are going through cancer, to guide our loved ones and show them how to support us. I learned how important it is to express what you need and how you need it. I tend to shut down in difficult situations, so at first, it was hard for me to tell people what I really needed. If you are like me, I suggest you practice asking for what you need, which will become easier over time.

As I write this, I am not clear of cancer yet. I guess I never truly will be, and concerns will always be in the back of my mind. Researching, speaking to other people who are on this journey, and choosing the right doctors for me has helped me greatly, as has writing about my experience. Cancer is a hard pill to swallow, but with the right support system, we can do it.

The author has no relationships relevant to this content to disclose.