Written by Robin Warshaw, Contributing Writer
Women who are diagnosed with breast cancer and have young children may worry more about how the experience will affect their kids than themselves.
Cheryl Gordon, 41 of Kirkland, Washington, understands that fear from both sides. She was 5 years old when her mother went through treatment for inflammatory breast cancer (IBC) and died. When Cheryl, a university teaching associate in education, was diagnosed with stage IIb breast cancer, her oldest child was also 5.
Robin: Before your diagnosis, were you concerned about your family health history?
Cheryl: I was told there was no genetic component to IBC. I’m not convinced of that anymore, but my whole life I was told that [by family and a few doctors].
My mother was the only one in her family with breast cancer. She was diagnosed around 1980, when she was 31. I started having mammograms at 27 and they were always negative. I was diagnosed at 39, in 2014.
I think it was always in the back of my mind that this would happen. It’s one of those things you have to push aside. I couldn’t go through every day being afraid and waiting to be diagnosed. But, certainly, when I was diagnosed, I had the sense of, “Oh, of course!”…because I always felt I would probably have cancer.
Robin: When you were diagnosed, did you immediately realize that your son was the same age you were when your own mother was diagnosed?
Cheryl: Yes, and I think that was the hardest thing for me. Going through diagnosis, surgery and treatment, I felt I was living it through my 5-year-old eyes, watching my mother die, and as a mother with cancer. I know what it is like to have your mother die when you are young and I’m terrified that my children will also have to experience that pain.
Robin: Who told you your mother had cancer? What was it like?
Cheryl: I have an older sister and a younger brother, so he was only a baby. I remember my dad sitting my sister and I down and talking to us about it. And I remember being scared. My sister kept telling me, “It’ll be okay.”
I was understanding it on a 5-year-old level: Yes, mom is really sick but she was still doing normal, everyday things. She went through chemo, so her hair fell out. We thought her wigs were funny, so we would play with them.
A lot of family would come and visit. She would be too tired, so would rest a lot but in a family space. We would play nearby. She would lay on the floor because her joints hurt and the cold floor made them feel better.
Robin: Did you know about your mother’s treatment?
Cheryl: I’m not sure how clear my parents were about what was going on. She was in clinical trials and, with some of the medicines, her emotions would be all over the place. I have distinct memories of her having huge tantrums.
I don’t think I had any understanding of just how sick she was until she went to the hospital. My dad told me she was so sick she had to be closer to the doctors all the time. We went to see her in the hospital and she died a few days later.
Robin: What were you feeling?
Cheryl: I remember other kids thought it was really scary. To lose your parent, to other kids, that made us the weird kids.
Breast cancer was so taboo then. It wasn’t really talked about. Our teachers in elementary school tried to help, but they made it so much worse. I just wanted to be normal. I wanted, more than anything else, to be like every other kid in the class.
On Mother’s Day, we had to make cards. I remember thinking, “What do I do with my card? I have no one to give it to!” My dad tells the story that I asked him and he said, “Well, you can give it to me.” And I did. Every year.
Robin: How did you tell your sons (ages 2 and 5) about your diagnosis?
Cheryl: My husband and I decided to wait to tell our kids until we really knew what was going on. So I did all the testing, had an MRI and then met with my cancer team. After that, we talked to our kids individually. We said I had a “special sickness” in me and the doctors were going to take it out.
My older son had surgery the year before, with a cast afterwards, so I said I would have surgery and would have bandages. He could understand that because he had experienced it.
We talked about chemo as a “special medicine,” not the same as the Tylenol they take, that would make sure everything was gone. We explained that my hair would fall out and I would be very tired. I showed them my port, so they could touch it.
During this time, I heard my 5-year-old telling his friends, “You have to be gentle with my mom. She has this special medicine and her hair is going to fall out. Isn’t that funny? She’s not going to have any hair.”
Robin: How did your kids handle what went on during treatment?
Cheryl: My older son had a lot of anxiety around my surgery and chemo. He had a hard time because I looked so different, I was so tired and there were so many people in our house, helping. During chemo, I always wore a hat around them both. It scared them to see me without hair.
For my younger son, radiation was really hard. I think it was because I was gone every day for a couple hours. He was super clingy and would cry. He’s now 4 and still struggles with it. He still would rather be at home with me than anywhere else.
Robin: What were your feelings about that?
I had a lot of guilt that I brought all this fear, worry and sickness into our house. Even though I obviously did not want cancer, I had to look at my kids and see how scared they were.
This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.