I was first diagnosed with breast cancer at age 31 in 2004. I was young and healthy — I mean, no bikini model, but fit enough. So when I went to do the biopsy, the doctors thought they were being overly cautious. But lo and behold: cancer. That was three years before my son was born — and 13 years before I told him about my cancer.
After my initial diagnosis, I did a bilateral mastectomy, 16 weeks of chemotherapy, and my husband and I considered IVF — because chemo can ruin your chances of being able to get pregnant. Ultimately, we chose against IVF in hopes that we would be able to conceive after treatment.
Working with my oncologist, we came up with a plan for how we could try to conceive. While conception wasn’t initially successful, we were thrilled to learn I was pregnant in 2008. Truly, we felt like it was a miracle; we knew the statistics were not in our favor. Since I was to have the baby at an advanced maternal age and since I was a cancer survivor, I was watched closely during my pregnancy.
You can imagine the level of emotion I felt when I delivered my miracle baby on December 8, 2008. My husband and I were excited to put cancer behind us and start our new life with our sweet baby boy.
Several years later, on my 40th birthday, I chose to treat myself with a health-filled birthday present: a full-day doctor’s appointment at the Princeton Longevity Center.
The result showed I had the heart of a 29-year old (yippee) — and a suspicious lesion on my sternum. This turned out to be stage IV metastatic breast cancer — the same one from 2004. While I knew the statistics for breast cancer (that one in eight women will get it), I did not know that for 30% of those women, it will metastasize and come back.
I was in shock. I couldn’t help but just think about what stage IV meant. And to me, it meant death — and death right away.
My world was turned upside down. It took me a few weeks before I could even really grasp what was happening, as it all seemed to be going on so fast. I wasn’t sure if I was going to live for four months or four decades. The stakes were so much higher than my first time with cancer; now, I had my son to consider, in addition to my husband. I couldn’t imagine them living in a world without me, and I didn’t want to think about it. It made me physically sick considering it.
But cancer doesn’t care how you feel. It makes you have to think about these kinds of things anyway.
As I headed into my new treatments, I received lots of unsolicited advice on how we should navigate this cancer treatment, especially regarding what we should tell our child. While not a popular path, my husband and I decided to keep my cancer a secret from my son — who was 4.5 years old at the time.
We chose this path because we wanted to keep his innocence. We knew that this diagnosis was serious and could have serious results, but we wanted our family life to move forward in love and happiness rather than in fear.
While there were many people who pushed us to tell our son, we also received council from outside of our friends and family. We were grateful for the support from an organization called CancerCare. They counseled us over the phone and said to us, “If you don’t want to tell him, don’t tell him.”
I felt a sigh of relief. I’m not sure why I felt I needed the permission, but in some odd way, I just did.
Once we made the decision, we felt good about it — and knew that, depending on the treatment, we might need to revisit our plans.
When our son was young, it was easy to keep the secret. He knew that I was going to the doctor a lot, but we didn’t get into the details of why. He didn’t seem to really notice when I was tired, drained or really stressed out. He wasn’t overly interested in the details of why Mommy was going to the doctor.
What we did focus on was health and healthy living. That is what my son knows about me most. When I received the stage IV diagnosis, my focus was to be with my son for as long as I possibly could. I dug into every piece of research that I could about being well while healing. While I couldn’t control that I had cancer, I could control my lifestyle — and so I did. I created PrettyWellness to chronicle my journey; I hoped to inspire busy mothers and share healthy living tips.
As our son got older, keeping the secret became more difficult. When he was almost 10, it became clear that it was time to tell him about the cancer. My husband and I decided to share the news in stages as we’d learned this is a good approach in talking about serious issues with children. So we began to bring cancer into the conversation. We talked about the different types of cancers — as he’d begun to learn about in school. Some of those cancers people can live with, even get cured from. When the time was right — in September of last year, right before Breast Cancer Awareness Month — we told him directly about my cancer.
The conversation was simple and positive. We just told him, “Mommy had cancer, and that’s why she does her work with Pretty Wellness.” We reminded him that cancer can be scary, but it’s not scary for me. We kept it positive, just as I have chosen to do with all of my communication for Pretty Wellness and in my book, Happiness through Hardship.
Is treatment easy? No. I’m on a chemotherapy pill regimen. I go to Yale every month for treatment and every three months for scans. I’ve had radiation and a hysterectomy in the past few years. The hope is that I’m in treatment for the rest of my life — because that means it’s working.
We know we are fortunate to have been able to provide our son with a childhood that we hoped for — a childhood that was filled with hope and fun, rather than the gloom and doom of cancer. We do not regret our decision to keep my cancer secret from him for the first nine years of his life, and we are very grateful we had the chance to do just that.
There is no right way to tell (or not tell) your child about a cancer diagnosis. The choice is as individual as the person. We cannot know what our days would have been like had we told him sooner — and the good news is that we didn’t have to.
For all of those who are diagnosed with cancer, my advice is simple: Listen to your heart. It will tell you what is best for you, your children and your family. For some of you, that will mean you will need to tell your children; for others, you might have the ability to keep their innocence intact for longer. Whichever path, there is no wrong answer. Choose for yourself and cancel out the noise.
— Caryn Sullivan
This story originally appeared on SheKnows.