Keeping your cancer confidential

I didn’t post it on Facebook, but I didn’t keep it a secret either. For me, choosing to share my breast cancer diagnosis with friends, family, my kids’ teachers, the TSA agent at the airport—basically everyone—ended up being a blessing.

My friends organized train meals after my double mastectomy so that my husband wouldn’t have to worry about feeding our three children; Parents stepped up to ferry children to and from activities; As for the TSA agent at the airport, he gently assured me that no, the body scanner wouldn’t reveal my new breasts.

However, not everyone chooses to share a cancer diagnosis, and as the daughter and wife of two who chose to keep their cancers private, I was saddened and overwhelmed.

I was 16 years old when my father was first diagnosed with lymphoma. The day I found out he had come home from surgery and was lying in bed with purple toes. He was vague about it, giving me very little explanation. Throughout his 30-year battle with lymphoma, he rarely spoke about treatments, surgeries, or recurrences, even after the accident.

I remember several times saying to him, “Why didn’t you tell me?” His response was always a dismissive, “Uh, no big deal.”

Likewise, my father-in-law kept his prostate cancer under wraps for years. While he told the family when he was first diagnosed, after his prostatectomy, we haven’t heard another word from him. But during the later years, there were many moments when something didn’t seem right with him, when he looked so right, so tired, so weak.

Once I asked him explicitly about prostate cancer, and he said, “Let’s just say, I’ve been dealing with it for 20 years.” This was the first time he had admitted that there was more to it than the initial surgery.

During the COVID-19 pandemic he confronted us frequently, but he hid his face from the camera. It’s starting to look fishy. After some time, he finally told my husband that his prostate cancer had metastasized, that he was undergoing treatment and had lost all of his hair. As before, this would be the last anyone really heard of. While we know he’s still in treatment, he’s very elaborative and evasive about his situation.

I’ve always wondered about this tendency to hide cancer. Is it generation? There was a time when people whispered the word “cancer” or called it “The Big C.” Having cancer seems to be associated with feelings of shame and embarrassment, which may still resonate with some people.

For these two men in particular, the “patriarchs,” they likely feel like they don’t want anyone to worry about them, and they don’t want to be a burden to their children, especially. On an intrinsic emotional level, there are undoubtedly feelings of vulnerability and questions about their mortality — heavy stuff for men of a certain age and age.

Most of us diagnosed with cancer struggle to maintain a sense of our identity at some point. No one wants to be known as a cancer or to feel like people treat them differently. I know that when I had cancer, I did everything I could not to talk about it. I just wanted to have casual conversations and laugh and be the person I always was. Sympathetic questions or tearful hugs made me anxious, and I usually brushed them off with a joke about my new breast size.

For everyone who undergoes a cancer diagnosis and treatment, the emotional experience is personal and different. Whatever reasons a person may have for wanting to keep their Cancer a secret (family pressures, employment concerns etc.), at the end of the day, we all need a support system. I know I couldn’t get by without the people who crowd around my family offering meals, carpools, and good (often good) jokes.

I’ve been reading a lot about this trying to understand why people choose to keep the disease a secret. From the first person accounts I’ve read, many people who chose to keep their illness private regretted not telling their family ahead of time, and family members who were left in the dark ended up feeling hurt or resentful. Of course, this is all individual, but I know that for my family, who are still dealing with the mystery of a loved one’s illness, it is always more painful to leave him wondering if the last time we see my father-in-law will be the last time we see him.

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