That Ribbon

After He Said Cancer | A Memoir

It’s not that I didn’t support women with breast cancer. I most certainly did.

Breast cancer had hit the women in my family. My favorite memories with my Swedish aunt are laughing with her. She had a joy that came from deep in her soul. Her humor and zest for life was legendary in the family. When she was young, she had a fun, rebellious streak. More than once, my grandmother had to talk with the school principal to smooth over something that she had done. Like when she picked all the flowers in the decorative garden beds around the school. Or when she kept pulling out and lighting a new cigarette in class every time the teacher ripped one out of her mouth.

We laughed about these escapades and a million other things. Take things a little less seriously, she taught me. Enjoy life while you can. When I was fifteen, my mom and I spent a week on a sailboat with her and my uncle navigating the archipelago outside Stockholm. It was a particularly carefree and happy time. Of all the happy adults on that trip, my aunt laughed the most. And when she laughed, I couldn’t help but laugh too.

She knew about the lump in her breast for a few years before she told a physician friend and had it checked out. Probably, she was in denial. The last time I saw her, I was pregnant with my first child in my mid-30’s. My husband and I went out to her summer cottage in the archipelago with other family to celebrate being together. Shortly after that visit, she lost her 10-year battle with breast cancer.

Losing her still felt raw. There are only so many beautiful, loving and truly fun people in the world. She was one, and I want more time with her. The death of someone you are close to leaves a hole in your heart that can’t be filled by someone else. A beautiful person becomes imprinted on your soul. When they leave, it just hurts. Not even time can heal a wound like this.

A few years later, a small cluster of white dots appeared on my mother’s mammogram. These were calcifications the radiologist told her, which were small deposits of calcium within the breast tissue – a worrisome sign for breast cancer. A biopsy was done immediately. Ductal carcinoma in situ was the diagnosis, which meant that the lining of the milk ducts had become cancerous but had not yet begun to spread. The cancer was early enough that the surgery was the only therapy needed to take care of the problem.

For several years, I had donated and raised money for breast cancer research. I had formed a team of runners on a few occasions that collected pledges from donors. I think my mom and I even walked 20-miles once to support breast cancer – which I wouldn’t recommend if you haven’t trained for it. Between blisters and bad hip pain that started around mile 16, I have no idea how either one of us crossed the finish line.

A big part of my career as an obstetrician-gynecologist was dedicated toward finding and preventing early breast cancers in my patients. When recommending breast self-exam was still in vogue, I would chatter on about the importance of getting to know one’s own breast tissue. If I could save even one patient by encouraging her to find a breast cancer in an early stage, all of those conversations would have been worth it.

The pink ribbon that symbolized support for breast cancer wasn’t simply a ribbon. It represented my emotional connection with my aunt and mom, resentment of the cancer that took my aunt, and hope that new treatments would be developed. I had T-shirts with the pink ribbon in my closet and a pin that I wore on my white doctor’s coat. Wearing the pink ribbon was an act of solidarity with other women diagnosed with breast cancer. A sign of courage and resilience in the face of a difficult disease.

I saw the pink ribbon differently now. As long as the ribbon remained pink, it would feel like the world of women’s breast cancer was excluding men. Men, like my husband, that meant the world to me. There was hardly any public health recognition that men could develop breast cancer. Their cancers were typically diagnosed at a late stage and survival was much worse than women, even accounting for their cancer stage at diagnosis. Men were being forgotten by the major organizations advocating for patients with breast cancer. And the pink ribbon wasn’t helping.

Part of me hated the pink ribbon for excluding men with breast cancer. The major nonprofits working to direct public awareness and funding to breast cancer had a public image built for a woman’s disease. If there was greater public awareness of the risks of breast cancer in men, maybe my husband would have been screened sooner and his chances of surviving long-term would be better.

There were so many men who might benefit from having a conversation about their breast cancer risk with their doctors. Certainly, men with a history of breast cancer in their families should discuss this with their doctor. But there were also groups of men known to have a higher risk of cancer from their exposure to cancer-causing substances – like fire fighters and 911 survivors – that should discuss this with their doctor.

The pink ribbon perpetuated a myth that only women got breast cancer. The late-stage breast cancer in my husband wasn’t included under this pink umbrella. Clinic receptionists would often be shocked when he checked in for his breast cancer appointment. Men were excluded from many breast cancer support groups, which I could understand. But being excluded from the few touch points of support also felt lonely.

That was the crux of it. His breast cancer didn’t feel like the breast cancer of my aunt or my mother, where we went out to raise money and wear our pink ribbons to show support. Few people understood his diagnosis or could relate to it. Even at the breast cancer clinic, I never saw another male patient being called by the medical assistant to see the doctor. When someone expressed shock at his diagnosis, I felt a little more alone.

Our oncologist had given us the name of an organization supporting men with breast cancer. In the beginning, I had been too depressed to reach out to them. Now, I craved the support from people who shared my experience. More than anything, I wanted to connect with other women, whose husbands or partners were diagnosed with breast cancer.

I needed community.

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