In 2008, I was referred for a needle biopsy following an abnormal mammogram of my left breast. The biopsy showed atypical cells. I was never offered the option of “watchful waiting.” Today, this dismays me.
I was referred to a surgeon for a surgical biopsy to remove the atypical cells and check for nearby cancer cells. The surgical biopsy showed that I had two microscopic areas of DCIS. My DCIS was small, low grade, and not necrotic. Unfortunately, the cells were near the edge of the tissue sample so I did not have clear margins. The surgery took a golf-ball sized chunk of my (already small) left breast and some chest muscle tissue. In spite of my “favorable” (to quote my surgeon) situation, treatment was the usual: more surgery to achieve clear margins and 6 weeks of radiation. Even the surgeon seemed reluctant to do more surgery for the sake of clear margins on low grade DCIS.
Devastated, I went to the Internet. The more I read about DCIS, the less comfortable I felt with aggressive treatment.
After hearing my concerns, a neighbor brought me Dr. Christine Northrup’s Women’s Bodies, Women’s Wisdom. Reading Dr. Northrup’s perspective on DCIS gave me the courage to further question how much treatment I needed.
Back on the Internet, I stumbled on the Van Nuys Index. I requested a copy of my pathology results. My scores were all 1’s except for the lack of clear margins for a total score of 6.
Armed with this information and with the support of my family, I told my surgeon I would not have further surgery. I declined a referral to a radiation oncologist. This took a lot of courage. Over-treatment of breast cancer was barely talked about in 2008. However, my surgeon did not try to talk me out of my plan. I think he had reservations himself.
My six-month follow-up mammogram was negative for any sign of DCIS!
But I dreaded further mammograms. I understood mammography screening from a
population perspective. I have a masters degree in public health and worked in the field for many years. But mammograms just weren’t working for me personally. I had never quite recovered from an earlier false-positive mammogram, also involving my left breast, which took six agonizing weeks from call-back to final pathology results. And I didn’t want to go through another DCIS experience. My left breast was screaming at me to be left alone. I discontinued getting mammograms.
I also chose to consider myself as over-diagnosed rather than having a disease which needed to be followed. This has freed me from so much fear and anxiety and enabled me to focus on my total well-being.
I have never regretted my decisions. I also know that someone else under identical circumstances might make different decisions. What is important is to be fully informed so that you can make the decisions which are right for you.