I Became One Of The 600,000 Women A Year Diagnosed With Stage 0 Breast Cancer

by Rachel Garlinghouse
Originally Published: 
Rachel Garlinghouse/Instagram

When I was told I had breast cancer, I was only thirty-five years old and a mother of four children, one of whom was an infant. Why did cancer choose me?

The doctor told me that fortunately, because I had done a self-breast exam, found a lump, and immediately sought medical attention, my cancer was in an early stage. It was so early, in fact, that DCIS (that’s ductal carcinoma in situ) is considered stage 0 breast cancer and is even sometimes called pre-cancer.

I’ll be honest. I didn’t feel any better knowing that my cancer was labeled as “zero.” The c-word freaked me out. The minute the news was delivered, my world was turned upside down and inside out. All of a sudden, I became a breast cancer patient, something I never thought would happen to me. Yet, as I later learned, the reality is that one in eight women will face an invasive breast cancer diagnosis in her lifetime. One in eight.

DCIS is more detectable than ever before because of improved mammograms. DCIS appears as what’s called microcalcifications or calcifications, looking like specks or shadows and clustered, on mammogram images. Early detection is absolutely a good thing. DCIS is contained in the milk ducts and hasn’t spread. According to Harvard Medicine, “nearly all women diagnosed at this early stage can be cured.” However, “without treatment, about 20% of DCIS cases will lead to invasive breast cancer within 10 years.” DCIS is usually not painful or palpable like mine was. 600,000 women are diagnosed each year with DCIS, which is just one type of breast cancer.

I was assured by my first surgeon that DCIS is not a medical emergency, even though the word cancer sets off all my internal warning bells. Despite her insistence, I immediately sought an opinion from a second breast surgeon. I liked my new doctor immediately. She was calm, no-nonsense, and very much a great listener. She sent me for a breast MRI, where we thankfully learned that my cancer didn’t appear to have become invasive. The next step was to choose between a lumpectomy and six weeks of radiation or a mastectomy. (Sometimes DCIS is treated with a lumpectomy only.) The decision was mine.

Here’s the tricky thing about DCIS. In 25% of cases, DCIS becomes invasive. To me, 25% is significant. Unfortunately, there’s no way to know if or when a woman’s DCIS will become invasive. Therefore, doctors and patients have to make tough decisions after a woman is diagnosed.

Some women choose not have surgery, instead taking a wait-and-see approach. They feel that exposing themselves to radiation, which has its own side effects and risks, plus surgery, is too drastic. They might instead opt for screenings every six months.

The decision isn’t easy. Like me, a breast cancer patient has to look at the big picture, including genetic test results. I was negative for the BRCA1 and BRCA2 genes, the ones that significantly raise a woman’s risk of breast cancer (and other cancers). I also didn’t have a family history of breast cancer. What’s strange in my case is that I also didn’t have any major risk factors. I didn’t smoke, I rarely consumed alcohol, I wasn’t overweight, I ate mostly organic foods, I exercised at least four times a week, and I didn’t use toxic cleaning chemicals in my house. Despite all my healthy habits, I became part of the 11% of young women under age forty-five diagnosed with breast cancer.

Cancer chose me, and I had a big decision to make. Should I have the lumpectomy, pray that the borders of removed tissue were clear of cancer, undergo six weeks of radiation, and then hope that I’d made the right choice? Or, would I take the much more drastic option and have a bi-lateral mastectomy?

Initially, I was very certain that I’d choose the lumpectomy. It just made sense not to let cancer take my breasts from me. I spent about two weeks making pros and cons lists, researching my options, and praying. I can’t tell you why, in the moment, but I only felt a strong sense of reassurance and peace about choosing to have the mastectomy.

A few weeks later, I had a bi-lateral, direct-to-implant, skin and nipple sparing mastectomy. As I recovered at home, surgical drains snaking from my chest, getting assistance to do everything from showering to going to the bathroom, and taking muscle relaxers and painkillers, I waited for my pathology results. Would the pathologist who was examining my removed breast tissue find anything we didn’t anticipate, or would I be declared cancer free?

I had to wait a torturous three weeks for my results, as the lab was backed up from an overwhelming intake. My removed lymph nodes were clear. However, lurking in my removed breast tissue were two teeny areas of invasive, previously undetected cancer, so small that even the MRI hadn’t picked it up. The mastectomy was the right decision.

What I’ve learned through my breast cancer journey is that all cases are different, and that it’s critically important that women advocate for themselves. We need to know our own bodies, by doing our self breast exams. We need to keep our annual well-woman appointments, including asking for a clinical breast exam from our provider. We also need to know our family medical history, get the genetic test if we are at risk, and let our doctor know immediately if we feel or see anything suspicious on our breasts. Mammograms are key to early detection, and they shouldn’t be postponed.

DCIS, despite its cure-rate and stage zero label, can still be unnerving and life-altering. Breast cancer, as I often say, is a beast, a jerk, and a liar. We have to do everything in our power to battle it and to encourage our fellow women to do the same.

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