SECOND GUESSING CANCER

stock-photo-doctor-with-mammography-292061516I’ve written in a previous post about my experience of being diagnosed with breast cancer 18 years ago. I’ve always wondered if I should have forgone a mastectomy and adopted a watch and wait stance. However, when my doctors never gave me that option and my family was aghast at my doing anything less than full warfare on the invading cells in my body, I gave in to surgery.

The type of cancer I had, ductal carcinoma in situ or DCIS, is still under investigation. Is it or isn’t it cancer? If it doesn’t leak out of the lining of the milk glands and metastasize, is it truly deadly? The treatments given to women can sometimes cause more problems than living with cells that, in some instances, resolve. So I was happy to see more attention given to finding answers in a new study about DCIS in the JAMA Oncology (online) August 20, 2015.

I had become an advocate of taking “cancer” out of DCIS label. That way women wouldn’t panic and rush to having mastectomies and in some cases prophylactic double mastectomies. Hopefully “watch and wait” would be an added choice rather than have women succumb to unnecessary treatment.

After I read the original article in JAMA—I am not going to tell you I understood all the statistics—I realized that DCIS is what most cancers are: complicated. Some types of DCIS can predict that a lethal breast cancer can occur in the future. I am more sympathetic of the tightrope that physicians and surgeons walk in counseling their patients.

The accompanying editorial by Laura Esserman in the same JAMA issue gives the following suggestions:

  1. Much of DCIS should be considered a “risk factor” for invasive breast cancer and an opportunity for targeted prevention.

  2. Radiation therapy should not be routinely offered after lumpectomy for DCIS lesions that are not high risk because it does not affect mortality.

  3. Low-and intermediate-grade DCIS does not affect mortality.

  4. We should continue to better understand the biological characteristics of the highest-risk DCIS (large, high grade, hormone receptor negative, HER2 positive, especially in very young and African American women) and test targeted approaches to reduce death from breast cancer.

Hopefully these suggestions will become a common practice in health care settings so women like me won’t be regretting a choice they made based on incomplete knowledge and overdiagnosis by the medical professionals.

WHEN CANCER IS NOT CANCER

CANCER- word-crashed-and-broken-into-pieces-isolated-on-whiteI was standing in front of the light boxes hanging on the wall in the breast surgeon’s office staring at the mammogram films of my left breast. The surgeon pointed to lesions that resembled a galaxy of twinkling stars in my milk ducts. The Milky Way. A bad joke. “You’ll need a biopsy,” she said. I was no longer a nurse practitioner but another fifty-five-year-old worried woman facing her mortality.

Days later, my husband chased after me as I raced to pick up the phone. “I’m sure it’s not cancer,” I said to reassure both of us as I lifted the receiver. But it was and it had a name: ductal carcinoma in situ, D.C.I.S.

A couple of weeks passed and on our 31st wedding anniversary, instead of enjoying a celebratory dinner, my husband and I sat stiffly in an oncologist’s office, hearing about lumpectomy with radiation versus mastectomy. And statistics: a one percent chance per year for the lesion to move to the unaffected breast. One percent might as well be one hundred percent my anxious brain calculated. It was cancer wasn’t it? So it had to be deadly.

But what if it wasn’t cancer? Back in 1997, the year of my diagnosis, I discovered the uncertainty about D.C.I.S. breaking through the cell wall and migrating—metastatic cancer was what killed you. I was working at the National Institutes of Health. I hastened into the library to search the oncology journals, talked with experts, learned about prognostic factors based on size, margins, nuclear grade of the cells. Serendipitously, I attended a conference where three female oncologists discussed whether or not D.C.I.S. would ever become invasive.

Although none of the health care providers I saw suggested wait and see as an option, I figured why not? The research findings were inconclusive. But my family’s reaction pushed me toward treatment. My husband felt waiting was too much of a risk. My daughter, newly married and working full-time, traveled across the US to be with me. The worry in my son’s voice belied his assurance I’d be okay. When I told my ninety-year-old mother I had breast cancer she cried and said, “It should be me.”

After the mastectomy, my surgeon declared me cured. I became a “survivor.” That identifier pushed me into high-alert-mode. I consulted a nutritionist and spent hundreds of dollars on vitamins and supplements. I had two large birthmarks excised from my skin to avoid melanoma since now I was cancer prone. I briefly entertained the idea of having a prophylactic mastectomy on the right breast. When a benign cyst was discovered on an ovary, I found a surgeon who agreed to remove both to prevent the chance of metastasis that could spread from breast to ovary. My primary provider treated my every ache with exaggerated alarm because of my history.

For the past 16 years, I succumbed to the psychological fear produced by the word cancer. Sadly, my story’s not unique.

Recently, there has been “ a growing concern — that hundreds of thousands of men and women are undergoing needless and sometimes disfiguring and harmful treatments for premalignant and cancerous lesions that are so slow growing they are unlikely to ever cause harm.

The advent of highly sensitive screening technology in recent years has increased the likelihood of finding these so-called incidentalomas — the name given to incidental findings detected during medical scans that most likely would never cause a problem. However, once doctors and patients are aware a lesion exists, they typically feel compelled to biopsy, treat and remove it, often at great physical and psychological pain and risk to the patient. The issue is often referred to as overdiagnosis, and the resulting unnecessary procedures to which patients are subjected are called overtreatment.” Tara Parker-Pope, Scientists Seek to Rein in Diagnoses of Cancer, New York Times, July 29, 2013.

Thankfully, the medical establishment has begun to suggest taking cancer out of the label ductal carcinoma in situ, calling it something like “high-grade dysplasia” or as stated above, incidentalomas. And also to rethink the frequency of mammograms.

There will likely be fallout from the mammogram industry toward discounting the significance of D.C.I.S. Some literature suggests that D.C.I.S. may even go away without treatment. And simply renaming D.C.I.S, sans cancer, seems almost too simplistic. But I believe both changes would prevent women in the future from physical and psychological damage due to overdiagnosis and overtreatment of D.C.I.S.

These changes can’t happen soon enough.9307443-cancer-and-eraser-showing-health-or-medical-concept