Revisit DCIS

I had a mastectomy 29 years ago because I was told that the lesions in my breast were cancer. I wrote about my journey on the precarious road to treatment for Ductal Carcinoma in Situ (DCIS). What I didn’t write about was the choice I had at the time to forgo treatment and elect active surveillance because no one offered me that option. 

Donna Pinto commented on my post a few weeks ago telling me of her effort to help women who are diagnosed this conflicting condition. They are still rushed to make a treatment choice. In some instances, they choose the most extreme one: double mastectomy.

Her Blog, DCIS411 raises the following questions about DCIS.

Is it cancer?  pre-cancer? or a risk factor? 

Why is it treated aggressively — similar to invasive cancer?  

Is active monitoring a better approach? 

What about diet & lifestyle for cancer risk-reduction? 

Why is “overdiagnosis” and “overtreatment” not communicated clearly to women?  

DCIS 411 exists to bring clarity to these questions 

Highlighting the latest scientific research, we amplify voices of experts working to redefine how DCIS is discussed by medical professionals, the media, and breast cancer organizations.

Most importantly, DCIS 411 empowers women to take an active role in advocating for their personal values and preferences for their health and well-being. 

And here is a link to her post.

Here is a post I wrote on August 30, 2015, ten years since my diagnosis and almost 20 years since my mastectomy. Not much has changed.

I’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.

(I got on with my life and thought little of my self proclaimed “advocacy” role. That is until Donna Pinto contacted me. How shameful after all this time little has been done to remove the word “carcinoma” from low risk DCIS)