31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 27 — Grade “F” in DCIS Communication

Did you know…

Some health-care providers get an “F” in communication.

Celebrity chef Sandra Lee said her doctors told her DCIS was a “ticking time bomb.”

In January, 2010, when I brought an article, Take Carcinoma Out of DCIS and Ease Off Treatment, to show a breast surgeon about my preference for “active surveillance” of low-risk DCIS, she was quickly dismissive. She said:

  • “You don’t want to wait until it is untreatable.”

I asked if she had anyone else like me. She said she had only one 85 year old lady who refused radiation therapy and came back every couple of years to cut more DCIS out. Then she said:

  • “Women like you don’t come back.”

Eighteen months later, the alarms went off from a “highly suspicious mammogram.”  I ended up getting scared into surgery. Yet, still a “close margin” of low-risk DCIS remained. Now this surgeon said:

  • “Your breast is like spoiled soup. It’s not worth saving. “
  • “Don’t be stupid Donna, at least do 3 weeks of radiation.”

That was over 8 years ago…and I finally learned my lesson to never go back to a doctor who was not in alignment with my values, preferences and research findings.

Over the last 10 years, I have heard from many women who say they felt “psychologically terrorized” by health-care providers. One woman wrote to me:

“After the surgery, the surgeon talked to my husband and got in his face and said, “If she doesn’t do the radiation and medicine she is playing with fire.” He scared the crap out of my husband and later that evening my husband (with tears in his eyes) came to me and said, “Honey I don’t want you to die, please do as the doctor suggests.”  The fear mongering was not only applied to me but to my family members as well.”

She was very aggressive and alarming in her predictions of my health situation and stated my re-occurrence rate was 40+% with no radiation or the 5 year pill (which is now the 10 year pill.)  All her suggestions were negative, alarming and requiring the most extreme and aggressive of treatments, (radiation and the pill.)  She said, “good thing this in the right breast as if it were on the left side we would have to be careful about heart damage.  She didn’t tell me you only get one shot at radiation in an area nor the hazards of radiation on my breast tissues,  or the future possible effects, etc. 

*Remember, this was a one-time consultation and during this visit I was checked in (almost like a hospital visit, they took my picture for their file, etc.) AND they automatically set me up assuming I was to be an on -going patient even though I didn’t agree to this during the consult. Also during this visit they told me, “We have our own pharmacy with our practice so you WILL be purchasing the medicine from us and not a regular pharmacy.  They even gave me an estimate of what this medicine would cost me out of pocket, around $250.00 a month. Even though I DID NOT agree in any way or give any verbal confirmation or indication that I was coming back to her, they were assuming that I was going to sign up.  *My intuition was going off at this point as I sensed some sort of corporate greed mentality going on.  She wanted to start radiation right away and at this point I started crying and said I didn’t think I could mentally handle it, that I needed to do my research to see if I really needed this.  She backed off and said “Well lets start in November then.”  There was no talk or consideration of thinking this over.  It was just assumed I would do this regardless.”

Communication 101 for DCIS:

In Communication Between Patients and Providers and Informed Decision Making, Joann G. Elmore, Pamela S. Ganschow, and Berta M. Geller state:

“Incorporating patient input is important for all medical decisions and is essential for decisions about preference-sensitive conditions—those for which two or more valid treatment choices are available to most patients, even if one of those choices is to forgo treatment.”

Positive framing emphasizes healthy outcomes and the absence of disease, while negative framing emphasizes the presence of disease. A positive frame seems preferable for most patients. For example, after 10 years, more than 98% of women diagnosed with DCIS will not die of breast cancer. We can also describe this as 980 of 1000 women diagnosed with DCIS will not die of breast cancer in 10 years.”

General Suggestions for Communication — (Summary)

  • Introduce informed consent at the time of mammography invitation to introduce the concept of carcinoma in situ and the potential harms from overdiagnosis and overtreatment of otherwise indolent DCIS.
  • For women diagnosed with DCIS, place the patient’s risk of developing an invasive breast cancer in the context of developing other diseases. “Women rarely die of breast cancer after a diagnosis of DCIS; they are more likely to die of many other causes.”
  • Use absolute risks rather then relative risk #s.
  • Listen carefully for values and what patients say (e.g,: “I hate medications.”)
  • Recognize and validate emotions — Acknowledge that a diagnosis of DCIS can be frightening and confusing. Check to see if she understands what you have said or if she has any questions.
  • Use non-medical language and simple words that are easy to understand.
  • Consider the patient’s frame of reference, and use concepts that are inclusive and culturally appropriate.
  • Address uncertainty related to DCIS and treatment options in addition to uncertainties about natural progression of DCIS if left untreated.
  • Identify and address misperceptions. Separate scientific data from sensational factoids.
  • Emphasize the potential for positive outcomes. This approach can greatly reduce patients’ anxiety when they hear the initial diagnosis of DCIS.
  • Make certain that the patient does not rush to make treatment decisions. Let her know there is time to make decisions and encourage her to come back to discuss options after she has had time to think about and discuss them with family and friends.
  • Encourage use of decision aids and have patients write down any questions for follow-up visit.

See also:

About Donna Pinto

I am originally from New Jersey and moved to Los Angeles with my family at age 12. After graduating from San Diego State University with a BA in Journalism, I had a short-stint in magazine advertising sales before landing my "dream job" with Club Med. For two years I worked at resorts in Mexico, The Bahamas, The Dominican Republic and Colorado. My husband Glenn & I met in Ixtapa, Mexico and we embarked on a two year honeymoon around the world. This was also a research project for a book we wrote called "When The Travel Bug Bites: Creative Ways to Earn, Save and Stay Abroad." I am also the author of a quote book for new graduates -- "Cheatnotes on Life: Lessons From The Classroom of Life." In 1997, we settled in San Diego and I was blessed to work part-time from home for non-profit organizations while raising our two boys. In 2010, a DCIS diagnosis changed my life. DCIS 411 is the culmination of my on-going journey and discoveries.
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