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:

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31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 26 — FEAR-MONGERING

Did you know…

Fear-mongering is defined as the action of deliberately arousing public fear or alarm about a particular issue.

Thanks to Dr Kenny Lin for his blog post in Common Sense Family Doctor :

Fear-mongering in thyroid and breast cancer screening

“From the 1980s-era American Cancer Society print advertisement that lectured women, “If you haven’t had a mammogram, you need more than your breasts examined,” promoters of breast cancer screening long used fear to motivate women to undergo screening mammography.

In 2015, several advocacy organizations successfully persuaded the U.S. Congress to override the U.S. Preventive Services Task Force’s “C” grade (small net benefit) on screening mammography for women aged 40-49 with a “Stop the Guidelines” campaign that included full-page advertisements in major newspapers asking the rhetorical question “Which of our wives, mothers, daughters, and sisters would be OK to lose?

Women under 50 are less likely to benefit because there is less lethal breast cancer to be found in younger women, and consequently much higher false positive rates that affect more than half of all women receiving annual mammograms from age 40 to 50. And the USPSTF didn’t tell clinicians don’t screen – more accurately, they said don’t screen reflexively, and the message to younger women is not to avoid mammograms, but to talk about the pros and cons with your doctor.

That hasn’t stopped a new alliance of radiologists and breast cancer surgeons from targeting the Task Force with a 40not50 campaign which encourages women in their 40s to turn off their brains, eschew shared decision-making, and demand that their doctors start screening them at age 40 because mammograms save lives, and a government-appointed panel (whose 16 current members include 6 women) wants to prevent women from seeing their 50th birthdays.

Notwithstanding the ulterior motives behind this absurd campaign, it is insulting to women. It says that they can’t be trusted to consider the medical evidence, have conversations with their primary care physicians, and make decisions about their healthcare that are right for them.”

Thank you for calling this out Dr. Lin! Well said!

Please also see:

31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 18 — Fear vs Facts

31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 21 — Biased Guidelines & Marketing

DCIS is NOT a “Ticking Time Bomb” — What Women Really Need to Know

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31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 25 — Unbiased 2nd PATHOLOGY opinion is a MUST

Did you know…

Aggressive treatments for DCIS are based on pathology — and 25% may be wrong.

This happened to me.

I had several opinions and 3 different pathology reports. My gut told me something was not right and I needed to keep investigating.

Luckily I was referred to expert pathologist, Dr. Michael Lagios. He reassured me all the DCIS tissue removed from my breast was in fact LOW GRADE with NO necrosis. This differed from my original pathology report which stated “intermediate” grade. Two other pathology reports from major medical institutions also stated intermediate and one even said “intermediate-high grade with necrosis.”

While every person’s situation is individual, I thought, not everyone can afford the $600 out of pocket fee for an unbiased expert 2nd pathology opinion. I asked Dr. Lagios for his permission to post my recorded consultation with him so women and their loved ones could benefit from my questions and his answers:

Listen to My Phone Consultation with Dr. Michael Lagios

Unfortunately Dr. Lagios recently retired. I asked for his recommendation for a specialist in breast pathology. He recommended Dr. Jean Simpson

From Dr. Lagios’s website:

The Importance of a Pathology 2nd Opinion in Breast Cancer

Treatment decisions for breast cancer and their likely success are critically dependent on the analysis of the pathologist which is summarized in the pathology diagnosis.  As a colleague once put it, “The diagnosis is like an architect’s drawing: if it is faulty, the house will collapse.”

​Unfortunately, inadvertent errors in interpretation, either for the actual diagnosis of carcinoma, or in evaluating size, stage and margins, are commonplace. The National Cancer Institute (NCI) and the American Cancer Society (ACS) strongly recommend a pathology review of the pathology slides, particularly for duct carcinoma in situ (DCIS) and other non-invasive lesions, for which the error rate on review may be as high as 25 percent. A second opinion may make the difference between a diagnosis of benign hyperplasia or an in situ carcinoma, and the need for re-excision, radiation therapy and/or chemotherapy. Second opinions can also help by confirming a diagnosis and providing reassurance that the patient is making a reasonable choice.

For a pathology second opinion to be of maximal value, it must be based on direct re-examination of the pathology slides used for the original diagnosis. In the course of making a therapeutic decision of their breast cancer far too many women receive second opinions merely based on review of the written reports. With many new breast cancers of minute size or those which are entirely non-invasive, the issue of a direct review of the diagnostic materials becomes even more critical.”

Gratitude

Thanks to my dear friend Sandie Walters who told me about Dr. Lagios and that she learned about the importance of a 2nd pathology opinion from Dr. Susan Love. Here is one of my very first blog posts Dec. 30, 2011: 2nd Opinions Matter!!!

Thank you Dr. Susan Love for helping women better understand and navigate a DCIS diagnosis!!





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31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 24 — The Word “Cancer” is Scary & Misleading for DCIS

Did you know…

Several breast cancer experts over the last 10+ years have questioned whether the word “carcinoma” should be removed from DCIS (Ductal Carcinoma in Situ).

“Because of the noninvasive nature of DCIS, coupled with its favorable prognosis, strong consideration should be given to remove the anxiety-producing term “carcinoma” from the description of DCIS.”

NIH State-of-the-Science Conference: Diagnosis and Management of Ductal Carcinoma in Situ (DCIS), 2009

In The Danger of DCIS, The Breast “Cancer” That’s Often Not In response to one of the most commonly diagnosed breast “cancers,” Dr. Shelley Hwang is staging a radically conservative campaign to save our breasts.

“The power of the C word is one reason Hwang and others of like mind have advocated eliminating carcinoma” from the name of DCIS, though so far the effort hasn’t really caught on. To test the idea, Hwang co-authored a study in which three groups of subjects were given a description of DCIS.”

When the word “cancer” was used to describe DCIS, women were more likely to choose immediate surgery.

When the words “breast lesion” or “abnormal cells” were used, women were more likely to choose “active surveillance.”

The word “cancer” scares us like a shark, but are most DCIS more like minnows?

“I had a woman in her early forties. She was single, had never been married, had never had kids. She decided to have a mastectomy, and she was never the same. It ruined her life. The woman had pre-cancer, a cluster of abnormal cells called ductal carcinoma in situ (DCIS). It’s an entity that isn’t cancer and will never become cancer in an estimated 70 percent of cases.

“Somehow DCIS ended up in the cancer camp rather than the risk-factor camp, and all my work is to push it back.”

Are physician’s concerns about DCIS for the right reasons?

“Another factor maintaining the DCIS status quo, what Hwang calls “the elephant in the room,” is doctors’ potent fear of being sued. There are at least three sets of specialists who are vulnerable to failing to find or adequately treat DCIS. The first are the radiologists, who examine mammograms to decide which configurations and concentrations of calcium deposits to refer for biopsy to determine if they’re DCIS. The second are the pathologists, who actually look at the cells under a microscope and decide which are funky enough to be deemed DCIS versus “atypical,” or benign. And finally, there are the surgeons, who recommend treatment to patients. “In this medical/legal environment,” as one doctor told me, it’s daunting to be the one to make the first move, especially when the research isn’t as solid as many physicians would like. Yet in Europe, where malpractice actions are less frequent and DCIS is less frequently treated, the breast cancer mortality rate is very similar to ours.” – Dr. Shelley Hwang

Another Terminology Survey in Australia

Australian researchers investigated the effect of describing DCIS as ‘abnormal cells’ versus ‘pre-invasive breast cancer cells’ on women’s concern and treatment preferences: “In a hypothetical scenario, interest in watchful waiting for DCIS was high, and changing terminology impacted women’s concern and treatment preferences.” – How different terminology for ductal carcinoma in situ impacts women’s concern and treatment preferences: a randomised comparison within a national community survey

New research asks When is cancer not really cancer?

PRECISION is an international consortium of researchers, physicians, and patient advocates working together to understand:

When Cancer is NOT REALLY CANCER

“While early cancer detection may offer a survival benefit, increasing numbers of ‘pre-cancerous lesions’ are also being identified that will never develop into lethal disease. These ‘pre-cancers’ are often treated aggressively to prevent potential progression into invasive cancer.” – PRECISION

A Proposal for Less Threatening Terminology

“A vast range of disorders—from indolent to fast-growing lesions—are labelled as cancer. Therefore, we believe that several changes should be made to the approach to cancer screening and care, such as use of new terminology for indolent and precancerous disorders. We propose the term indolent lesion of epithelial origin, or IDLE, for those lesions (currently labeled as cancers) and their precursors that are unlikely to cause harm if they are left untreated. Furthermore, precursors of cancer or high-risk disorders should not have the term cancer in them.” – Addressing overdiagnosis and overtreatment in cancer: a prescription for change

It’s been 10 years:

Take Carcinoma Out of DCIS and Ease Off Treatment, Medscape, Jan 2010

“The term carcinoma in the phrase ductal carcinoma in situ (DCIS) is misleading and troubling and ought to be dropped, or at least its dropping should be considered.”

“Minimal-risk lesions should not be called cancer.” – Dr. Laura Esserman 

  • “With DCIS, the bulk of what we find is not high grade.”
  • “Only high-grade DCIS is likely to progress to invasive breast cancer.”
  • “If it doesn’t look like high-grade DCIS, we should leave it alone. We would eliminate two thirds of all biopsies if we did.”
  •  “Currently there are sufficient data to stop and rethink the entire approach to DCIS.”
  • “Less than 5% of DCIS turns out to be something else, including invasive cancer.”
  • “There are now 60,000 new cases a year of DCIS in the United States. But we haven’t seen any drop in invasive cancers, despite treatment of DCIS as if it were early cancer.”  

Patient Advocates Say “Just Do it!”

shark-feature

Look for the SHARKS only —

High-risk DCIS and Invasive cancer

 

minnows

 

Stop looking for and over-treating low-risk IDLEs (minnows)

 

IMG_0236

 

Leave healthy women alone

 

 







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31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 23 — Double Mastectomies for DCIS?

Did you know…

“Many women who have DCIS are choosing not to just to get a mastectomy, but to get a bilateral mastectomy and have both breasts removed.” – Otis Brawley, NPR

“More women with ductal carcinoma in situ (DCIS) are choosing to add contralateral prophylactic mastectomy to their treatment, despite the paucity of evidence that it prolongs life. Since we published our studies, we have received more than 100 e-mails from patients telling us why they chose to undergo bilateral mastectomies when they only had disease in one breast.

A lot of them fear cancer.

A lot of them think that if they have bilateral mastectomies, that they’re going to eliminate the chance of ever getting cancer again, which, unfortunately, is not necessarily true.” – Big Increase In Use of Prophylactic Mastectomy for DCIS

Use of prophylactic mastectomy in the treatment of DCIS has steadily increased as it has for invasive cancer. – The mastectomy rate for DCIS is increasing in an equal-access healthcare system

“There is a low risk of contralateral breast cancer after DCIS for women treated with breast conserving surgery and this risk is low irrespective of age, family history, and characteristics of initial DCIS,” said Megan Miller, MD, of Memorial Sloan Kettering Cancer Center in New York. According to Miller, overall survival after treatment for DCIS is excellent, yet many patients overestimate both their risk of local recurrence and their risk for contralateral breast cancer, potentially leading to decisions in favor of bilateral mastectomy.Bilateral Mastectomy in DCIS May Be Overtreatment

“There is no data to support bilateral mastectomy. Doing more surgery does not in fact give patients better outcomes.” – Dr. Susan Love, SABCS 2015: Comparing Lumpectomy vs. Mastectomy: Survival, Complications and Cost, Breast Cancer Action

Why Are So Many American Women Having Mastectomies?

“For many years, experts have known that women who undergo mastectomies for the non-invasive condition called ductal carcinoma in situ (DCIS) or for early-stage breast cancer do not live longer than women undergoing lumpectomies. However, the latest research goes a step further:  A 2016 study of more than 37,000 women with early-stage breast cancer found that the women undergoing lumpectomies were more likely to be alive 10 years later than women with the same diagnosis who underwent a single or bilateral (double) mastectomy. They were also less likely to have died of breast cancer. In 2016, Harvard cancer surgeon Dr. Mehra Golshan reported that of almost half a million women with breast cancer in one breast, those undergoing double mastectomies did not live longer than women undergoing a mastectomy in only one breast. These are just the latest studies – for more information about the years of consistent evidence that less radical surgery is better, see this article.

And yet, an increasing number of U.S. women with early-stage breast cancer are choosing to have both their breasts removed “just to be safe.”

A 2015 study conducted by researchers at Vanderbilt University reported that, for women diagnosed with early-stage breast cancer in one breast, the rates of double mastectomy increased from 2% to 11% from 1998 to 2011. Researchers found that decisions to have a double mastectomy increased more for two groups of women: 1) Women with ductal carcinoma in situ (DCIS) where there are abnormal cells inside a milk duct in the breast that won’t spread and aren’t dangerous unless breast cancer develops later; and 2) Women with cancer only in one breast that has not spread to the lymph nodes. This year (2017), researchers from Emory University reported that the percentage of women over 45 getting double mastectomies for early-stage breast cancer in one breast increased from 4% to 10% in less than a decade. For women ages 20-44, the percentage tripled from 11% to 33%. To some extent, geography was destiny: in five Midwestern states (Nebraska, Missouri, Colorado, Iowa, and South Dakota), 42% of the women who got surgery had a double mastectomy.

The bottom line is that women with DCIS or early-stage breast cancer have more effective and less radical treatment options than mastectomy. Even women with BRCA1 or BRCA2 may never develop breast cancer, and if they do, they may not need a mastectomy. We need to stop thinking of mastectomy as the “brave” choice and understand that the risks and benefits of mastectomy are different for every woman with cancer or the risk of cancer. In breast cancer, any reasonable treatment choice is the brave choice. Each woman should make the decision that is best for her, based on information, not on fear.”

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31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 22 — Screening Doesn’t Save Lives

Did you know…

Professor Peter C Gøtzsche shared on Twitter today: “Pink month lies: “Early detection saves lives and breasts.” It doesn’t, and because of overdiagnosis you will reduce your risk of becoming a breast cancer patient by one-third if you ignore summons for mammography screening.”

Be sure to watch this important video in its entirety: “Time to Stop Mammography Screening”

  • “Women faithfully attend to it as if it were a religion — although it is harmful to them.
  • We should stop mammography screening.
  • If you do a utility analysis, considering that it doesn’t save lives, and it creates a lot of overdiagnosis, and unhappiness through doing that, and worries about false positives, you can imaging any utility analysis must come out negative. This is why I tell you, mammography screening is immensely harmful.”
  • Screening doesn’t save lives and it doesn’t save breasts either.
  • You remove a lot of breasts in people who it would have been nicer to have them in situ, on the chest — It’s actually quite terrible.
  • By dropping screening, a woman can lower her risk of getting a breast cancer diagnosis by 1/3.
  • Screening doesn’t work and it causes breast cancer.
  • Stay away from screening. We don’t know anything that is more effective than that.
  • Why do people do this? Because information about screening is one-sided and dishonest.

Also by Peter C Gøtzsche:

Mammography screening is harmful and should be abandoned

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31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 21 — Biased Guidelines & Marketing

Did you know… Professional radiology and surgeon “societies” make up their own guidelines for breast cancer screening while dismissing and discrediting the US Preventative Services Task Force Guidelines.

Persuasive marketing campaigns reinforce these “society-created” guidelines. This include websites, videos, brochures, sound bites, blurbs, TV news appearances, and social media graphics and hashtags. Charitable organizations and major medical centers join this marketing bandwagon because the materials come from “professional societies” with credibility.

So what’s the problem?

Women can not possibly make an informed decision when they are bombarded with slick marketing campaigns from groups with “specialty bias.”

In Professional Societies Should Abstain From Authorship of Guidelines and Disease Definition Statements: “Hundreds and thousands of designated guideline coauthors share in the society-wide power game across a large portfolio of guidelines and statements that improve, fine tune, or manipulate disease definition and management. Tens of thousands of society members then cite these articles. This creates a massive, clan-like, group self-citation network.”

One review found Author’s specialty and conflicts of interest contribute to conflicting guidelines for screening mammography

Challenge: Watch videos below and see if you can discern the unbiased educational ones from the “specialty bias” marketing videos?

Below are some of the “specialty groups” marketing videos and materials:

#40 not 50 , RadiologyInfo.org , MammographySavesLives.org ; EndTheConfusion.org. ; The American College of Radiology ; The American Society of Breast Surgeons (ASBrS) ; Society of Breast Imaging



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